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Perhaps having your physician call or meet with the
coaches and teachers involved would help. The
limitations on endurance breathing just aren't common
knowledge amongst the non-scolies.
Mike

I was wondering what anyone did when they had that horrible pain in
thier side and ribs when they had to run for gym class or any other
sporting event. My daughter has now been diagnosed with scoliosis
because I noticed the curve while she was wearing her swimsuit three
years ago. I remember having the same problem when I had to run
long distances or play soccer or anything that caused me to have to
do a lot of extensive moving. I was always told I complained to
much to just be quiet about it. Now I know that it wasn't something
that is just made up in my mind, my daughter has the exact same
symptoms as I had and I can't seem to get through to the school or
the gym teacher that her pain is real and it needs to be dealt with
instead of telling her to cooperate. I am hoping that maybe there
is some deep breathing she can do or other outside exercises that
may help to make this easier for her.
Thank you!
Denise

This is Penny Coan....Karl's wife. As you all probably know..Gene as I called him.. started this site in the hope that he might help someone out there who was suffering

with pain and discouragement. On February 16th, 2004 he passed away still hoping that someone was a little better off having found the life-with-scoliosis group. It is my hope and I am sure that it was his, that you all keep talking together and can ease the pain I know that you all suffer. He died from a heart attack at 52 years of age. His heart problems were masked by his back and neck pain. Please be sure your doctors

continue to monitor you for everything..

Thank you for this time...

Love and better health to each one of you.

Penny Coan

mecoan@...

Penny Coan
Woodlake Travel - 713-840-8500 ; 713-840-0954-FAX

pennyc@... -Business

boxer57@... - Home

Hi Michelle:
Can you let me know what your doctor says?
I've been taking 8 hour tylenol and extra strenth ibuprofen for several
months and I think the effects are starting to wear off.
Robyn

Hi Liz,

Is the pain on the inside or the outside of your mouth? I have had jaw pain, and it was attributed to TMJ (tempomodular joint disorder - jaw joint). My compensatory curve in the neck has thrown my jaw joint out.

[INLINE]
Hi Robyn,
The only thing my regular doc did was tell me to take Tylenol extra strength. She was hesitant to give me "opitates" because I am on an anti-depressant. I go to see my shrink this coming Friday and I am going to ask HIM what I can take for pain.

[INLINE]
A cat pours his body on the floor like water. It is restful just to see him.
William Lyon Phelps

Hola Scott

Sorry to hear about your pain, I know how you feel as I too experience the same problem and I am seeing a surgeon next month with the results of the MRI that he sent me to have, I am in Spain however, so my suggestion on a surgeon would do you no good! LOL

I have been taking Voltarol for pain relief which I find has been helping, I go swimming daily and that is such a relief as I don't feel pain when in the water, my doctor did also suggest a stationery bicycle and I have been using that every day, however I cannot use it much and I have experienced muscle spasms as a result, not sure why but I think that is because I am building the muscles.

I also have Reflexology to help control my pain every 2 weeks and this also helps. Heat packs can be a god send as well, and I use Ibuprofen cream that I put on the area, there is someone on this group I think that uses patches and she said that helps, could be worth a try, I have yet to get some because I wanted to speak to my doctor before I took them.

He also gave me a back brace to wear and although it is a bit warm to wear it at the moment (I melt in 36º with it on!), I find it helps, I smashed vertebrae L4 which then in turn exploded the disc and of course bone on bone hurts so I sympathise with you.

The brace I have is LT-310 should this be something you consider.

I am fused with Harrington rod from T4 to L1 and T6 to T10 and have had it for 15 years, I started having problems 10 years after surgery.

One again I am sorry to hear your pain and your desperation to find some relief, I hope your search proves fruitful.

All the best and take care

Nutty

I was wondering if anyone who's had surgery has experienced digestive problems?

I've had two surgeries, two rods, and am fused T4 to L4. Since my surgeries I've had progressingly worse digestive problems, and food sensitivities. Once in a while I have severe back swelling and pain (usually when I've been doing something for too long, like sitting the previous day at a workshop). I'm VERY sore the next day, and the day after, once the swelling has subsided I get diaherrea. I've been told it's likely related to pinching of nerves from the spine. I'm curious if others have experienced this.

Any info. would be great!

Christine

Hi Scott, I'm sorry to hear what you're experiencing....I've been there. I had surgery done in 89 with a revision done on the lower spine in 92. I was having severe pain and a bone scan revealed a "hot spot", or pseudoarthrothis. The revision surgery did help it by securing the hook and redoing the fusion. I still get pain at the upper end of the rods, especially on the rib hump side. Mine's been attributed to scar tissue tearing when the rod shifts. what works the best for me was heat (moist heat from a hot water bottle is more effective than dry heat from a heating pad). Also I have rubbed my sore areas with Deep Cold.

I've seen specialists here, who've said that to have surgery to lengthen my fusion would only create more scar tissue, which wouldn't be beneficial from a pain control stand point. I was told to expect osteoarthritis at the top and bottom of my instrumentation and fusion. Have they done a bone scan or MRI to see what's causing the pain? I've been on Celebrex (upset my stomach), strong antiinflamatories, (upset my stomach), and muscle relaxants, as well as typical pain killers. The muscle relaxants really helped with controlling the muscle spasms. Sometimes doctors and pain specialists perscribe low-dose antidepressants for pain control as well. The benefit with these is they also help you sleep. I've tried them too.

Hope you find something that can help.

Hey everyone, First a littlle background, had surgery back in 1986, I am fues from T-5 through L-1.

I am having a LOT of pain in the lower back, and in the upper back, around T-7 (according to my PT) -- the problem I am having right now is that my insurance will no longer pay for PT, so that is gone -- although it was not helping anyway.

I am currently seeing Scott Kitchell in Eugene, and I am not having any luck with getting anything done about my pain, or figuring out why I am having pain in my fusion -- does anyone out there know of any other back doctors in the Eugene, Roseburg area of Oregon --for that matter, anywhere in Oregon.

I have been told that about the only way that I can try and take care of this is to have revision surgery -- at this point, I ready for just about anything, I do not know how much longer I can just live with the pain -- I can't even do simplest things, without a huge increase in my pain level -- they have told me that they have no other pain meds for me to take -- I have gone through them all -- and nothing is doing anything at this point.

My current doctor has told me that he will not even talk about surgery becouse I am to young to have the surgery, and the additional problems that could cause -- but at this point, my life consist of moving as little as possible, and doing next to nothing.

If anyone out there has any ideas for pain control they have found works, or any information on a docor in the area (I live in Cottage Grove) -- it would be most helpful, because I need to get into to see someone SOON.

Thanks,

Scott
sthayer@...

Hola Debbie

Yes I have had what you describe and yet it is painful, no idea what it could be either and I don't want to say much as I may get jumped on LOL.

I am having similar problems at the moment but in my hip area and I think that is a spasm, could it be the same down the leg, merely a suggestion as spasms don't last for very long, I am having massage done today but shoulders only, the rest of the skin on my back is very sensitive so I just cannot have anyone else touch it.

My shoulders crunch and they get very sore but the massage is lovely.

Nutty

Hola

Thanks for the mail I think I will certainly give it a go and if it hurts I will just stop.

I have been using an exercie bike recently but am finding I keep getting what I think is muscle spasm and it hurts, not sure why and maybe thats because the muscle is trying to build up, I cant cycle for long but my doctor suggested it for my knees, I do lots of swimming and that is like a god send when I get in the pool as I am pain free.

Thanks

Nutty

I have 2 rods and chronic pain. I found that yoga helped with the relaxation, and stretching. The deep breathing exercises really helped with my chest tighteness and shortness of breath. I let the instructor know ahead of time about my back, and they have all been really good at providing me with alternative poses and stretches. I never worried about having to get into the poses, and instead just enjoyed the relaxation it provided. With chronic muscle and soft tissue pain stretching makes a huge difference as long as it's slow paced, guided, and safe! I enjoyed the peacefulness of yoga most of all, and there are bound to be people in a beginner class without rods that can't do some of the poses!

I tried doing regular Yoga a month or so ago. I ended up with a twitching leg for a week. I was horrified. I thought I was having some sort of neuro problem, but then it went away. It had to be the yoga. I have troubles with the same leg going to sleep on a regular basis.

[INLINE]
A cat pours his body on the floor like water. It is restful just to see him.
William Lyon Phelps

liz <piglet28266@...

To: jbrown341@...

Hola Debbie

I noticed you mentioned the Yoga for Scoliosis I would be interested to hear how that helps you, I was thinking about purchasing it myself but was a bit dubious about it, not sure I can bend in some of the positions they expect of you in Yoga, worried I may hurt myself even more, but I am willing to try anything!

Take care

Simone aka Nutty

Hello Michelle,

Welcome to our list. I am so sorry to hear about how you've suffered. I really, really feel for you and hope you find relief very soon. You have been through so much in your life with that awful pain. You certainly deserve better and I hope only the very best for you.

I am glad your husband is suportive of your medical needs. I can imagine he must have felt so helpless when you have been in pain, it is not easy for our loved ones to see us like this as they go through it with us too.

I have not had the horrible pain you have had so frequently, but I still suffer everyday too. I am 46 now and have had scoliosis since about 12. I have never had any surgeries as I do quite well and my curve is not in the severe range yet, although in the last 3 years, I have had a lot more problems with it than I ever did growing up.

Right now, I am going to PT with an emphasis on deep tissue therapy, which can be quite painful. The goal is go help my muscles loosen up so they don't cause me as much pain. I also do a series of exercises which some days is not easy due to the pain.

I recently ordered a special Yoga DVD, one especially for scoliosis sufferers. I hope this helps.

I hope you find much support from this wonderful group of people who can very well relate to what you are going through.

Debbie/ WA

Michelle <2boots2slippers8paws@...

Hi, my name is Michelle. I am 33 years old. When I was 13 years old, we had a scoliosis screening at my school for all pre-teen females. I was singled out as questionable for Scoliosis. My mom took me to the Orthopedist who came to my regular doctor's office once a week. He said I did have it, but it wasn't bad enough to treat. He advised exercise and gave me some nutritional supplements. My family and I basically just forgot about it. It wasn't noticeable and didn't seem to be causing me any problems.

Fast forward to high school. I started having back pain when I was about 15. I also had terrible "female problems" from that age. That was later diagnosed as endometriosis, but I suffered for 15 years before getting relief. That in itself caused me back pain, so Scoliosis really never came up again.

In the mid 90's, I worked a job where I was on my feet for 8 hours a day. I had horrible back pain. Sometimes it was so bad I had to lean on a counter just to keep from crying. Doctors always just gave me pills and sent me home. I spent 3 years until 2000 working as a nurse aid in a nursing home. I did a lot of lifting. Of course, I always had severe back pain. I worked this job because I lived in a small town and it was the best I could do to support myself. After I quit that job, I primarily stayed home for a few years. My husband was supportive of this. I still had bad back pain, even with tons of rest. In 2002 I had my hysterectomy. After being on bed rest for a couple of months, the back pain got to where I could not stand it. I was lucky in that my primary doctor specialized in sports medicine. He took an x ray of my back. It showed my curvature, which I had never seen before. It was very pronounced and I was shocked by the sight of it. He really didn't mention that
though. He was more concerned with what he thought was a fracture in my sacrum. I told him I'd been very inactive for the past year or so and don't see how I could have done it. He said I could have done it in the past and it just never healed since it wasn't treated. I told him I had worked at a nursing home with heavy lifting. He said that was likely the culprit. I was shocked.

He sent me to an Orthopedic surgeon. This man was a complete joke. I had an MRI before the visit. He not only told me I didn't have a fracture, he never even mentioned the the scoliosis. I left out of there sort of stunned. I mean, a actual surgeon had looked at my back and didn't see a problem. So, I just went on with life the best I could with the pain I had.

In January of last year I was forced to take a job as a nurse aid again. Surprisingly, my back pain did not get any worse. By this time my tolerance was built up I guess. At night it was awful though. I think that had a lot to do with the sleep problems I then developed.

In February of this year, I was able to quit my job. My husband joined the military, so I also had good health coverage for the first time in a couple of years. That same month, I had surgery to repair an umbilical/incisional hernia, due to the lifting I had done for that year. In April I moved here to the east coast. I was still having pain from my hernia surgery, so my new primary care doctor sent me to have a stomach x ray. When I met him to discuss the results, he mentioned my scoliosis. I decided on my own to get the films and look at them. What I saw was horrifying. The curvature was much worse than two years before. My pelvis also looked to be tilted to one side.&nbsp; I took the actual films to his office last month and showed them to the PA, whom I was there to see for something else. She said I needed to go to a surgeon and that my scoliosis was very pronounced. She also ordered an actual spinal x ray.

I've spent the last three weeks getting this all approved through my insurance. Yesterday I finally got an appointment for the 30th of this month. I went last evening and picked up my film and report to take with me. I want to cry when I look at the film. I can't believe I've spent 20 years walking around in pain, with this curvature and no one wanted to help me. I am seriously afraid that this doctor is going to do the same thing to me. I can't take the pain anymore. I've read books that say Scoliosis does not cause pain. They are liars. My nighttime is so bad that despite sleeping pills, I have a hard time staying asleep all night. Riding in a car for more than 15 minutes is also a bad time for me.

I just want some relief, and some understanding. Thanks for listening.

[INLINE]
2boots2slippers8paws @ charter.net
confettikitti @ charter.net
fentoncatnmouse @ charter.net

Thanks to my entire family for standing by me and helping me sort out this computer stuff.
And most of all the person upstairs. He has helped us through many hard times as he will anyone.

Hi, my name is Michelle. I am 33 years old. When I was 13 years old, we had a scoliosis screening at my school for all pre-teen females. I was singled out as questionable for Scoliosis. My mom took me to the Orthopedist who came to my regular doctor's office once a week. He said I did have it, but it wasn't bad enough to treat. He advised exercise and gave me some nutritional supplements. My family and I basically just forgot about it. It wasn't noticeable and didn't seem to be causing me any problems.

Fast forward to high school. I started having back pain when I was about 15. I also had terrible "female problems" from that age. That was later diagnosed as endometriosis, but I suffered for 15 years before getting relief. That in itself caused me back pain, so Scoliosis really never came up again.

In the mid 90's, I worked a job where I was on my feet for 8 hours a day. I had horrible back pain. Sometimes it was so bad I had to lean on a counter just to keep from crying. Doctors always just gave me pills and sent me home. I spent 3 years until 2000 working as a nurse aid in a nursing home. I did a lot of lifting. Of course, I always had severe back pain. I worked this job because I lived in a small town and it was the best I could do to support myself. After I quit that job, I primarily stayed home for a few years. My husband was supportive of this. I still had bad back pain, even with tons of rest. In 2002 I had my hysterectomy. After being on bed rest for a couple of months, the back pain got to where I could not stand it. I was lucky in that my primary doctor specialized in sports medicine. He took an x ray of my back. It showed my curvature, which I had never seen before. It was very pronounced and I was shocked by the sight of it. He really didn't mention that
though. He was more concerned with what he thought was a fracture in my sacrum. I told him I'd been very inactive for the past year or so and don't see how I could have done it. He said I could have done it in the past and it just never healed since it wasn't treated. I told him I had worked at a nursing home with heavy lifting. He said that was likely the culprit. I was shocked.

He sent me to an Orthopedic surgeon. This man was a complete joke. I had an MRI before the visit. He not only told me I didn't have a fracture, he never even mentioned the the scoliosis. I left out of there sort of stunned. I mean, a actual surgeon had looked at my back and didn't see a problem. So, I just went on with life the best I could with the pain I had.

In January of last year I was forced to take a job as a nurse aid again. Surprisingly, my back pain did not get any worse. By this time my tolerance was built up I guess. At night it was awful though. I think that had a lot to do with the sleep problems I then developed.

In February of this year, I was able to quit my job. My husband joined the military, so I also had good health coverage for the first time in a couple of years. That same month, I had surgery to repair an umbilical/incisional hernia, due to the lifting I had done for that year. In April I moved here to the east coast. I was still having pain from my hernia surgery, so my new primary care doctor sent me to have a stomach x ray. When I met him to discuss the results, he mentioned my scoliosis. I decided on my own to get the films and look at them. What I saw was horrifying. The curvature was much worse than two years before. My pelvis also looked to be tilted to one side.&nbsp; I took the actual films to his office last month and showed them to the PA, whom I was there to see for something else. She said I needed to go to a surgeon and that my scoliosis was very pronounced. She also ordered an actual spinal x ray.

I've spent the last three weeks getting this all approved through my insurance. Yesterday I finally got an appointment for the 30th of this month. I went last evening and picked up my film and report to take with me. I want to cry when I look at the film. I can't believe I've spent 20 years walking around in pain, with this curvature and no one wanted to help me. I am seriously afraid that this doctor is going to do the same thing to me. I can't take the pain anymore. I've read books that say Scoliosis does not cause pain. They are liars. My nighttime is so bad that despite sleeping pills, I have a hard time staying asleep all night. Riding in a car for more than 15 minutes is also a bad time for me.

I just want some relief, and some understanding. Thanks for listening.

[INLINE]
2boots2slippers8paws @ charter.net
confettikitti @ charter.net
fentoncatnmouse @ charter.net

[LINK]

I think every case will be different but I had surgery at age 4. 6, and 12. Parts of my spine are fused and I have other problems like a little bit of spinal bifada and a split spinal cord(bone spur was growing though it and tore it 3 inches).

Anyway, I had my first child at age 29 and second at 32. I had to have c-sections and had to be put under. Because of my fusions and problems an epidural wasn't an option. Everything worked out fine for me. Being pregnant the second time was the biggest problem but even that wasn't that bad for me. Going in my doctors didn't really know what the out come would be but said if you want to try. It was a bit of a gamble but like I said for me it worked out. I did a lot of praying before I got pregnant saying "If this is going to hurt my body too much don't let me get prego". If I didn't get pregnant naturally I wasn't going to force the issue. Both times I got pregnant in two months and after the first c-section was told I also have a unicorn uterus (which mean I only have one side). They were amazed how easily I got pregnant and how easy my pregnancies were. Not that they were easy just that they thought I'd have to spend the last few month in bed and I didn't have
too. Although, both kids were born over a month premature, one 6 weeks early and one 7 weeks early, they were both fully mature. I guess I grew them faster so my body didn't have to have as much abuse.

Good luck with your surgery, recovery, and life afterwards.

Sherry

How did you all deal with pregnancy (the ones that have children) after the surgery. I have not had the surgery yet (Feb. 2005) but my biggest worry is pregnancy. I do plan to have children a few years later but just want an insight on others pregnancy. Did you have to have a c-section? How was the pain? Any different then others pregnancy? thanks!

Teresa

.(`
.(¸

Hola Debbie

Physiotherapy is the treatment of injuries or conditions (such as arthritis) to assist the natural healing process and encourage your bodys return to normal daily function.
After an injury, physiotherapy has been proven to speed up the rate of recovery by reducing swelling and preventing further joint stiffness. Early treatment can result in a more rapid return to active sport, work and normal daily tasks. With early physiotherapy treatment, tissue damage can be minimised. Physiotherapists are highly skilled manual therapists who primarily use hands on treatment to get you quickly back on the road to recovery. Occasionally, the therapists may use ultrasound or laser technology to assist your recovery.

Treatments will vary depending on your condition and may consist of soft tissue massage and stretching, mobilisations or manipulations of your joints. Specific exercises will be used to strengthen the injured parts of your body, as exercise is an important part of your rehabilitation. Basically Physiotherapy literally means treatment by physical means.

I had Physio before and after surgery I also had Hydrotherapy which is in water, I always find water helps me as you are weightless and I have less pain when submerged in water.

As far as success rates go with Scoliosis surgery I think you will find it is very successful, my curve was 76 and I had no problems until now, I walked straight away after my 2 week stay in hospital as I had Physiotherapy whilst lying on the stryker frame to help keep my legs mobile and strong ready for the day I left, after surgery and for 10 years I didn't have any pain at all (this will vary depending on type of surgery, degree of curve, etc etc), the only pain I experience now is coming from unfused vertebrae and I think that is really understandable as the shock absorbers (discs) in between these vertebrae have had to take all my daily shocks since my op, so it makes sense that these should cause problems now.

I can touch the floor, bend side to side, cannot bend backwards, but I am not a gymnast so why would I want to LOL.

I think all I am trying to do is calm what fears you may have about Scoliosis surgery, there are many of us out there that had the surgery and have not complained about the rods themselves but other problems that surgery can bring, i.e. like vertebrae problems, sacro iliac joints, nerves, muscles and the list is endless, my Harrington rod goes from T4 to L1 and T6 to T10 and up until this point in my life I have done most things that a normal woman should enjoy.

What degree is your curve now and what are you doing to help maintain this degree, I also wore a plaster cast for 7 months after surgery, which was a pain and very warm! I wear a brace again now while I am deciding where to go from here, more surgery is on the cards but I just need to decide who to let to do that, if at all.

Take care and I hope some of what I have said helped some.

Simone aka Nutty

Hi Amy

Sorry for the delay in replying to you.

My rib hump was improved with the cosmetic surgery I had at the age of 17 years to reduce its appearance. It was a bigger operation than they thought and I was in plaster for a couple of months. A few ribs were taken away, I was iin hospital about a week, that was 21 years ago, not sure how long the stay is now.

I did have a trapped nerve a few weeks after having the operation and had to have a cortisone injection, this can happen to anyone, in my case it was mainly due to the fact that the surgeon was away on holiday and the other dr said I had to rest, when he came back he said I should have been moving around!

I hope this is of some assistance to you.

Best wishes

Liz

Oh good, so I can do a bit of moaning too? That would sure be
nice. :-)
I kind of lost the option to lean forward very far after that last
surgery. I am pretty sure it had a lot to do with the screws in the
hip. I wouldn't agree to do that last surgery unless the doctor
promised me he would do his best to make my legs appear to be the
same length. My legs are the same length but my right hip was a lot
higher than the left causing an inch difference between the length
of my legs. I really wanted to be able to wear sandals and with
having to have an inch shoe lift there were only certain kinds of
shoes that the lift could be added to, sandals weren't an option.
So he did his best, I actually gained two inches after surgery, it
even amazed the nurses, they had measured me before surgery and had
the walker ready at that height and when I got out of bed again I as
two inches taller. We all had a good laugh over that one. I was
with a nurses aid when I realized that my legs were actually the
same length again and I could wear sandals, she was so sweet, she
even cried when I started to cry. There were some pretty amazing
people at that hospital.
I had my first surgery when I was two years old and I haven't found
any documentation as to what the curves were at that time, I did
find an old x-ray that shows the curves and it was amazing to see
them in such a small person. Whatever they did the first time
didn't take because I had some significant curves again by the age
of seven, again I don't know what they were because the only notes
were from an x-ray tech that mentioned I had severe curves for a
person of that age, they were checking for pneumonia in those x-
rays. Then nothing came about again until I was 10 years old and
they decided to stick me in a Milwaukee brace, the kind that goes up
around your neck and forces you to look up in the air all of the
time, I had to wear that awful thing for five years. Even after all
of that they did the fusion surgery. That was good for a couple of
years and then the harrington rod broke and they had to take it
out. I stayed away from doctors for a long time after that, then I
had my daughter and I started to have horrible lower back pain and
went to see a doctor, he gave me the news that my lower vertabrae
were shot. At the time my daughter was 3 months old and I was a
single mom so I just sat on the information for seven years, at that
point I couldn't keep taking half a bottle of narcotic pain
medication a day so I went to a specialist and he did his testing
and told me that a spinal revision surgery would give me some
quality of life. I thought about it for a bit and then last
September had the surgery. I do have a bit more quality of life in
some areas but I have also lost a lot in other areas. It is almost
impossible to climb stairs and I hate elevators, I can get quite
irritating to friends when we go places. tee, hee I don't regret
the decision to have surgery, I just wish I was in my 60's and could
have retired first, now I am struggling with trying to recover so
that I can go back to work and I have to have this next surgery in
October or November. It will be sometime next year before I can go
back to work. I really can't complain though, being off from work
gave me the chance to be a real mom for the first time in my
daughter's life and we really have become a lot closer this summer,
so then again maybe it is just something that was meant to be and
before I know it life will change again and I will be back to my old
self and my daughter and me will be closer from now on. I trully
believe that everything happens for a reason.
Yep, Spain is a ways away from me, I am in Fargo, North Dakota. You
probably haven't even heard of North Dakota, we are the flat land of
the United States and have the terribly cold winters and everyone
wonders why we choose to live here. Fargo is actually in the Red
River Valley and we live right by the Red River, the only river in
the United States that flows north instead of south like all of the
other rivers. We have the most beautiful seasons around here, you
could even say that winter has it's own special beauty to it.
Thanks for writing back. Until school starts again I only get the
chance to pop on and off the internet for a bit, but school starts
again on August 26th so it isn't to far off that I will be alone all
day.
Denise

The following message sent by this account has violated IAVI's email policy:

Hola Robyn
Yes I had an MRI scan last week for the same problem, my surgeon thinks I
have smashed my vertebrae due to the position of the missing piece, but we
don't think the pain is coming from there, due to the vertebrae he thinks my
shock absorber "disc" has exploded in the process and this is causing the
pain, bone to bone, vertebrae rubbing together.
I will know more next month when I go to see the surgeon again and we have a
look at the MRI results.
I had my Harrington rod put in at the age of 12 and am fused from T4 to L1
and T6 to T10, I was pain free for many years and now suffer on a daily
basis, I do regular swimming, bike riding (stationery bike), and
reflexology.
I am not sure what decision I am going to make, as my surgeon has suggested
I have more surgery to fuse together the vertebrae that are missing the
vital shock absorber, I obviously need to find out, where the fusion will
start and finish (I think he wants to go to the Sacrum) before I go further
with this.
There are many people in this group Robyn that are suffering along the same
lines, so you will find lots of useful information and different ideas, I
hope you can find some relief for your lower back pain, but I would suggest
that you defo go to see a surgeon and get them to take a look at you to see
where you go from here, do you have flat back also?
Best wishes
Nutty

Thanks Nutty--what is flat back? I go see a surgeon in September for an
opinion. Are you working?
Robyn

Hiya
Welcome to the group. I'm Sarah. I am 20 and from UK. I only
recently joined this group too. I have quite bad scoliosis. They
offered me surgery but i chose not to have it.

Hello Nutty et al:
I am having a lot of problems with lower back pain. Had the harrington rod
put in at 23, and I am 50 now. Have tried physiotherapy, heat, cold, 8-hour
tylenol. Most recently had an MRI and am waiting for results so I can get a
diagnosis. I think it is a herniated disc.
Does anyone else out there have these problems? If so, what did you do
about it.
Robyn (musicandnature) from Toronto, Ontario, Canada

Hola

Welcome to the group, you certainly will find lots of support here, we are a caring bunch of old moaners really ............LOL ;)

Hmmm toe nails, that is a tricky one but I do know where you are coming from, I usually sit on the toilet and do this as my sink is in front and I can put my leg up and lean forward and do it that way, or I can get my leg up and place on my knee when sitting on the toilet, maybe that can work for you.

If not I would go to the doctors and get them to do my nails, or even go for a pedicure (as that is a lovely way to be pampered ;).

How is your Scoliosis now, what surgery have you had done, what degree curves did you have etc etc, just being nosey, and you will find that most of us on here are :D.

Anyway its good to talk!

Take care and write soon and hope you get those nails cut, if you lived down the road I would come do them for you, but I am in Spain, quite a way from you I imagine LOL.

Simone aka Nutty

Hello Denise,

Welcome to the group! I am sorry I don't have any suggestions for your toenail problem except to say that maybe you should consider getting a pedicure so someone else can help with this problem. I know that sounds costly, but it's the only thing I can think of.
Can you clip your nails if you put them up like on the edge of the bathtub or maybe on a chair while bending your leg?
Wow, four surgeries...that sounds like a lot. Why did you have the last surgery? Do you have a lot of pain? How old are you, if you don't mind me asking.

Hope you enjoy the list!

Debbie
Hi, I am new to this group and after reading through some of the
posts I found that everyone here seems to really care about those in
this group, that is nice to see since there are so few people out
there who can really understand what we go through on a daily
basis. I recently had my fourth surgery related to scoliosis, they
actually gave this one a name, they call it a revision surgery. It
has taken me longer to recover than I thought it would and I have
found some very interesting things that I never thought I would have
to worry about. The oddest thing that I have a problem with right
now is ingrown toe nails. The reason I am having problems with this
is I can no longer reach my toes to clip my nails, I can't get at
them from a sitting position, lying down or standing up, they are
just totally unreachable. As odd as this sounds it is a very
frustrating situation to be in. If I were married I would ask my
spouse to do the deed for me, but since I am on my own with a young
child I am in a position that I need to come up with a new and
innovative way to do this. So I am wondering, is there anyone here
who has this same problem and if so what have you done to get around
it? I am willing to entertain any ideas that come up.
Thank you!
Denise

Hi Mike

Thanks for your advice about updating my system to stop the sasser worm. I did put a patch on my system, if I need any more advice I will let you know.

Best wishes

Liz

Hi!

When my husband and I were buying a new bed, we knew that it basically had to be one that felt right for me. We bought an Obusforme from SleepCountry. It was expensive....$2000 (4 years ago), but SOOOOOOOOO worth it! I notice a huge difference if I sleep on anything else. I love my bed! The good thing about SleepCountry is that you can try them out too!

I have a thin mattress with 3/4" plywood underneath.
It feels just right. Springs are a no-no for my back.
I have tried the Tempurpedic mattress, directly on
the hardwood floor, and it was pretty comfortable. I
would not recommend it for warm, humid weather,
though, as it doesn't breathe well. If you can sleep
with an airconditioner, it would probably be pretty
darn good for a scolie.
Mike

Hi All

I was wondering what kind of beds people sleep on, do you have a special one or just go down the local shop and buy a mattress, I was thinking that mine was too hard, I have a 4 poster bed with a hard mattress and have been looking at companies that do special mattresses, any thoughts?

Simone aka Nutty

To visit your group on the web, go to:

A bit about me. Since I'm new to the group, I thought I'd share my story...please feel free to ask me any questions! I had Cortrell Doubosett surgery when I was 13....then I had a revision when I was 16 due to pseudoarthrosis (false joint and failure of the bottom hook). Three years later I was in a car accident which created scar tissue and increased soft tissue damage. I'm 29 now. I didn't have an option to have surgery.....at that time one of my curves was 70 degrees and had progressed A LOT in six months. I had gone just under a year from diagnosis to surgery. My curves have moved around a bit (basically relaxed), and currently they are about 35ish and 45ish....I also have a compensatory curve in the cervical spine now as the spine balances out. I am fused from T4 to L4, which is about 10 vertebrae, and still have a rib hump and tilted pelvis. After 15 years of having 2 rods and fusion, I do have osteoarthritis and chronic pain....that goes along with
degeneration in the upper and lower unfused portions of my spine. I also have some digestive problems that correlate to my spine as well. I had fast progressing scoliosis with severe rotation though. I think it's important to remember that everyone is different! Best wishes to everyone, and I would love to chat!

Christina

My scoliosis got up to the 70s in the upper curve and 30s in the
lower curve. It would have been worse if I hadn't worn the brace
throughout junior high and high school. I had the surgery when I was
20, and they put C-D rods in to hold it. My curves are now down to
about 13 degrees top, and not even worth measuring for the lower.
I haven't had time to chat much this summer, but maybe I can catch up
with you when things settle down. I have a week to get my whole
house into boxes and another week to finish my wedding dress and
flowers & junk. I'm feeling a little stressed!
Lorena

Moving to East Hill area of Kent. I've been making the commute every
week for what seems like forever, but this is supposed to be the last
weekend. Then I just have to make it through the wedding and find a
new job!
Lorena

Hello Robyn,
I am new here also, my daughter has two curves 37 and 40. I am
trying to find out what happens after surgery? Did you have
vertbrae fused? Her Doctor told us, when the vertabrae are fused it
puts all the load on the good ones. Eventualy the will wear out.
It sounds like your treating that with the shark cartilage and a
calcium-magnesium liquid. I pray your MRI goes good. I look
forward to hearing about it.
Jim

Hi there everyone:
I'm new too! My name is Robyn and I had surgery for scoliosis about 20
years ago by Dr. John Kostuik, a world renowned surgeon who used to live in
Toronto, then practiced for many years at the Mayo Clinic and has just
retired.
All has been fine until the last couple of years--now I am experiencing low
back pain. It has been better since I have been taking glucosamine, shark
cartilage, and a calcium-magnesium liquid.
I'm going for am MRI tonight at Sunnybrook here in Toronto.

Hi
Thanks for saying hi.
I used to wear a brace when i was younger but they said i didn't need
to wear it anymore.
I chose not to have surgery because of the risks involved.
How bad is yours?

Hi everyone! I'm new to this group. I live on the West Coast of Canada (British Columbia). Anyone else from BC too?

Welcome, Sarah. If you can ignore the spams that show up between
real posts (DON'T open any attachments on this board!) you'll
probably enjoy the group. I think we have at least a couple of other
UK folks in here, as well as representation from a few other
countries and various parts of the US.
Have you had any bracing? Surgery? Physical Therapy?
Glad to have you here.
Lorena

Hiya
I'm new. I'm Sarah, age 20 and from UK. I have scoliosis.

I didn't know you were moving! What a hassle to have to deal with
that while you are working through your health problems. Hope it is
a "good" move! Ugh!
Glad the meds helped you, though.
I'm moving too...to Washington. I can totally relate to that part of
your woes!
So they're thinking the throat tumor isn't hurting anything right now?
Hang in there!
Lorena

Steve:
Especially since you have no known family history and haven't noticed
anything, I wouldn't go make a special appointment. However, at her
next regular checkup (assuming you do annual well-child checkups?)
make sure the doctor does a quick scoliosis screening. They will
just do a visual scan of her spine, both standing straight and
bending over, and see if there is any indication of curvature. Most
schools do this (the visual scan) as well, but many wait until junior
high or early high school. The problem is that scoliosis usually
shows up during or after growth spurts at pre-teen and teenage ages,
so many kids start "showing" around 6th or 7th grade.
If she has grown a lot lately, you might do a visual check yourself
if she doesn't have any checkups scheduled for the near future.
You're looking for sideways curvatures of the spine, uneven shoulders
or shoulder blades, or even excessive front/back sway in the upper or
lower back (there is supposed to be some, but an excessive amount can
indicate related diseases like kyphosis). Think of it as preventive
maintenance, but nothing to be paranoid about. Good luck!
Lorena

Joanne:
You have several options for your daughter right now, as she is a
minor. Check out this page for a list of places you should start,
including Healthy Family and Public Services (I guessed you are in
Cali?):
http://lapublichealth.org/wwwfiles/ph/hae/ha/lahealthchildins_0204.pdf
Also, after you see what she is eligible for, check in with the
Shriners. They provide services free-of-charge for needy children,
and may even be able to help with travel expenses if there isn't a
Shriner's Hospital near you. They are a wonderful group that has
served millions of kids for free. They can get her in a brace, do
surgery, or whatever her needs are. If she doesn't need treatment
now, they may be able to just do checkups to make sure it doesn't get
worse, especially given that her mother's progressed so far.
As far as yourself, I'm not sure if there is a state health care
program in your area for underemployed adults, but you should check
with your local Dept of Health and Human Services to see. If not, or
if your income is still too high for that, definitely start your
application for disability now as that can be a lengthy and paper-
heavy project.
Good luck!
Lorena

Thought you might find this of interest

Hi Mike

I also have a short torso, think my legs are longer than my body, I should be about 3" more than my 4' 10". I think I was 4' 11" a few years ago. I have been wearing a ventilator at night for 8 years so not sure whether my curve became worse before then or whether its stayed stable.

I find I lose balance easily too, think a few other people with our condition will say the same. It may be due to our shape being a bit twisted.

Take care anyway.

Best wishes

Liz

HI Mary

My stomach also sticks out more due to the rotation of my ribs, so I can't bend down and touch my feet either.

I can't stand for long periods, I also can't lift or carry heavy items or I get terrible back pain.

TAke care

Liz

HI Mary

Sorry that you feel self-conscious about your scoliosis. I used to lack confidence a lot more, I am 38 years old, I now keep in touch with several people suffering from scoliosis which does help. I've been advised to buy clothes a bigger size so that my hump doesn't notice as much.

I too get frustrated that I can't wear the clothes in the shops which look nice on hangers but cling to me or are see through.

I have been told that you've got to like yourself, which I think is true, I'm sure your back isn't as bad as you make out, do something to make you feel better, listening to other people's problems on this site will help too.

I don't always feel people understand, you've got to try and tell yourself you're as good as them others or better.

Take care

Liz

Hi Liz,

I was reading about you being braced for 61/2 years. About your surgery, can I ask how you got it payed for. I have researched everything. The only way I can think of being able to get this surgery, is to get on partial disability for it so that it can be payed for. I can only work part time and I can barely stand up to that. I stand on my feet 6 hours a day, 3 days a week and it hurts my back so bad. I need this help not just for myself, but for my daughter as well. She has been diagnosed with it about a year ago. She is 13, you can't really see it very well yet. If I got this medical coverage that I so desperately need, I think that I could cover my daughter as well. I heard about a small thin wire of some sort that they insert into minors now to prevent any curvature from taking over by my physician.

I am 37 and I could lose up to 20 years of my life if my back gets to the ultimate curve that would threaten my health. My left hip sticks up and out a lot now and it is getting very uncomfortable to live this way. Because of this I now have anxiety disorder really bad. I am scared of it turning into asthma.

Could you tell me how you got your surgery payed for. I should have thought of asking someone in this group this question a long time ago. Thanks for reading my story. I hope to get a response from you soon.

Thank you,

Joanne

<piglet28266@...

HI Amy

Sorry you feel self-conscious about your rib hump and that you don't feel people understand.

I don't always feel people understand either, I have a rib hump too which makes it difficult to buy clothes. I was braced for 6 1/2 years from 4 1/2 to 10 before I had the Harrington rod fitted. I had cosmetic surgery at the age of 17 years, it reduced the rib hump slightly. Six years ago I had to have the rod removed as it had become infected.

If you wish to ask me anything please feel free to do so.

Best wishes

Liz

HI Amy

Sorry you feel self-conscious about your rib hump and that you don't feel people understand.

I don't always feel people understand either, I have a rib hump too which makes it difficult to buy clothes. I was braced for 6 1/2 years from 4 1/2 to 10 before I had the Harrington rod fitted. I had cosmetic surgery at the age of 17 years, it reduced the rib hump slightly. Six years ago I had to have the rod removed as it had become infected.

If you wish to ask me anything please feel free to do so.

Best wishes

Liz

The problem I am having concerns getting into certain internet sites, I have deleted my temporary internet files.

I am using Freeserve Broadband, I am finding I cannot get into certain sites, it comes up with "that site cannot be found, try spelling the word differently" I have checked the spelling and it is correct. Other friends have been able to find the site. I had to find www.rowlandhome.co.uk through the Ask Jeeves site. I now have difficulty in finding www.wendyguervara.com. Can someoneplease let me know why I cannot find sites that other people can.

I am using Freeserve Broadband, windows XP.

Many thanks

Liz

hi my name is steve,and i live in nyc. my daughter,julieanne,will be 11
next month,and i wonder if my wife and i should have her screened for
scoliosis. i am not sure if theres a family history of it,and i havent
noticed anything different about her posture.

hi steve :) i think that you should have your daughter screened. i never noticed my scoliosis when i was 11 until i got screened and then i didnt do anything about it for 3 yrs and its a lot worse now. so if she does have scoliosis its better to look out for it instead of waiting to see if it will show up by itself. hope this helps with your decision.

Natalie-
steven alan abernathy <steveabernathy2003@...

hi my name is steve,and i live in nyc. my daughter,julieanne,will be 11
next month,and i wonder if my wife and i should have her screened for
scoliosis. i am not sure if theres a family history of it,and i havent
noticed anything different about her posture.
Thanks to my entire family for standing by me and helping me sort out this computer stuff.
And most of all the person upstairs. He has helped us through many hard times as he will anyone.

Please could you explain exactly what rigid scoliosis is, as I have only just heard about it today.

Other members may be interested to know too, its surprising how many types of scoliosis there are?

Many thanks

Liz

Hi everyone, I had my first scoliosis surgery back in 1986, they put in Harrington Rods, and fused the upper portion of my spine -- I have 4 vertebrea on the bottom of my spine that are not fused, and I am having a lot of pain in the lower back, becouse those vertebrea are wearing out -- the doctor has mention doing surgery, to fuse the lower portion of the spine, and to put in a longer rod -- what experinces has you all had with this, and how much pain releaf would I be able to get from this -- right now the pain is so bad in the lower back that I have not been able to work for about a week now -- I do have pain in the upper back as well, but I can deal with that. I do know that I need to figure out some way to deal with the lower back pain that does not involve taking the pain meds that I am on -- becouse with taking them, I really can't do a whole lot, about all I can is sleep when I am taking those.

I do know that if I end up going with the surgery option, I will have to have it fairly soon, while I still have insurance.

Any adivse anyone can give me would be greatly appreciated.

Thanks,

Scott

P.S. -- I start pysical therapy tomorrow -- going to try that again and see how thing go, last time I went thorugh that, nothing really changes, but it did not get any worse, so I guess it was good just to get the extra excerise in.

Authentication required.

Liz,

I was going to get a milwaukee brace , but the dr decided to give me tlso (goes from my hips to armpits). we're going to see if it gets any worse before deciding on surgery. i will keep you updated. hope u are feeling well.

natalie = ]

liz <piglet28266@...

Hi Natalie

Sorry for the delay in replying to your email about having a back brace or surgery.

I am 38 years old, I wore a milwaukee brace from the age of 4 1/2 years to 10 years, and had a Harrington rod fitted in Scotland at the age of 10 years. If I hadn't had either treatment I would probably be very bent over by now with even more health problems. I would certainly recommend surgery or a brace especially while you are young and can recover quicker.

I lead quite an active life despite my disability, I'm not sure what I would have been like without any treatment.

If you have any more questions please contact me.

Best wishes

Liz (UK)

Hi Natalie

Sorry for the delay in replying to your email about having a back brace or surgery.

I am 38 years old, I wore a milwaukee brace from the age of 4 1/2 years to 10 years, and had a Harrington rod fitted in Scotland at the age of 10 years. If I hadn't had either treatment I would probably be very bent over by now with even more health problems. I would certainly recommend surgery or a brace especially while you are young and can recover quicker.

I lead quite an active life despite my disability, I'm not sure what I would have been like without any treatment.

If you have any more questions please contact me.

Best wishes

Liz (UK)

I am a 38 year old male.Just found out I have scoliosis a couple
weeks ago. Went to doctor because starting getting back pain for no
apparent reason which began to go down my right leg and cause my
foot to go numb.Xrays ,cat scans,and mris revealed dextro scoliosis
in the lumbar area .the curve has casued a disc in l3 vertabrae to
bulge and press against a nerve root. The nerve root is
inflammed.The xrays revealed that the scoliosis was present my
entire life,just went un noticed until now.THe curve is caused
because on one of my vertabraes I have 2 pedicles on one side rather
than one which cause the curve.I have seen a neurosurgeon who
suggested we try to avoid surgery if at all possible because it
would be very complex and chances are I'd have more problems
afterwards than I do now.First thing they are going to try is an
injection or nerve root block.At the end of this month they have me
scheduled to go in and using xray ,they will pin point area,and
inject an inflammatory type medication to reduce swelling in the
affected nerve area.This is not a cure but a hopes for pain
management so I can hopefully go about normal activities such as
standing and walking which right now I cannot.I am on oxycontin for
pain. If I am sitting down,I usually am ok other than a tightness
feeling.As I stand or put body weight on nerve,the pain is so
unbearable ,I need to sit down.In most cases ,the pain then
diminishes soon after I sit back down,and goes back to just a
tightness in lower back area.I'm getting to point where looking into
renting a wheelchair.Has anyone ever had a nerve block injection ?
Is it risky? Did it help?What can I expect for relief and how long
will it last?Will I be sore after getting the injection?
Thanks

Hi Misteiye

Hi Liz,

How does your scoliosis affect your job performance? Are you having trouble sitting or standing for long periods of time due to pain? I suggest you get a note from your physician or back specialist about why you need reduced hours. Things like this always go over better with a doctor's note than with us making this demand on our employer.

Good luck!

Debbie / WA

piglet28266 <piglet28266@...

Hi
As I may have told you previously I gave a letter to my boss several
weeks ago now regarding Saturday morning working.
The letter advised the company that I should be allowed to reduce my
hours to 5 days a week rather than to also include 1 in 3
Saturdays. However no confirmation of the agreement has been given
to me as yet, I have had to photocopy the letter and give the
photocopy to my office manager.
I walked out of the office upset when I originally gave the letter
to the boss as he said that I had to cut my hours to do a Saturday.
What do you suggest I do next, as I said before I have reduced my
hours to part-time, therefore my full-time contract statijng that I
should work a Saturday is no longer valid. Several other employees
do not work a Saturday.
Many thanks
Liz

Hi
As I may have told you previously I gave a letter to my boss several
weeks ago now regarding Saturday morning working.
The letter advised the company that I should be allowed to reduce my
hours to 5 days a week rather than to also include 1 in 3
Saturdays. However no confirmation of the agreement has been given
to me as yet, I have had to photocopy the letter and give the
photocopy to my office manager.
I walked out of the office upset when I originally gave the letter
to the boss as he said that I had to cut my hours to do a Saturday.
What do you suggest I do next, as I said before I have reduced my
hours to part-time, therefore my full-time contract statijng that I
should work a Saturday is no longer valid. Several other employees
do not work a Saturday.
Many thanks
Liz

I went for a checkup to Stanmore Royal Orthopaedic Hospital on
Friday, after being referred there by another general hospital in
Ipswich. I had my rod removed there 6 years ago as it had become
infected, I have recently been gettiing jaw and ear pain for which
the GP has given me painkillers.
I was rather disgusted at the way I was treated, I had been referred
there from Ipswich so they could make a special cushion or some type
of support for my back, I find that where I have the hump I get
redness from the pressure and sometimes find it difficult to sit
comfortably.
I had the x-ray at Stanmore, my boyfriend came with me. I then went
to see the consultant. I took the tablets I had been prescribed for
the ear and jaw pain. The consultant asked what was wrong and I
said I had been having jaw and ear pain and pressure sores, before I
had hardly finished speaking he said that the jaw and ear pain was
due to an abcess in my mouth and he started dictating that I was to
be referred to the dentist. He briefly looked at my back and said I
needed physiotherephy. My boyfriend asked him about me being signed
off work and he said no he couldn't do that!! I asked the
consultant if I needed to see him agaiin and he said no only if I
have problems, that's what I went for, I expected a bit more help!!
I went to the GP today, my boyfriend is stay8ing for a few days so
he came with me. The GP looked in my mouth and confirmed there was
no abcess, he was warned what the letter would say about me being
sent to the dentist! I was asked to go back to my GP when the
letter is received by them from Stanmore.
I was really surprised as I thought Stanmore was the best scoliosis
hospital and they have treated me OK previously!
Hope you are all OK.
Lizzie

In my case, I receive at least one email a day that
has an attachment, which I DO NOT OPEN. It goes
straight to trash. There can not possibly be anything
of value in an attachment for a group such as this.
If you are receiving everything as attachments, then

Hello all,

Why do most replies and e-mails going threough this listr show up as attachments? I cannot open attachments and wish they would come as regular e-mails. I have to just delete a lot of mail.

Thanks, Debbie

So how did that rod removal go? How are you recovering? Did you
feel it was as intense as the original surgery? Did they warn you
about any sort of complications in having the rod removed (other than
the usual major surgery risks?) How do you feel so far?!
I hope you are well, soon!
Lorena

Hi Amber

Sorry for the late response to your email sent in April. You must be very anxious regarding your back with the pains you have been having. HOw did you get on with the orthopaedic surgeon in April?

I'm not a Dr however the sensations you have been having may be a trapped nerve or nerves. I have had muscle and nerve pains more since having my rod removed 6 years ago as it had become infected after 28 years. I have had physiotheraphy which has helped, I was also given anti-inflammatories recently to try and ease the nerve pain recently.

I am going to the Middlesex Hospital near London where I had the rod removed this Friday as I have been having more pain lately. I know the pain can be really bad sometimes so if you want to discsus your pain with someone I'd be happy to assist. I think it's worse not knowing whats wrong than knowing the cause sometimes.

Good luck and take care, look forward to hearing from you if you wish.

Liz

(UK)

.

Welcome, Thea. Glad you "got it together." It sounds like you are
in good health and that you are doing what you can to take care of
your body. Exercise is a great thing except when it is overdone. I
think you'll find a few people here with similar backgrounds, too.
Lorena

elizabeth howard <elizabethhoward66@...

From: "elizabeth howard"
To: lizjhoward1966@..., lizhow66@..., piglet28266@..., elizabethjhoward@..., lizmar@..., RainbowTears@..., SpinaBifidaSocialCentre@...
Subject: FW: Virus Warning
Date: Fri, 25 Jun 2004 15:13:15 +0000

liz

Hi, my name is Thea.
I'm 48y.o. and was diagnosed at age of 15 (by then it already was
bad). If my back were straight I'd be about 5" taller.
I wore the brace.. but threw it out at age 16, as it just didn't
seem to do anything but keep me from living my life.
I was told I needed surgery, but after going to many doctors the
last one told me that my body was normal, for me. It had grown that
way and adjusted.. so surgery was not in my future, as it was my
decission to do it, or not.
I was told I couldn't have children, as there was nowhere for them
to grow.. I had 2, naturally. I was told at age 35 I'd be hunched
over and have a hard time breathing.
I'm 48, own a business where I lift up to 50lb packages on a daily
basis.. I wouldn't recommend this, but that's my life.
I used to drink, smoke and do drugs. . the drugs started with the
brace. Now for 5 years I don't do any of those things. And, the most
important thing! I lift weights. I have a personal trainer. I've done
weight lifting in the past and found that my back didn't hurt if I
did this. Strengthens the muscles and gives my back more support.
Now I've heard doctors say not to do this, but it's been my life
saver.. Swimming too, has been a great help.
Thea

Hi Sherry

Sorry for the late response to your email.

I no longer go to the GP who upset me saying I must press on, I was really annoyed when I think of the people who can work who don't work. I now go to another GP in the surgery, there are about 6 I don't mind seeing. They don't all understand about scoliosis.

I have been wearing a ventilator for 8 years to keep my oxygen level stable, I use it at nigth while sleeping. I go for sleep studies about once or twice a year, my next sleep study is on 14 July if there's a bed. Do you go for sleep studies? I am 38 years old, was 30 years old when I started wearing my ventilator.

Thanks again, take care

Liz

Liz

remove my email

[INLINE] GOTTA BE ME [INLINE]

I had a question I've had scoliosis since I was 13, all of a sudden
my body feels weird. I get these sensations all over my body along
with tingling and sometime muscle twitches and like something is
crawling over my skin, anyone else with similar symptoms. I recently
started intense yoga and notice all these symptoms happen right after
class. I'm wondering if I over did it with my back and the nerves.
Thanks for any replies.
Olivia

Very Important!!
During the next several weeks be VERY cautious about opening or launching any
e-mails that refer to the World Trade Centre or 9/11 in any way, regardless
of who sent it. PLEASE FORWARD TO ALL YOUR FRIENDS AND FAMILY. FOR THOSE WHO
DON'T KNOW, "WTC" STANDS FOR THE WORLD TRADE CENTRE. REALLY DANGEROUS BECAUSE
PEOPLE WILL OPEN IT RIGHT AWAY, THINKING ITS A STORY RELATING TO 9/11!
BIGGGG TROUBLE !!!! DO NOT OPEN "WTC Survivor" It is a virus that will erase
your whole "C" drive.. It will come to you in the form of an E-Mail from a
familiar person.
Forward this to everyone in your address book. I would rather receive this 25
times than not at all. So, if you receive an email
called "WTC Survivor," do not open it. Delete it right away! This virus
removes all dynamic link libraries (.dll files) from your computer and your
computer will not start again.
PLEASE FORWARD THIS MESSAGE

Lynne - Tinlid56

http://au.msnusers.com/TINLID56

I came out crying from work today.

I work part-time hours, 9 am to 3 pm, reduced last year as I found a full day too much, I am disabled. Under my previous full-time contract I had to work one in 3 Saturdays however I have not had a new contract for part-time hours and am finding 6 days a week too much when I do them.

I was advised by one of the Manager to obtain a letter from a Dr stating that I should cut my hours to 5 a week. It was thought that this would be sufficient, however my managing director has given me a lecture today saying that he needs me on a Saturday morning that I should cut my hours even more so that I| can do a Saturday morning (this would mean another reduction in salary, I don't get paid that much now). He said that I am not busy a lot of the time and taht I have to go in on a Saturday to suit him. Some days I have 6 tapes which I get through fairly quickly, he doesn't think of that only the days when I may be sitting around more due to a manager being on holiday.

I was rather hurt, there are several members of staff who don't do a Saturday morning including full-timers, and some of the part=timers who do either get paid extra or they only do about 1 in 9 (which suits them). I only have one lady to cover for me, they have about 6 downstairs to cover each other! I am an audio typist using my back, legs and concentration while the others use the phone and speak to customers, I work at an Insurance Brokers.

I have been at my job 13 years, one girl has just come back after leaving 6 months ago, she has refused to do Saturdays and only does 3 days a week, she helps the insurance broking side too.

Over the years I have been to work with breathing problems,a lot of back pain and I have worked on my own for about 13 weeks doing a lot of work without any help. I wasn't well myself at the time. I wear a ventilator at night for breathing problems. I now feel very bitter about the whole situation.

I look forward to your comments.

Thanks a lot

Liz

I think your experiences are common. Having to wear a brace at a
most vulnerable time, when our bodies are changing and we (and our
peers) are much more aware of our bodies, and critical of our bodies,
is very, very difficult.
Many scoliosis patients become "over-achievers" to try to compensate
for what they feel they lack in control over their own bodies, but
that is not mentally healthy either, and those people have difficulty
accepting themselves as is. I think many of are a combination of
over-achiever and under-achiever because we try to overdo it when we
find something we are good at but we don't like to draw attention to
ourselves if it is something in which we might fail or in which
our "faults" might be more visible.
In addition, it is very common for youth who have lack self-
confidence to turn to crutches, whether substance abuse or misuse of
their own bodies, to try to validate themselves as worthy,
pretty/sexy, etc.
I avoided the teen problems by adopting a kind of
Pollyanna/Cinderella outlook that still gets me by when things are
rough. I fantasize about how much worse things "could" be and how I
would cope or how wonderful it will be when things start to go my
way. In my young adult years, however, I made less than admirable
decisions that were firmly rooted in a big lack of confidence in
myself.
We can't undo what we did or felt back then, but we can recognize it
and address it now so we can develop a healthier outlook and more
balanced life from here on out. It sounds like you are doing just
that, and I wish you the best of luck. I think you might find some
kindred spirits here.
Lorena

Hi Misteiye

Sorry for the late reply back to your email about my scoliosis and the unsatisfactory GP.

I have now been referred to Stanmore Orthopaedic Hospital in Middlesex to have my scoliosis checked on again, I went to Ipswich Hospital, Suffolk in April and they said their equipment wasn't specialised enough to deal with scoliosis.

I am going to Middlesex hospital on 2 July.

I hope you are not having too many health problems.

Take care

Liz

Although I can't really relate, I kind of understand.

I haven't had anything to do with hy scoliosis yet. No surgury, no back brace. And I'm sure if I did have one in high school, I probably wouldn't have done everything I've done. I now have teeth braces, which I'm 19 and I know it's slightly older than the normal age a person has braces, but I know I would have been terribly more shy and less active. Nonetheless, my classmates voted me "Most Shy" for the senior poll, which I found rediculous. I was quiet, but certainly not shy. What shy person is highly active in Drama Club, orchestra, and Speech?

Anyways, I'm well on my way preparing for an acting career, despite my teeth braces. And I'm considering doing something about my scoliosis. But had I done anything about both these things when I was younger, I probably wouldn't be where am I now. So, I believe, that it's fine to blame scoliosis. Perhaps not 100 percent, but yeah, sure.

Well, that was kinda opposite your situation...or something...but I still get it.

~Alysia
rebeccamartint <rebeccamartint@...

In many ways I was lucky with the scoliosis. I'm 44 years old, and
was first diagnosed with a 28 degree thoracolumbar curvature when I
was around 12. It progressed to 38, and I wore the Milwaukee brace
for all my highschool years.
My back is o.k at this point, cross fingers, although it is subject
to stress so I have to be careful of it. In the respect that I
haven't had physical pain like a lot of the people I see on this
board and others I have been fortunate. However, in other respects
my life has not been all it could be. I'm not sure if I can blame
the scoliosis for this, however.
In addition to having the scoliosis, I've always been a person who
is in ways perceived as different from others. In highschool when I
wore the brace I became very shy, almost mute. I feel I missed a
lot of stuff becuase I didn't date much, although I did participate
in some of the other teen "hobbies" such as alcohol and pot. But I
really never regained the level of academic achievement that I had
shown potential for earlier. I was distracted, mostly living in a
fantasy world that my life was one way when it was actually another,
and became a hypochondriac. This was not a normal teen pursuit.
At any rate, I did attend college but was never really able to get a
career going for myself. My problem is not the physical appearance
as this is barely noticeable to most people. In fact, when I found
my financial situation to be suffering, I turned first to massage
then "professional escort" work. I also in these years have not
ever married. I've had a few relationships, but they haven't really
gone that well.
I'm not sure, as I've said, that this is relevant to the scoliosis,
but I'm just wondering if there's anyone else out there who can
relate to this story or am I kind of not fitting in here also?
Thanks to my entire family for standing by me and helping me sort out this computer stuff.
And most of all the person upstairs. He has helped us through many hard times as he will anyone.

In many ways I was lucky with the scoliosis. I'm 44 years old, and
was first diagnosed with a 28 degree thoracolumbar curvature when I
was around 12. It progressed to 38, and I wore the Milwaukee brace
for all my highschool years.
My back is o.k at this point, cross fingers, although it is subject
to stress so I have to be careful of it. In the respect that I
haven't had physical pain like a lot of the people I see on this
board and others I have been fortunate. However, in other respects
my life has not been all it could be. I'm not sure if I can blame
the scoliosis for this, however.
In addition to having the scoliosis, I've always been a person who
is in ways perceived as different from others. In highschool when I
wore the brace I became very shy, almost mute. I feel I missed a
lot of stuff becuase I didn't date much, although I did participate
in some of the other teen "hobbies" such as alcohol and pot. But I
really never regained the level of academic achievement that I had
shown potential for earlier. I was distracted, mostly living in a
fantasy world that my life was one way when it was actually another,
and became a hypochondriac. This was not a normal teen pursuit.
At any rate, I did attend college but was never really able to get a
career going for myself. My problem is not the physical appearance
as this is barely noticeable to most people. In fact, when I found
my financial situation to be suffering, I turned first to massage
then "professional escort" work. I also in these years have not
ever married. I've had a few relationships, but they haven't really
gone that well.
I'm not sure, as I've said, that this is relevant to the scoliosis,
but I'm just wondering if there's anyone else out there who can
relate to this story or am I kind of not fitting in here also?

liz <piglet28266@...

Date: Tue, 8 Jun 2004 20:46:59 +0100 (BST)
From: liz
Subject: Fwd: NEW NAME
To: misteiye@...

liz <piglet28266@...

Date: Tue, 8 Jun 2004 20:45:34 +0100 (BST)
From: liz
Subject: NEW NAME
To: mistelye@...

HI Mistelye

Sorry you had to change your name and sorry also for your health problems.

It must be a worry for you having a tumour too.

Sorry about Russ having hernias too, glad that his medication is working.

Good luck with your driving, have you managed to start again yet?

I am 38 years old and have scoliosis, I have had operations on my spine including a rod fitted and removed so I know about surgery if you wish to talk to anyone, I wore a brace for 6 1/2 years before I had my rod fitted at the age of 10 years.

Keep your chin up and look forward to hearing from you soon.

Take care

Liz

Dear Friends
Hello I am Gulnaz from Russia. My age is 29 year old. I am from
Russia (city: Ekaterinburg).
My Short Profile is:
I am looking for life partner in rest of World. My Detail Profile &
Pictures is given below.
Detail Profile at
http://www.myelove.com/profiles/gulnaz/gulnaz.htm
Regards
GULNAZ
From Russia

HELLO!
im still getting worms in the mail from this group.
the attachment about the man upstairs and thanking
family.
DO NOT OPEN IT
the moderator should have switched the group to no
atachments by now, and should have also deleted the
worms from the archives.
what gives?
do i have to quit this group? i must admit i have had
some recurring files show up but the first one was

http://gothicangel.true.ws/
JUST FOR YOU!!!Hot & Sexy..Adventurous..Faithful..

Liz, suffolk county NY? I live in Nassau county NY and did insurance
for 12 years still keep license. Hate it so much so I got away from
it. I also found that for some reason that field has no heart
whatsoever. Look for pt work elsewhere that is my advice. If you
fight with them they can make your life miserable in other ways. If
you really want to stay there contact the advice of an attorney or
call the labor board for advice. Good luck. I know sitting all day
kills my scoliosis.
\mary

Steven, I applaud your courage to admit your problem with drugs and
more so that you are seeking help to fight it. I do not know enough
about the effects of methedone if you were to seek another outlet
for your pain. I also understand how self consiece you are about
your back. I am a 44 year old female who tries my best to hide my
back. I also am sorry about you losing your partner. I hope you find
the help you are seeking. It sounds to me that your inner pain is
greater than the pain of scoliosis itself.
mary

I work for a certain Insurance Brokers as a typist in Suffolk..

I am having a disagreement with them at the moment regarding my working hours.

I have scoliosis which causes breathing difficulties and makes me tired very quickly. I was working full-time for 12 years but went part-time last November as I was finding full-time hours too much. I have not received a new contract since going part-time.

My previous full-time contract stated that I had to work Saturday mornings, however I now find this very difficult due to my breathing problems and tiredness. I am due to go back to Stanmore on 2 July as they are concerned about my back, I have been having a lot more pain recently and am now on permanent pain relief.

I would point out that there are several members of staff within the company who do not do Saturday mornings, (these are both part-time and full-time staff). I therefore feel that I am not being treated fairly, I do not get paid for the Saturday mornings anyway!

I look forward to receiving a response from anyone who may be able to help

Many thanks

Liz .

Many thanks

I am having problems deleting some messages in Incredimail!

The message cannot be read or deleted, the egg timer comes on and it says not responding.

Please help

Thanks

Liz

At http://scolionet.com/links.htm

I think the common-sense rule of thumb here is: don't
open ANY attachments in this group. There really is
no reason for anyone to send an attachment, therefore
whenever I see one, it just gets deleted immediately.
I belong to another group that permits NO attachments;
they are automatically deleted before it gets to the
inbox. The moderator was persuaded to allow
attachments on a trial basis, and within 15 minutes of
doing so, a virus was sent to the group. So, when in
doubt, toss it out!
Mike

i think you will need to delete the messages from the archives
that have the worm virus in them. I'm not sure about this, but it
would seem that the virus wouldnt be eliminated until that
happens. When I looked to see if the messages originated
from the same address, I noticed them in the archives.
If members set their memberships to "digest" they can avoid
attachments.
the other thing is, to set the group to "no attachments".
you can always change it back, if you want.
I own one group, and moderate two others. I am not however
well versed in viruses.
steven

Hello,
I wonder if anyone else is experiencing a recurring email called
"Details".
-it says "life with scoliosis" in the subject area
-it comes with an attachment
here's the problem, it's got a virus.
myself, I'm using a macintosh computer, so i'm told i dont have
to worry about viruses, but perhaps the sender should konw that
his/her personal computer is probably infected.
This e mail seems to be coming thru the group, so I'm guessing
you all are getting something also.
steven

Hello Rachel,

My name is Misteiye60.and Ihave had scoliosis been diagnosed just a month ago. So this is all new to me. However I think I have had this since I was 13 yrs. I am now 41 (at the end of this mo.) I am moving to Cottage Grove OR. this week and then will hopefully be able to rest. My husband is a ig help when he is not worried about the moving date. He is worried about the amount of trips to the ER trips I have been taking in one and two mos. though. and that is a huge bother to me. I see him being dragged down and I need him to be strong for me but now I guess I can only have the help from my group friends. I am constantly in pain in my back. I am starting to just get used to it. I was recently told that I also have Carpal Tunnel and the results at the trip to the ER last night were'nt good.

So now I just scream at night.I dont know what to do now.

My own doc only gives me pain meds for at home. No narcotics. I agree for not wanting to get me hooked on them but I need them sometimes for the really bad times. We shall see when I go in tomorrow if he will make some kind of better plan that will for sure work. I sure hope so!

I like you am so fed up with this! [INLINE] [INLINE] [INLINE]

Lorena have you tried the racer back style that seems to help a
little. I cannot stand underwire either as it digs into my slightly
twisted frame. strapless always seems to slip and slide on me

I have always hated the sliding shoulder strap problem posed by
bras. With the newer technology, I have finally found some strapless
bras that work for me. They use this clear stuff to outline the
inside of the bra, and it helps keep it in place better (necessary
for smaller girls like me). I wear a strapless almost all of the
time now, and never ever have to deal with those stupid flagging
straps that p