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handy
06-26-2013, 05:00 AM
Hello fellow scoliosis-mates,

I really don't know what to say, just brought my x-rays and wish someone would help me with the decision

28 years old with scolio-kyphotic deformity affecting mainly the dorsal spine with convexity to the left, this is what is written on the report

Can anyone here estimate the degree or cobb angle for me please?

And if anyone had a somewhat similar degree of curvature< what was your decision regarding the surgery?


Thanks and sorry for this weird way of writing, still nervous after the doctor told me I have to do the surgery, he's not a scoliosis specialist but referred me to another hospital that's about 600Km from where I live

rohrer01
06-26-2013, 11:30 AM
Welcome to the forum, Handy!

While I'm not going to guesstimate the degree of your curvature, there are some things that, as a fellow "leftie", that I can tell you.
Left curves are relatively rare and can come with their own set of problems. There is a much greater incidence of other neurologic problems with a left curve. These include things like Chiari malformations (brain herniation), Syringomyelias (fluid within the spinal cord), and spinal cord tethering (spinal cord being physically attached to adjacent tissues). So when you go to see your specialist, please ask him/her to rule these things out.

It looks like the apex of your curve is mid-thoracic but extends up into the neck. I have a very high left curve that goes into my neck as well. The apex of my curve is much higher than yours, but my curve magnitude appears much smaller. I will post my x-ray so you can compare. I also developed a right thoracic compensatory curve that has turned into a structural curve. This means that I no longer have a single curve but a double major curve, although it started out as a single left thoracic curve. I hope this has been helpful. Here is my x-ray showing a 46* (top left thoracic) and a 38* (low right thoracic):

1500

I hope this helps!

LindaRacine
06-26-2013, 10:36 PM
Handy....

Unfortunately, you're really the only one who can make the decision. Your curve is a bad one, and because it's so high, I suspect it will probably be pretty painful if it's not already.

Scoliosis surgery is really major, and comes with a relatively significant risk of complications. You need to do some research. This is a good place to start, but I'd also like to recommend that you purchase and read the book Scoliosis Surgery: The Definitive Patient Reference (http://www.curvedspine.com/about.htm). Though no longer completely accurate, it can give you a fairly good idea of what to expect from surgery. Once you've met the new surgeon, I would also ask him/her for contact information for a few patients who have undergone similar procedures. They'll be able to give you an even better idea of what sorts of things to expect.

Best of luck with your decision and your journey.

Regards,
Linda

titaniumed
06-27-2013, 12:12 AM
Yes, it looks painful....

How long have you known about your scoliosis? Are you just finding out?

I was a surgical candidate in 1975 and waited 34 years.....I’m not saying wait 34 years, but take your time to get all your ducks in a row so you can sort all of this out.....Reading the Wolpert book as Linda recommends is a good idea for a start.

Your curve is in surgical range...if I had to guess, I would say you have a 60 degree plus Cobb angle....but its best to have a scoliosis surgeon measure them for you.

If you have any questions, any at all, go ahead and ask them. I know your nervous, its completely normal to feel this way.

Welcome to the forum

Ed

handy
06-27-2013, 05:39 AM
Wow, thanks for all the support



Welcome to the forum, Handy!

While I'm not going to guesstimate the degree of your curvature, there are some things that, as a fellow "leftie", that I can tell you.
Left curves are relatively rare and can come with their own set of problems. There is a much greater incidence of other neurologic problems with a left curve. These include things like Chiari malformations (brain herniation), Syringomyelias (fluid within the spinal cord), and spinal cord tethering (spinal cord being physically attached to adjacent tissues). So when you go to see your specialist, please ask him/her to rule these things out.

It looks like the apex of your curve is mid-thoracic but extends up into the neck. I have a very high left curve that goes into my neck as well. The apex of my curve is much higher than yours, but my curve magnitude appears much smaller. I will post my x-ray so you can compare. I also developed a right thoracic compensatory curve that has turned into a structural curve. This means that I no longer have a single curve but a double major curve, although it started out as a single left thoracic curve. I hope this has been helpful. Here is my x-ray showing a 46* (top left thoracic) and a 38* (low right thoracic):

1500

I hope this helps!

Thank you very much rohrer for the information regarding those complications specific to lefties and your x-ray for comparison, my current doctor told me that it isn't that bad because it doesn't have a sever curvature as the curve extends to form a C shape, I took note of what you mentioned and will ask the surgeon about them, although I had an MRI scan previously but they didn't mention anything apart from the curve.

What are your plans about your curves? are you considering surgery?

Thanks again,
Ahmed


Handy....

Unfortunately, you're really the only one who can make the decision. Your curve is a bad one, and because it's so high, I suspect it will probably be pretty painful if it's not already.

Scoliosis surgery is really major, and comes with a relatively significant risk of complications. You need to do some research. This is a good place to start, but I'd also like to recommend that you purchase and read the book Scoliosis Surgery: The Definitive Patient Reference (http://www.curvedspine.com/about.htm). Though no longer completely accurate, it can give you a fairly good idea of what to expect from surgery. Once you've met the new surgeon, I would also ask him/her for contact information for a few patients who have undergone similar procedures. They'll be able to give you an even better idea of what sorts of things to expect.

Best of luck with your decision and your journey.

Regards,
Linda

Hi Linda,

It's pretty painful in the neck region now, as you can see some Cervical vertebraes are rubbing each other

I know my curve is bad but again hoping to avoid the surgery or delay it as much as possible, can't imagine what and how it will affect my life later, If I could get the curve reduced a bit to make the surgery unnecessary will be enough for me.

Thanks for the book, I have just bought the kindle edition from Amazon!


Yes, it looks painful....

How long have you known about your scoliosis? Are you just finding out?

I was a surgical candidate in 1975 and waited 34 years.....I’m not saying wait 34 years, but take your time to get all your ducks in a row so you can sort all of this out.....Reading the Wolpert book as Linda recommends is a good idea for a start.

Your curve is in surgical range...if I had to guess, I would say you have a 60 degree plus Cobb angle....but its best to have a scoliosis surgeon measure them for you.

If you have any questions, any at all, go ahead and ask them. I know your nervous, its completely normal to feel this way.

Welcome to the forum

Ed

Hi Ed,

I have known about it about 13 years ago, unbalanced shoulders and people thought it was just me not wanting to stand straight!!

The doctors at that time told me I could live with it normally if I don't care about the hump, but things don't go as wished and I have been in a constant pain for about 2 years now from the cervical vertebraes rubbing each other.

I do have some questions,

1- How long will a surgery take on average?
2- How long will you be in pain after the surgery? i.e. when will you be able to resume your normal life?
3- Will I be able to play some sports like volleyball, basketball and football "soccer" after the surgery?


Unfortunately one of the reasons that make me hesitant to have the surgery is that in my work I have been notified that I should resign if I opt for the surgery as the doctor informed them it will take no less than 6 months for recovery

Pooka1
06-27-2013, 07:02 AM
This means that I no longer have a single curve but a double major curve, although it started out as a single left thoracic curve.

Hi Rohrer. If both your curves are in the thorax then I think it is a Lenke Type 2 - Double thoracic. Double majors (type 3) require a structural curve in the lumbar and you don't appear to have any curve, structural or functional, in your lumbar.

http://spinal-deformity-surgeon.com/a-leader-in-spinal-deformity/lenke-classification-system-for-scoliosis/

rohrer01
06-27-2013, 12:07 PM
Hi Rohrer. If both your curves are in the thorax then I think it is a Lenke Type 2 - Double thoracic. Double majors (type 3) require a structural curve in the lumbar and you don't appear to have any curve, structural or functional, in your lumbar.

http://spinal-deformity-surgeon.com/a-leader-in-spinal-deformity/lenke-classification-system-for-scoliosis/

Thanks for that information. I'm just going by what the surgeon told me. Although my curve extends into the L2 region, the rib hump deformity is very high, starting just around the bottom of the right scapula. The left rib hump extends from under the left scapula into the lower neck making my traps look really big there.

Pooka1
06-27-2013, 12:16 PM
Thanks for that information. I'm just going by what the surgeon told me. Although my curve extends into the L2 region, the rib hump deformity is very high, starting just around the bottom of the right scapula. The left rib hump extends from under the left scapula into the lower neck making my traps look really big there.

I believe these are labeled according to the apex. You have no curve apex anywhere near your lumbar region which looks completely straight to me. If you look at the Lenke curve type chart, the surgeon clearly misspoke. You have a double thoracic, not a double major curve type, no?

rohrer01
06-27-2013, 12:58 PM
Thank you very much rohrer for the information regarding those complications specific to lefties and your x-ray for comparison, my current doctor told me that it isn't that bad because it doesn't have a sever curvature as the curve extends to form a C shape, I took note of what you mentioned and will ask the surgeon about them, although I had an MRI scan previously but they didn't mention anything apart from the curve.

What are your plans about your curves? are you considering surgery?

Thanks again,
Ahmed

Ahmed, you are more than welcome.
Your curvature isn't as tight as mine but is much more severe than mine. As far as having surgery, since you would also probably need fusion into the cervical spine, the same as me, I will tell you what my doctor said about it. He said that it would likely increase my pain. I am already on daily narcotics for pain, especially in my neck and upper spine. I have lower spine and shoulder pain from different issues. He also told me that it may interfere with my ability to raise my arms, and since I'm thin, the hardware would be visible from the outside and would cause pain to my muscles because the muscles that move the shoulder blades would rub across it. But, then again, since the apex of your curve is so much lower than mine, they may be able to stay out of your cervical spine (neck).

However, now my neck is degenerating and I have a bone spur growing toward my spine at C5 and a bulging disc near the same area. I have sustained a pretty severe shoulder injury that my current doctors (not the scoliosis doctor) feel may have started as a result of my altered anatomy.

The thing is, for us, we tend to "wear out" a little more rapidly than people with normal spines whether we have surgery or not. Pooka1's doctor told her that the type of fusion her twins had gave them the same odds of degeneration that the unfused population had. For the most part, this has not been what I've personally seen with people I know with fusions.

It is such a personal decision to have surgery. To be honest, there were a couple of times that I really wanted to have the surgery and get it over with. Then I waiver back and forth. Right now I'm in the "I don't want surgery" phase. I'm getting help with my upper back pain from trigger point injections. My neck pain and resulting headaches are being helped by getting Botox injections to paralyze some of those very rigid muscles. So, really it's an individual choice. Some people can live with the pain, some find other ways to deal with the pain like I have, and some choose to have surgery.

On the surgical forums there are "sticky thread". One is entitled "I'm happy I had surgery" and the other is something like "I'm sorry I had surgery". If you read those threads you will get an idea of how long recovery is and what some of the outcomes are. You are young, so you have that on your side. Some people are off of all pain meds within a couple of weeks to a few months, while others may take a year or more. Some people are never able to get off of the pain meds. I don't know if there's any way to predict pain outcome. Because your curve is over 50*, statistically your curve is likely to keep progressing. That's just something to consider.

If you live outside the U.S. (I'm assuming you do because you used km instead of miles), I'm not sure what resources are available to you. It depends on where you live. We have people from all over the world that post here, so if you find someone from where you are from they may be able to help you in finding the best surgeon and answer questions about time off of work. Every country has different policies about whether or not you can keep your job for a prolonged recovery period and getting temporary disability benefits. It also varies from employer to employer. If your work is not very physically demanding, perhaps you could go back part time. If your work is physically demanding you may be able to go back to work on light duty doing paperwork or answering phones. I don't know what your situation is. Financial concerns are definitely factors in whether some people can take the time to have surgery. Consider your support network as well, whether you live alone or live with family or have friends that can assist you. It's all so variable. That's why no one but YOU can make this decision. Like Ed said, you have plenty of time to make this decision and get your affairs in order if you do decide to have surgery. There's no rush unless the doctor tells you that your organs are being affected. That usually takes a curve of >100* from what I've read, but your doctor will know best in your case.

rohrer01
06-27-2013, 01:09 PM
I believe these are labeled according to the apex. You have no curve apex anywhere near your lumbar region which looks completely straight to me. If you look at the Lenke curve type chart, the surgeon clearly misspoke. You have a double thoracic, not a double major curve type, no?

No argument here. My surgeon has been pretty inconsistent with me for the last five years. I don't feel comfortable with him anymore. My insurance won't let me see anyone different. So I'm stuck unless I really want to fight with them. I had to fight, fight, fight with them just to continue to see this surgeon! I had him previously when I had different insurance and liked him a lot at the time, but had only actually seen him twice over a period of 10 years. There is NO scoliosis surgeon in my HMO network.

handy
06-27-2013, 01:45 PM
Hi again dears,

I just met the surgeon and here is what I got from him;

1- Curvature is at 60 degrees, exactly as Ed's estimate

2- Also as roher guessed, I need to have a fusion along my cervical spine

3-As a result for the fusion in the cervical spine; It will be much more painful than a full fusion for the thoracic and lumbar together, this pain will decrease as I recover, but it won't be less than now

4- I won't be able to move my head freely, i.e. instead of turning my head only to look at something, I would have to turn my whole body to face it directly

But on the bright side, he told me that I don't have to do it now nor in the near future, as Ed said, I could wait for as long as I wish to have my decision, he took a look into my MRIs and x-rays and found that there is no significant progression of the curve.

He also suggested for me to try intensive PT if I wished , gave me a clinic in the UK to contact them which I am looking for now and will post results here if I tried it.

And finally yes roher I live outside the USA; Saudi Arabia specifically :-)

rohrer01
06-27-2013, 01:58 PM
Ahmed,
I'm not great with my geography, but isn't the UK quite far to go for physical therapy?
I'm so glad that you got your consult with a surgeon. Now with the information that you have (pat ourselves on the back, we were pretty spot on!), you can make an informed decision about when or even whether or not to have surgery. The neck is a tricky place to extend the fusions to. I'm so sorry to hear that your pain isn't expected to get any better with surgery. It sounds a lot like what my doctor told me, although my degree of curve is in the surgical grey area.
How do you feel about this news?

handy
06-27-2013, 06:06 PM
Actually you are right Rohrer, UK is a 7 hours flight unfortunately, but I wouldn't mind trying the available options as suggested by the surgeon to see if anything would work for me.

You and everyone here deserve a shoulder pat for the support I got here.

About my feelings now, I had a relief by Ed's post that he had postponed the surgery for 34 years! and the rest is gone now after the surgeon assured me to take as long as I wish before going for the surgery, in his words "There won't be a day when all scoliosis surgeons suddenly vanish from existence". He asked me about the pain in my neck and shoulder and if I need any pain killers prescription from him, I told him that I don't like meds and that I got accustomed to the pain and we are much more friends now rather than enemies, but I took the prescription just in case.

My plan now is to try to get an unpaid leave from my work to go for the suggested clinic in the UK which will take four weeks for the PT course, and maybe try the Scroth method later in Germany also, so that's an estimate of 12 weeks if I went for both.

titaniumed
06-28-2013, 12:29 AM
Ahmed

You have to realize that you don’t have a standard kind of scoliosis.....its up high, and that makes it tricky. I didn’t want to mention me waiting 34 years and have you thinking that you could get away doing the same thing.....We are all different and surgical timing varies in each case. We can talk about this later....curves, age, and timing. Surgery is “usually” a last ditch effort, in your case, I think this is a correct statement.

There is a high probability that your decision to have surgery will depend on your pain levels....Your Lumbar looks great, but as you go up the spine, your discs seem to get smaller as you go higher, and you can see that you are bone on bone or close to it in your upper thoracic and cervical area, a degenerative process that we sometimes have to deal with living with scoliosis. Your T1 is also inclined around 20 degrees which is the base for the neck......In the future, I can dig up examples of surgeries and their results in this special situation.

You will become an expert at pain. We all become experts as we experience our aches and pains, but what happens as you get older is that you will experience alarming pain “events”. These events can happen with a higher frequency, and has a tendency to tip the scales of decision. These pain events are signals that something is seriously wrong. Muscles can spasm, if you have not had this happen, chances are you will at some point, most likely in the neck. These spasm events are extremely painful, and I have found hot water immersion an easy way to deal with it. Having a non-steroidal anti-inflammatory (NSAID) around would be a good idea right now, ask your surgeon and see what he recommends. I am currently using Diclofenac for my neck as I have 2 herniated cervical discs. This medication works well. It lowers inflammation and reduces pain. NSAID’s don’t affect the mind like OPOID’s do....We can talk about this later.....
http://en.wikipedia.org/wiki/Nonsteroidal_anti-inflammatory_drug

http://en.wikipedia.org/wiki/Diclofenac

I have ALWAYS had an NSAID of some sort through the years available to me. These meds can be life savers.....I also wouldn’t travel without them.

As far as having surgery goes, we plan on it, and prepare for it. We spend many years thinking about it, reading many books and posting on scoliosis forums. Getting all your ducks in a row is a good idea, you have plenty of time to think about it. There are many questions.......

Difficult spine surgeries can take 6-12 hours.....and don’t guarantee any pain relief. Complications can happen which can also make things difficult. Recovery time is dependent on age, health, and procedure....It took me 2 full years at age 49 to recover. Surgeons can fuse you “as-is” with no correction. Playing contact sports after a multi-level cervical fusion is probably not a good idea.

I was diagnosed in 1975 and was a Luque wire candidate.....They used wires on bad cases during that period, and fused to the Pelvis also with this method. 1975 was a while ago, and surgery back in those days was a whole different story, we have come a long way since then. I lived my life knowing that someday I would have surgery. Every single doctor told me this. It was something that I had in the back of my mind, eventual planning for the big day......For now, you can think and plan......and maintain your pain....

I think it would be a good plan to discuss your future physical therapy treatment here before committing to anything right now. I would not buy plane tickets or commit to any programs right now.....this is just my gut feeling.....you’re a newbie, and people will gladly take money up front.

Let us know when you get done with the book.
Ed

susancook
06-28-2013, 02:24 AM
Ahmed, there may be some alternatives like injections or denervations that might help. I found that cold packs helped a lot. I second the use of NSAIDS like Ibuprofen. It is sold in a drug store.

Best of luck to you! Susan

handy
06-28-2013, 05:16 AM
Ahmed

You have to realize that you don’t have a standard kind of scoliosis.....its up high, and that makes it tricky. I didn’t want to mention me waiting 34 years and have you thinking that you could get away doing the same thing.....We are all different and surgical timing varies in each case. We can talk about this later....curves, age, and timing. Surgery is “usually” a last ditch effort, in your case, I think this is a correct statement.

There is a high probability that your decision to have surgery will depend on your pain levels....Your Lumbar looks great, but as you go up the spine, your discs seem to get smaller as you go higher, and you can see that you are bone on bone or close to it in your upper thoracic and cervical area, a degenerative process that we sometimes have to deal with living with scoliosis. Your T1 is also inclined around 20 degrees which is the base for the neck......In the future, I can dig up examples of surgeries and their results in this special situation.

You will become an expert at pain. We all become experts as we experience our aches and pains, but what happens as you get older is that you will experience alarming pain “events”. These events can happen with a higher frequency, and has a tendency to tip the scales of decision. These pain events are signals that something is seriously wrong. Muscles can spasm, if you have not had this happen, chances are you will at some point, most likely in the neck. These spasm events are extremely painful, and I have found hot water immersion an easy way to deal with it. Having a non-steroidal anti-inflammatory (NSAID) around would be a good idea right now, ask your surgeon and see what he recommends. I am currently using Diclofenac for my neck as I have 2 herniated cervical discs. This medication works well. It lowers inflammation and reduces pain. NSAID’s don’t affect the mind like OPOID’s do....We can talk about this later.....
http://en.wikipedia.org/wiki/Nonsteroidal_anti-inflammatory_drug

http://en.wikipedia.org/wiki/Diclofenac

I have ALWAYS had an NSAID of some sort through the years available to me. These meds can be life savers.....I also wouldn’t travel without them.

As far as having surgery goes, we plan on it, and prepare for it. We spend many years thinking about it, reading many books and posting on scoliosis forums. Getting all your ducks in a row is a good idea, you have plenty of time to think about it. There are many questions.......

Difficult spine surgeries can take 6-12 hours.....and don’t guarantee any pain relief. Complications can happen which can also make things difficult. Recovery time is dependent on age, health, and procedure....It took me 2 full years at age 49 to recover. Surgeons can fuse you “as-is” with no correction. Playing contact sports after a multi-level cervical fusion is probably not a good idea.

I was diagnosed in 1975 and was a Luque wire candidate.....They used wires on bad cases during that period, and fused to the Pelvis also with this method. 1975 was a while ago, and surgery back in those days was a whole different story, we have come a long way since then. I lived my life knowing that someday I would have surgery. Every single doctor told me this. It was something that I had in the back of my mind, eventual planning for the big day......For now, you can think and plan......and maintain your pain....

I think it would be a good plan to discuss your future physical therapy treatment here before committing to anything right now. I would not buy plane tickets or commit to any programs right now.....this is just my gut feeling.....you’re a newbie, and people will gladly take money up front.

Let us know when you get done with the book.
Ed

Hi Ed,

That's what the surgeon told me, I don't have the regular type that people have, my scoliosis it to the left and so high, he actually told me I am the first one he has seen with this height of curvature. I didn't mean I'll wait for 34 for years to have my decision but I got relieved knowing that I don't have to be hesitant at my decision.

Again that's what the surgeon said to me "I'm starting to doubt that you're a surgeon in disguise; firstly you estimated my angle correctly and then everything you said matched what the surgeon told me"; he told me that pain will be the highest factor in my decision. I asked him if it is possible if I wanted to remove the instrumentation later, he told me it's possible but I would risk having the deformity to start again, apart from a new very painful healing process until bone material fills the screws holes again.

As for the meds he prescribed Diclofenac and Pregabalin to me, I got them and will keep them for emergencies. Although he said that if I am handling the current pains on my own I won't need them probably, encouraged me to continue what I am doing to relief the pain.

That's why I have signed up here, looking for support and I am really thankful to who ever started this site, and to you all for your time and helpful replies.

What was your angle when you were diagnosed for the first time? I have read in your profile that you had double major curves at 70 degrees, do you have any x-ray for that?

I haven't made my mind yet about the PT so no committing yet, just a plan for the center suggested by the surgeon but will search about them more before making any decision. I don't know if it's prohibited here to share other sites or not, but here is their site http://www.scoliosissos.com/

Surely will do!


Ahmed, there may be some alternatives like injections or denervations that might help. I found that cold packs helped a lot. I second the use of NSAIDS like Ibuprofen. It is sold in a drug store.

Best of luck to you! Susan

Hi Susan, you are at the age of my mother so if you will allow me to call you mom too!!

I use cold and hot packs on daily basis and it helps a lot. I don't like taking meds so I try to avoid them as possible but I got the prescription from the surgeon.

Thanks for your support!

rohrer01
06-28-2013, 02:59 PM
Ahmed,
Meeting you here is really exciting for me. The reason is because of all my years I have NEVER met another "leftie" with curvature into the neck. I have been told the same thing as you by all of my doctors. None have ever seen a curve pattern like mine. While our curves are different, yours encompassing many vertebrae and mine very high and tight, they are similar enough to be able to relate the kind of pain that goes on in the neck.

Ed is right about pain events. I've had pain since I was a little kid. I had my first pain event when I was 16. It's severe, sudden and shocking. My pain management plan unfortunately includes narcotics and muscle relaxants. I also receive Botox in the shoulder and neck regions because my muscles are rock hard there. I get trigger point injections to break up muscle spasms in other areas of my back. I haven't had a pain episode for about three years now. The last couple of episodes were doozies. They sent me straight to the ER. There's no avoiding it when the pain is that severe. So the advice my doctor gave me was to stay ahead of the pain. It has usually worked, although I was on high doses of narcotics when I had my last and worst pain episode.

The point of telling you this is that maybe, just maybe you can avoid some of this. I have lumbar pain due to DDD and something going on in my left SI joint. I've had to crawl at times because it hurt so bad that I couldn't stand. Even this is nothing compared to a pain event. When this happens in the cervical and upper thoracic region, you feel as if you cannot breathe. It's like stabs of a knife with every little breath. I would suggest talking to your doctor about trigger point therapy and/or Botox therapy. Just a warning about Botox in the neck; I've found that I can't lift my head up or look around if I'm on my hands and knees for any reason (cleaning, gardening, etc.). That is the worst drawback. I don't know if you get headaches from the constant neck strain, but I do. The Botox has all but eliminated them. So it has been a real life saver for me.

I hope you figure things out. If you find a therapy that works or end up having surgery, I will want to know every detail!

jrnyc
06-28-2013, 04:46 PM
are you aware of how Diclofenac works...?
it is an NSAID...it is not taken for pain the way aspirin or hydrocodone
is taken...it is more of a long term medication, as i believe NSAIDS are
meant to be...it is not something you would take for immediate pain and
have it work like a regular pain medication would...i do not think it would
help in an "emergency"
i am taking Diclofenac as well....most NSAIDS did not do much for me
in past, so i was surprised it is helping me...
it does make me nervous...i had a huge allergic reaction to another
NSAID....Vioxx...before it was taken off the market...
i also cannot take Celebrex....
so i have my fingers crossed i will not react allergically to Diclofenac...

also...why did they say you will still have a very high level of pain AFTER
surgery....???? did they say why they think surgery would not eventually
give you major pain relief where your curve currently is...????

if you fly to the UK...do you think it would make sense to get
another opinion on surgery while there....not if you need the surgery...
but exactly how they would do it, when they recommend you go ahead
with it, etc...????

best of luck
jess

rohrer01
06-28-2013, 05:08 PM
Jess,
Why Diclofenac and not an OTC medication? Have your reacted to Naproxen Sodium or is Diclofenac more effective? If it works better, I'll be asking my doctor about it.

Thanks.

handy
06-28-2013, 05:45 PM
Ahmed,
Meeting you here is really exciting for me. The reason is because of all my years I have NEVER met another "leftie" with curvature into the neck. I have been told the same thing as you by all of my doctors. None have ever seen a curve pattern like mine. While our curves are different, yours encompassing many vertebrae and mine very high and tight, they are similar enough to be able to relate the kind of pain that goes on in the neck.

Ed is right about pain events. I've had pain since I was a little kid. I had my first pain event when I was 16. It's severe, sudden and shocking. My pain management plan unfortunately includes narcotics and muscle relaxants. I also receive Botox in the shoulder and neck regions because my muscles are rock hard there. I get trigger point injections to break up muscle spasms in other areas of my back. I haven't had a pain episode for about three years now. The last couple of episodes were doozies. They sent me straight to the ER. There's no avoiding it when the pain is that severe. So the advice my doctor gave me was to stay ahead of the pain. It has usually worked, although I was on high doses of narcotics when I had my last and worst pain episode.

The point of telling you this is that maybe, just maybe you can avoid some of this. I have lumbar pain due to DDD and something going on in my left SI joint. I've had to crawl at times because it hurt so bad that I couldn't stand. Even this is nothing compared to a pain event. When this happens in the cervical and upper thoracic region, you feel as if you cannot breathe. It's like stabs of a knife with every little breath. I would suggest talking to your doctor about trigger point therapy and/or Botox therapy. Just a warning about Botox in the neck; I've found that I can't lift my head up or look around if I'm on my hands and knees for any reason (cleaning, gardening, etc.). That is the worst drawback. I don't know if you get headaches from the constant neck strain, but I do. The Botox has all but eliminated them. So it has been a real life saver for me.

I hope you figure things out. If you find a therapy that works or end up having surgery, I will want to know every detail!

Same feelings here Rohrer.

The pains I suffer are more of chronic episodes rather than a sudden sever shock, I had 2 pain episodes in which felt like an electrical shock going from my neck down the left side of my body and ended at my left leg but neither of them lasted more than a minute; had several NCS's and EMGs, no problems at all thankfully.

Have you tried taking a hot shower on daily basis in the morning and sleeping with a hot or at least warm pack under your neck? You wouldn't know how great it is until you try it.

Absolutely I will post everything I try and whether it has worked for me or not, now I am reading the other thread here regarding the torso rotations training, the folks there say it works best for people with the thoracic scoliosis, might try it If I found a gym near me having similar devices.


are you aware of how Diclofenac works...?
it is an NSAID...it is not taken for pain the way aspirin or hydrocodone
is taken...it is more of a long term medication, as i believe NSAIDS are
meant to be...it is not something you would take for immediate pain and
have it work like a regular pain medication would...i do not think it would
help in an "emergency"
i am taking Diclofenac as well....most NSAIDS did not do much for me
in past, so i was surprised it is helping me...
it does make me nervous...i had a huge allergic reaction to another
NSAID....Vioxx...before it was taken off the market...
i also cannot take Celebrex....
so i have my fingers crossed i will not react allergically to Diclofenac...

also...why did they say you will still have a very high level of pain AFTER
surgery....???? did they say why they think surgery would not eventually
give you major pain relief where your curve currently is...????

if you fly to the UK...do you think it would make sense to get
another opinion on surgery while there....not if you need the surgery...
but exactly how they would do it, when they recommend you go ahead
with it, etc...????

best of luck
jess

Hi Jess,

Please pardon my bad english as it's not my first language; I didn't mean to take it the same way I take an aspirin or ibuprofen pill. Living with the pain for several years I got to know when it will get worse, so I would start taking it prior to that.

The pain after the surgery will be caused by several factors, firstly any fusion to the cervical spine will be painful and will have a high impact on the range of motion of the neck. The other factor is that I have a small body build and I am very thin, 168 cm "5.5 ft" tall and weighing 58 kg "128 lbs" only.

I haven't thought about getting another opinions if I went to the UK. Thanks for the great idea!

Susie*Bee
06-28-2013, 06:27 PM
I've been taking Diclofenac (or Voltaren), for several years for my arthritis -- well, ever since they withdrew Vioxx and I tried a few other arthritis medicines that didn't work for me. But yes, it is a medicine that you take daily-- not an "as needed" type of medicine. Ed recently started taking it also. It is one of the older NSAIDs for things like arthritis, and works for some and not for others. All of us need to remember that you need to limit your daily intake of NSAIDs-- I can't remember the amount you're not to exceed, but too much is bad for your liver.

I hope you get some relief, handy. And I started writing this before I saw your most recent post...

rohrer01
06-28-2013, 07:35 PM
Ahmed,
Actually hot baths help me the most since I have back pain from my head to my tailbone at times. It's the heat and the buoyancy that help. The problem is, I don't want to get out. But when the water starts to turn cold I have to bring myself to get out. I also have a heated mattress pad for my bad days, but it's summer here and humid so I don't want too much heat right now. I also have a rice pack that I heat up and put under my neck, which feels wonderful. The problem is that I can't have it all the time. I actually wear a neck brace during the day when my neck is really bad. It's a soft brace that they gave me at the ER one time. You can by them at the drug stores here in the USA. I don't know if you need a prescription for them or not.

By the way, your English is perfect. I only noticed you weren't from here because of the measuring system you used. =)
Metric makes WAY more sense. I don't know why they don't just switch everything over. They use it standard in healthcare, chemistry, biology, and every other science known to man. It's just confusing to have to switch gears when you live in a country that technically uses both systems.

jrnyc
06-28-2013, 11:23 PM
rohr...
i am getting relief from Diclofenac when other NSAIDS did nothing
for me...the Vioxx i had a violent reaction to...it cut off my breathing...
i do not know what other medication you are referring to...
i broke out in hives from Celebrex...
so i cross my fingers that Diclofenac will not cause a reaction...
i never bother with OTC anything...
i have hydrocodone and oxycontin for pain...
if lesser meds worked, i wouldn't need them...
gave up on OTC long ago...

jess

titaniumed
06-28-2013, 11:26 PM
Oh no Ahmed, I’m not a surgeon. Its just been a long time since I was diagnosed (39 years) and always wondered all along what was going to happen.....This is probably our #1 concern. All my questions needed to be answered, and through the years have read many books, looked at many x-rays, and of course have been reading and posting here. Many established seasoned scolis and scoli parents read and post here....there are many people here that know quite a bit, and can act as a collective support group. You did the right thing registering and of course posting here. Its something that all of us older scoliosis patients missed before the days of the internet. I call those days the dark ages of scoliosis.

I have many threads and posts.....and I do have a 1993 x-ray which shows a an approximate 65 degree double curve. I have my double 70 x-ray that my surgeon marked up but never took a picture of it. I was diagnosed at age 15 with twin 50 degree curves that have always been balanced. My plumb line has always been pretty good without too much leaning. I had 20 degrees of progression over 34 years on both curves. The degeneration in my lumbar at age 49 was massive.....I had DDD, and severe vertebral damage, and had to have a procedure called “partial corpectomy” where they grind out your end plates from the front (anterior) In fusion, you want bone to bleed, if it doesn’t, then fusion can be compromised. If you don’t fuse, your rods will break just like a paperclip bending back and forth. It’s the fusion mass that supports me now, not my hardware. Its all Titanium.....Ti-6Al-7Nb is the alloy. Synthes Pangea system.

The link you provided in London is a place than can provide help with your scoliosis. There are many different things we can do and learn as scolis to help with the whole package.....it is a whole package, this thing we have, so it can help in many ways..... One thing that I feel strongly about is knowing about your spine and monitoring through x-rays. X-rays really are the only way to tell what your curves are, and many of these kinds of places that use pictures are misleading because you cant tell what’s happening with your spine with a picture of your back......I can post a picture of my head, but you cannot see I have a tumor....??? I hope this makes sense.

I think that we scolis that have been around the block have paid a price......paid a price for some kind of help, regardless of if our curves improved or not. I don’t think of it as a waste of money since it was a learning curve. Many feel that they have wasted money trying to maintain, and ended up having surgery anyway. In your case, I think that you should wait a while on your surgery, and if you have the money, can go ahead and proceed to London and learn a few things as long as you don’t expect any reduction on your curves, this would probably be fine. I don’t want to see this turn into another “quackery” type of thread, but comments from other members are always welcome. There are many threads on this subject matter here. You can send your x-rays up there, I would love to hear what they say.

On another note, I’m a scuba diver and started diving in 1995 for my scoliosis.....I thought it was a great idea, and made more diving sense than scoliosis sense...... (smiley face) You know that you have some of the best diving in the Red Sea. It rates VERY high for dive destinations......Underwater, its incredible.

Ed

jane d
06-28-2013, 11:54 PM
I was on Voltaren for several years before my surgery 11 months ago and it did help my arthritis but it caused me to develop 5 gastric ulcers! I had no symptoms but my doctor found them after doing an EGD. I had been on Voltaren for about 4 years and was surprised to find out that I had ulcers. I am now on Celebrex and it does not help me nearly as much. I also on Hydroxychloroquine as I also have Psoriatic arthritis and can't take the newer biologic drugs as I have tested positive for TB.
Jane

handy
06-29-2013, 04:45 PM
I've been taking Diclofenac (or Voltaren), for several years for my arthritis -- well, ever since they withdrew Vioxx and I tried a few other arthritis medicines that didn't work for me. But yes, it is a medicine that you take daily-- not an "as needed" type of medicine. Ed recently started taking it also. It is one of the older NSAIDs for things like arthritis, and works for some and not for others. All of us need to remember that you need to limit your daily intake of NSAIDs-- I can't remember the amount you're not to exceed, but too much is bad for your liver.

I hope you get some relief, handy. And I started writing this before I saw your most recent post...

Hi Susie,

Thanks for your comment and sorry I didn't explain that in the first post which resulted in confusion for you and Jess


Ahmed,
Actually hot baths help me the most since I have back pain from my head to my tailbone at times. It's the heat and the buoyancy that help. The problem is, I don't want to get out. But when the water starts to turn cold I have to bring myself to get out. I also have a heated mattress pad for my bad days, but it's summer here and humid so I don't want too much heat right now. I also have a rice pack that I heat up and put under my neck, which feels wonderful. The problem is that I can't have it all the time. I actually wear a neck brace during the day when my neck is really bad. It's a soft brace that they gave me at the ER one time. You can by them at the drug stores here in the USA. I don't know if you need a prescription for them or not.

By the way, your English is perfect. I only noticed you weren't from here because of the measuring system you used. =)
Metric makes WAY more sense. I don't know why they don't just switch everything over. They use it standard in healthcare, chemistry, biology, and every other science known to man. It's just confusing to have to switch gears when you live in a country that technically uses both systems.

Oh tell me about not wanting to get out of a hot bath. I haven't tried a heated mattress before, do you recommend it? Also about the rice pack, is it better than gel packs?

I have the neck brace and I don't think it requires a prescription, bought it from a pharmacy about a year ago.

Thanks for that. I think it would be a bit hard for the society to switch to the metric system after using the imperial for a long period of time. I have American friends living in Saudi Arabia for more than 15 years and they share your wish to switch to the metric system, it's much easier than the imperial.



Oh no Ahmed, I’m not a surgeon. Its just been a long time since I was diagnosed (39 years) and always wondered all along what was going to happen.....This is probably our #1 concern. All my questions needed to be answered, and through the years have read many books, looked at many x-rays, and of course have been reading and posting here. Many established seasoned scolis and scoli parents read and post here....there are many people here that know quite a bit, and can act as a collective support group. You did the right thing registering and of course posting here. Its something that all of us older scoliosis patients missed before the days of the internet. I call those days the dark ages of scoliosis.

I have many threads and posts.....and I do have a 1993 x-ray which shows a an approximate 65 degree double curve. I have my double 70 x-ray that my surgeon marked up but never took a picture of it. I was diagnosed at age 15 with twin 50 degree curves that have always been balanced. My plumb line has always been pretty good without too much leaning. I had 20 degrees of progression over 34 years on both curves. The degeneration in my lumbar at age 49 was massive.....I had DDD, and severe vertebral damage, and had to have a procedure called “partial corpectomy” where they grind out your end plates from the front (anterior) In fusion, you want bone to bleed, if it doesn’t, then fusion can be compromised. If you don’t fuse, your rods will break just like a paperclip bending back and forth. It’s the fusion mass that supports me now, not my hardware. Its all Titanium.....Ti-6Al-7Nb is the alloy. Synthes Pangea system.

The link you provided in London is a place than can provide help with your scoliosis. There are many different things we can do and learn as scolis to help with the whole package.....it is a whole package, this thing we have, so it can help in many ways..... One thing that I feel strongly about is knowing about your spine and monitoring through x-rays. X-rays really are the only way to tell what your curves are, and many of these kinds of places that use pictures are misleading because you cant tell what’s happening with your spine with a picture of your back......I can post a picture of my head, but you cannot see I have a tumor....??? I hope this makes sense.

I think that we scolis that have been around the block have paid a price......paid a price for some kind of help, regardless of if our curves improved or not. I don’t think of it as a waste of money since it was a learning curve. Many feel that they have wasted money trying to maintain, and ended up having surgery anyway. In your case, I think that you should wait a while on your surgery, and if you have the money, can go ahead and proceed to London and learn a few things as long as you don’t expect any reduction on your curves, this would probably be fine. I don’t want to see this turn into another “quackery” type of thread, but comments from other members are always welcome. There are many threads on this subject matter here. You can send your x-rays up there, I would love to hear what they say.

On another note, I’m a scuba diver and started diving in 1995 for my scoliosis.....I thought it was a great idea, and made more diving sense than scoliosis sense...... (smiley face) You know that you have some of the best diving in the Red Sea. It rates VERY high for dive destinations......Underwater, its incredible.

Ed

I know you are not a surgeon Ed, just to compliment your vast knowledge. and you are right thankfully we got the internet now so everything is at the tips of our fingers, and we are lucky to have experienced people like you who don't hesitate to help or answer our questions.

That x-ray looks painful. How does the hardware feel under your skin? What would happen if you fall or trip? Will it break or bend?

I have sent them my x-rays and will post their response below.

Do you still go for scuba diving after the surgery? I would love to try it but God I'm terrified of the sea, don't know why but every time I see a documentary about the seas or oceans I get a shiver of joy and fear at the same time.

The Red Sea is like a heaven for scuba divers and they come from all over the world to dive there. This is an example of what you might encounter

http://www.youtube.com/watch?v=D2oc6HQ3rHQ



I was on Voltaren for several years before my surgery 11 months ago and it did help my arthritis but it caused me to develop 5 gastric ulcers! I had no symptoms but my doctor found them after doing an EGD. I had been on Voltaren for about 4 years and was surprised to find out that I had ulcers. I am now on Celebrex and it does not help me nearly as much. I also on Hydroxychloroquine as I also have Psoriatic arthritis and can't take the newer biologic drugs as I have tested positive for TB.
Jane

Hi Jane,

My mother have rheumatoid arthritis and she takes a whole lot of meds for it "Aciloc, Alendro, Celebrex, Arava, One Alpha, Osteocare and Plaquenil", she found that massaging with hot oils helps a lot for the pain management.

handy
06-29-2013, 05:24 PM
Here is the reply I got from the clinic recommended by the surgeon for PT, they have also included some files which I will attach, I have colored all their replies in Green


Dear Ahmed,

Thank you for your enquiry.

I have attached some information for you to have a look at.

The treatment course we offer is a 4 week intensive exercise programme which is aimed at strengthening the muscles surrounding the spine bringing you in to a more central upright position, decreasing the possibility of progression, reducing pain, improving lung capacity and improving cosmetic appearance.

The course is highly beneficial for patients suffering from scoliosis and you would benefit from enrolling. The course places are limited and we are fully booked now until Mid-August so if you could let me know when you would like to come on a course I will be able to tell you what availability we have a get you booked onto a place.

The total cost of the course is £3900 and the next course starts on Monday 12th August – Friday 6th September. To book this course we require a £500 deposit and ask that you pay this via credit or debit card over the telephone.

This price does not include accommodation, however we do have a list of accommodation in the local area that we can send you.

You can personally expect a dramatic reduction in your pain as we will be able to re-balance your muscles and get them working together again rather than against each other and noticeable improvements in your rotation and cosmetic appearance.

Please get back to me as soon as possible as as I mentioned the places are limited and the earlier we start teaching you these exercises the better result you will be able to achieve.

I look forward to hearing from you.

Kind Regards,

Kylie


So I decided to send them my x-rays with 2 questions;


Hi Kylie,

Thanks for your quick reply and for the attached files.

I have attached my x-rays for the free consultation as I live in Saudi Arabia; I have the following questions:

1- What is the Cobb angle for my curve?
2- Will the curvature be reduced after this treatment, if yes, What will be the estimate of angle after the course?


Thanks,
Ahmed

Their reply;


Dear Ahmed,

It is impossible to say how much any cobb angle will reduce by as it very much depends on the individual patient and how they will respond to the exercises, it also depends on flexibility and compliance. However patients have been able to reduce the size of their cobb angle by up to 20 degrees with this exercise programme.

I will get your cobb angle measured and send this over to you.

With regards to the treatment courses, when are you looking to attend as I would suggest we get your place booked in so that we can ensure you are able to come sooner rather than later.

Kind Regards,

And their measurement of my curve came in a separate email


Dear Ahmed,

The upper thoracic curve has just been measured at 60 degrees. We treat patients with curves up to 90 degrees so we would be able to get some excellent results but we do recommend that you start the programme in October if possible as delaying the treatment could seriously impact on the end result.

Kind Regards,

rohrer01
06-29-2013, 05:38 PM
Oh tell me about not wanting to get out of a hot bath. I haven't tried a heated mattress before, do you recommend it? Also about the rice pack, is it better than gel packs?

I have the neck brace and I don't think it requires a prescription, bought it from a pharmacy about a year ago.

Thanks for that. I think it would be a bit hard for the society to switch to the metric system after using the imperial for a long period of time. I have American friends living in Saudi Arabia for more than 15 years and they share your wish to switch to the metric system, it's much easier than the imperial.

Ahmed,
Yes, the heated mattress pad works well. It's like an electric blanket only it goes on like a mattress cover. DO NOT USE AN ELECTRIC BLANKET in it's place. You WILL get burned if you do this. These are designed to be slept on and don't get as hot. I usually turn mine up before I get into bed and turn it on low once in bed. I have memory foam, too, which absorbs the heat and retains it. I cover that with an egg crate foam as well. I usually end up turning the heat off altogether after awhile. I need a very soft bed as I am thin and small framed, too. My special bed is also adjustable, so I can raise the head and feet which takes pressure off of the neck area. My husband and I have a new very soft, flat, pillow top memory foam bed that I usually sleep on. I sleep in the other bed on really bad days/nights.

The rice pack works better than the gel pack because despite its dry texture, rice retains some moisture. So when you heat it up in the microwave for about a minute or so, you will get a warm, moist heat rather than just heat. The rice seems to reabsorb moisture from the air (or maybe our bodies?). I've had mine for several years. They are easy to make, even if you don't sew. If you want to make an easy rice pack, just put some white rice in a sock and tie it shut. It's a wonderful heat source and will stay warm, at least for me, for as long as I want in on my neck. I'd imagine that you could also put it into the freezer and use it as a cold pack as well. I'm guessing that the area you live in is more like the Arizona desert in the USA (I lived there for many, many years). I don't know how much moisture available in the air will reabsorb into your rice. You have two options. Dump it out and make a new one when it doesn't give moist heat, or place the rice over some source of steam for a little bit. Both are easy options. I've never had to do either one, but live in a humid climate. The rice pack has stayed clean and hasn't picked up any foul odors over the several years that I've had it. You can put it directly on your clean neck. Don't be fooled about it's temperature. If it's warm to the touch, it's warm enough. You can get them too hot and it can burn you. My daughter actually burned the rice in hers and had to throw it out. The moist heat is penetrating. I can't say enough about it. Well I can, because I did! =)

As far as the metric vs. standard (imperial) measurements; It's just harder on individuals in certain professions to switch thinking back and forth. I'm into the sciences and my husband is a mechanic and we both run into that problem. But I guess it's like learning two languages. You get used to it. It would be easier if the world spoke one language, too. But we don't, so we have to accommodate.

jackieg412
06-29-2013, 05:41 PM
Ahmed,
Ed is a great source of info. He also words everything so well. I had never planned on surgery--was told when I first discovered scoliosis--nothing need be done-that I would just have more backaches than average person. And just how many is that, I do not know.

Well ,I did have surgery{3 to be exact}but many years later. Actually 33--almost like Ed.
I say do everything you can,but keep under a watchful eye and use the time to stay healthy and strong. If it comes to surgery you will need both of those to come through this surgery as it is not a WALK IN THE PARK!
Nice to meet you,
Jackie

rohrer01
06-29-2013, 05:58 PM
Ahmed,
I just read your correspondence with the PT place in the UK. It sounds to me like they are pushing quite hard to get you enrolled. This kind of sales pitch makes a person feel rushed. I do not believe them that the timing of this is as crucial as they make it sound. I'd bet they would say the same thing to me and I'm 44 years old! You are still young, if I remember correctly, in your 20's?

Of course it's up to you what you do. That's a LOT of money, especially without accommodations. So it depends upon you whether or not you want to try it. There is a person on here that has helped his daughter's scoliosis dramatically with exercise. However, this girl was diagnosed VERY young and is still growing. You are done growing. As a mature adult, I would go into this with caution, not expecting ANY curve reduction. If you end up getting curve reduction, that would be great. A good PT regiment does help some people with pain. It did for me until my curve reached over 40*. But my curve, unlike yours, is pretty much unreachable because of its location. Your apex is much lower and more of your vertebrae are involved. So I can't give an opinion as to whether or not this will help you. They did measure your curve accurately and consistent with what your doctor measured it at. I just don't like the pressure tactics in the correspondence. It sounds too much like a sales pitch. Is there any way that you can do some research on this facility and talk to some former clients?

Let us know what you decide. Best wishes either way you choose.

handy
06-29-2013, 06:06 PM
Files received from Scoliosis SOS clinic, file size limit prevented me from uploading it here so I tried dropbox, please tell me if it's not working

Body Image Does a four-week intensive scoliosis-specific exercise programme improve body-image in subjects with idiopathic scoliosis (https://www.dropbox.com/s/u9ypgf1l13rjmjt/Body%20Image%20%20Does%20a%20four-week%20intensive%20scoliosis-specific%20exercise%20programme%20improve%20body-image%20in%20subjects%20with%20idiopathic%20scolio sis.pdf)

Cobb Angle The effect of a four-week intensive scoliosis-specific exercise programme on Cobb angle in subjects with idiopathic scoliosis (https://www.dropbox.com/s/85lu6xn7iupp55z/Cobb%20Angle%20%20The%20effect%20of%20a%20four-week%20intensive%20scoliosis-specific%20exercise%20programme%20on%20Cobb%20angl e%20in%20subjects%20with%20idiopathic%20scoliosis% 20%20an%2011%20pati.pdf)

QoL Pain Does a four-week intensive scoliosis-specific exercise programme improve quality of life and decrease patient-reported pain in subjects (https://www.dropbox.com/s/0xordisfpl2mkmj/QoL%20%20Pain%20%20Does%20a%20four-week%20intensive%20scoliosis-specific%20exercise%20programme%20improve%20qualit y%20of%20life%20and%20decrease%20patient-reported%20pain%20in%20subjects%20wi.pdf)

Scoliosis SOS Leaflet - Combined Version (https://www.dropbox.com/s/q1tjaiaukoejpz3/Scoliosis%20SOS%20Leaflet%20-%20Combined%20Version.pdf)

Further Information (https://www.dropbox.com/s/czgwjyxxjmu7grg/Further%20Information.pdf)

How to get to the Scoliosis SOS London Clinic (https://www.dropbox.com/s/xyzedceoxw1j3gl/How%20to%20get%20to%20the%20Scoliosis%20SOS%20Lond on%20Clinic.pdf)

rohrer01
06-29-2013, 06:34 PM
Ahmed,
The downloads worked. I read through them. They claim in one part of the brochure that they have helped over 850 patients. Yet, in their "studies" they hand pick a very limited number of subjects. For instance on the curvature reduction page they only used 11 participants! That's a very red flag to me. In the other examples, the number of participants for a certain outcome NEVER exceeded 100. With over 850 participants they should have much higher sample numbers, like over at least 200 each. Even then, you aren't guaranteed that they weren't hand picked. Sorry I'm so skeptical. I'd say if you have insurance that would pay for this and you want to try it out, go for it. If you have to come up with the cash, it's entirely up to you. Just based on the "scientific" evidence, there isn't enough there to convince me. I'd really suggest looking more deeply into this before you commit. Just my thoughts.

handy
06-29-2013, 07:02 PM
Ahmed,
Yes, the heated mattress pad works well. It's like an electric blanket only it goes on like a mattress cover. DO NOT USE AN ELECTRIC BLANKET in it's place. You WILL get burned if you do this. These are designed to be slept on and don't get as hot. I usually turn mine up before I get into bed and turn it on low once in bed. I have memory foam, too, which absorbs the heat and retains it. I cover that with an egg crate foam as well. I usually end up turning the heat off altogether after awhile. I need a very soft bed as I am thin and small framed, too. My special bed is also adjustable, so I can raise the head and feet which takes pressure off of the neck area. My husband and I have a new very soft, flat, pillow top memory foam bed that I usually sleep on. I sleep in the other bed on really bad days/nights.

The rice pack works better than the gel pack because despite its dry texture, rice retains some moisture. So when you heat it up in the microwave for about a minute or so, you will get a warm, moist heat rather than just heat. The rice seems to reabsorb moisture from the air (or maybe our bodies?). I've had mine for several years. They are easy to make, even if you don't sew. If you want to make an easy rice pack, just put some white rice in a sock and tie it shut. It's a wonderful heat source and will stay warm, at least for me, for as long as I want in on my neck. I'd imagine that you could also put it into the freezer and use it as a cold pack as well. I'm guessing that the area you live in is more like the Arizona desert in the USA (I lived there for many, many years). I don't know how much moisture available in the air will reabsorb into your rice. You have two options. Dump it out and make a new one when it doesn't give moist heat, or place the rice over some source of steam for a little bit. Both are easy options. I've never had to do either one, but live in a humid climate. The rice pack has stayed clean and hasn't picked up any foul odors over the several years that I've had it. You can put it directly on your clean neck. Don't be fooled about it's temperature. If it's warm to the touch, it's warm enough. You can get them too hot and it can burn you. My daughter actually burned the rice in hers and had to throw it out. The moist heat is penetrating. I can't say enough about it. Well I can, because I did! =)

As far as the metric vs. standard (imperial) measurements; It's just harder on individuals in certain professions to switch thinking back and forth. I'm into the sciences and my husband is a mechanic and we both run into that problem. But I guess it's like learning two languages. You get used to it. It would be easier if the world spoke one language, too. But we don't, so we have to accommodate.

That sounds lovely and I should try it, I wonder if there is a common unknown thing we share as we both are thin, small framed and have a similar curvature? Maybe a genetic thing...

I will make a rice pack also to try. About the weather it varies a lot from a place to place, but the most of my time is in very dry climate.


Ahmed,
Ed is a great source of info. He also words everything so well. I had never planned on surgery--was told when I first discovered scoliosis--nothing need be done-that I would just have more backaches than average person. And just how many is that, I do not know.

Well ,I did have surgery{3 to be exact}but many years later. Actually 33--almost like Ed.
I say do everything you can,but keep under a watchful eye and use the time to stay healthy and strong. If it comes to surgery you will need both of those to come through this surgery as it is not a WALK IN THE PARK!
Nice to meet you,
Jackie

Hi Jackie,

Couldn't agree more about Ed, I think he's like the godfather here.

Your words match what the surgeon told me, I actually have a sever D vitamin deficiency, so he asked me to have that treated ASAP.

This is for you and Ed, whenever I need a laugh I just watch it

http://www.youtube.com/watch?v=oo8CrY_ZfFk

Nice to meet you too,



Ahmed,
I just read your correspondence with the PT place in the UK. It sounds to me like they are pushing quite hard to get you enrolled. This kind of sales pitch makes a person feel rushed. I do not believe them that the timing of this is as crucial as they make it sound. I'd bet they would say the same thing to me and I'm 44 years old! You are still young, if I remember correctly, in your 20's?

Of course it's up to you what you do. That's a LOT of money, especially without accommodations. So it depends upon you whether or not you want to try it. There is a person on here that has helped his daughter's scoliosis dramatically with exercise. However, this girl was diagnosed VERY young and is still growing. You are done growing. As a mature adult, I would go into this with caution, not expecting ANY curve reduction. If you end up getting curve reduction, that would be great. A good PT regiment does help some people with pain. It did for me until my curve reached over 40*. But my curve, unlike yours, is pretty much unreachable because of its location. Your apex is much lower and more of your vertebrae are involved. So I can't give an opinion as to whether or not this will help you. They did measure your curve accurately and consistent with what your doctor measured it at. I just don't like the pressure tactics in the correspondence. It sounds too much like a sales pitch. Is there any way that you can do some research on this facility and talk to some former clients?

Let us know what you decide. Best wishes either way you choose.


Ahmed,
The downloads worked. I read through them. They claim in one part of the brochure that they have helped over 850 patients. Yet, in their "studies" they hand pick a very limited number of subjects. For instance on the curvature reduction page they only used 11 participants! That's a very red flag to me. In the other examples, the number of participants for a certain outcome NEVER exceeded 100. With over 850 participants they should have much higher sample numbers, like over at least 200 each. Even then, you aren't guaranteed that they weren't hand picked. Sorry I'm so skeptical. I'd say if you have insurance that would pay for this and you want to try it out, go for it. If you have to come up with the cash, it's entirely up to you. Just based on the "scientific" evidence, there isn't enough there to convince me. I'd really suggest looking more deeply into this before you commit. Just my thoughts.

I had the same thoughts Rohrer, they seem to push this down my throat, which made me feel suspicious to say the least.

I am on my late 20's, just turned 28 last April.

I am doing my researches when I get time to do so. The upcoming Wednesday I have an appointment with the surgeon as he requested me to do some rather exhausting exercises and to check back again a few days later to see if it worked or not.

susancook
06-29-2013, 08:03 PM
Hi Ed,

That's what the surgeon told me, I don't have the regular type that people have, my scoliosis it to the left and so high, he actually told me I am the first one he has seen with this height of curvature. I didn't mean I'll wait for 34 for years to have my decision but I got relieved knowing that I don't have to be hesitant at my decision.

Again that's what the surgeon said to me "I'm starting to doubt that you're a surgeon in disguise; firstly you estimated my angle correctly and then everything you said matched what the surgeon told me"; he told me that pain will be the highest factor in my decision. I asked him if it is possible if I wanted to remove the instrumentation later, he told me it's possible but I would risk having the deformity to start again, apart from a new very painful healing process until bone material fills the screws holes again.

As for the meds he prescribed Diclofenac and Pregabalin to me, I got them and will keep them for emergencies. Although he said that if I am handling the current pains on my own I won't need them probably, encouraged me to continue what I am doing to relief the pain.

That's why I have signed up here, looking for support and I am really thankful to who ever started this site, and to you all for your time and helpful replies.

What was your angle when you were diagnosed for the first time? I have read in your profile that you had double major curves at 70 degrees, do you have any x-ray for that?

I haven't made my mind yet about the PT so no committing yet, just a plan for the center suggested by the surgeon but will search about them more before making any decision. I don't know if it's prohibited here to share other sites or not, but here is their site http://www.scoliosissos.com/

Surely will do!



Hi Susan, you are at the age of my mother so if you will allow me to call you mom too!!

I use cold and hot packs on daily basis and it helps a lot. I don't like taking meds so I try to avoid them as possible but I got the prescription from the surgeon.

Thanks for your support!

Ahmed, please say hi to your mom for me! I am sure that she is worried about you. That's what we do!

Above you said that your surgeon said, "I am the first one that he has seen with this height of curvature." It concerns me that you have a surgeon that does not have experience with your scoliosis. What choices do you have financially to see other surgeons with experience with your degree of scoliosis? Do you have health insurance? When choosing a surgeon, generally it is best to have one that has experience with your problem for many years. That experience is so important as the surgery is somewhat routine to the doctor. Then especially if something goes wrong then the doctor can deal with it better. You do not want to be the patient that your doctor learns on, unless the doctor does the surgery WITH a more experienced doctor.

I believe that you might consider medication for pain if you do not go out to see friends or do activities or cannot sleep because of pain.

Take care and I wish you the best Insha'Allah,
Susan

rohrer01
06-29-2013, 08:08 PM
That sounds lovely and I should try it, I wonder if there is a common unknown thing we share as we both are thin, small framed and have a similar curvature? Maybe a genetic thing...

I will make a rice pack also to try. About the weather it varies a lot from a place to place, but the most of my time is in very dry climate.

Actually, all the people that I know personally that have scoliosis are thin, despite curve pattern. I'm tall and thin, 5'7-1/2" (1.71m) and 122# (55.34kg). Without the scoliosis I was told I would be up to two inches taller. I was 5'8-1/4" at age 15. By age 16 I was the same height I am now. I know that not EVERYONE with scoliosis is very thin, but many are. My grandmother wasn't very thin. She wasn't overweight when she was young, but was not "thin" looking as I am. So I don't know what percentage of us are thinner than average.

I hope the rice pack gives you some relief. It seems at some point ANY relief just feels so good even if the pain isn't totally gone. Even living on narcotics my pain isn't gone. It's tolerable so that I can go on with life. I started needing narcotics off and on when I turned about 30. I had one episode where I was on them continually for about 3 or 4 years. Then I was able to get off of them and use them episodically for 1 to 4 weeks at a time. This time I have been on them now for about 4 years again at varying doses from very high to low. I hate it. At the moment, if my shoulder wasn't hurt, I might be able to get off of them. I need to get it fixed. The ligament is ripped off of the top of my arm bone and my shoulder constantly dislocates, which is very painful.




I had the same thoughts Rohrer, they seem to push this down my throat, which made me feel suspicious to say the least.

I am on my late 20's, just turned 28 last April.

I am doing my researches when I get time to do so. The upcoming Wednesday I have an appointment with the surgeon as he requested me to do some rather exhausting exercises and to check back again a few days later to see if it worked or not.

You are exactly three years older than my son! He turned 25 in April.

Is there any way to get a second opinion? It seems rather odd to me that he would want to send you all the way to the UK for physical therapy. I'm not in any way pushing surgery. It just seems odd. You seem to have time either way you choose unless you have nerve involvement.

How are the exercises going? What does your doctor expect to see over a few days of exercising? That's not enough time to tell anything.

susancook
06-29-2013, 10:06 PM
There are 2 doctors in Saudi Arabia listed in the directory. Are you seeing either of them? One is associated with a university hospital which may be a great choice for an opinion. I did not check his credentials, but there is a list of questions that you can ask your doctor about his skill level.

Susan

titaniumed
06-30-2013, 04:14 AM
That x-ray looks painful. How does the hardware feel under your skin? What would happen if you fall or trip? Will it break or bend?


I don’t feel any of my hardware at all. But some of us do.

I have fallen a few times.....tripped over a large rock and slammed down very hard, and have fallen around 3 times on skis in deep powder.

After fusion is complete, the rods don’t serve much of a purpose. People that have had their rods removed “have”had their curves return or “remodel” after a long period of time.


I think he's like the godfather here.

I don't think Marlon Brando would approve....(smiley face)



Do you still go for scuba diving after the surgery? I would love to try it but God I'm terrified of the sea, don't know why but every time I see a documentary about the seas or oceans I get a shiver of joy and fear at the same time.


Diving is all about relaxation.....and relaxation takes some training. Relaxation is also necessary with scoliosis.

I have been on night dives and have seen octopus just like in that video.....Once during the day time I was waiting for other divers to come over, and just off to the side of me, there was this octopus completely camouflaged into the reef about 2 feet to the right of me. I saw his eye move, that’s what gave him away but the rest of his body blended in perfectly. He did move when he noticed me staring at him....He thought “What is this creature with the big eye (the mask) blowing all these bubbles doing?” LOL Night diving is where its at...once you overcome your fear, you get hooked. I will miss a day dive over a night dive.

I will be diving in Panama next month.


Here is the reply I got from the clinic recommended by the surgeon for PT


I never expected a George Carlin video.....I wonder what he would have said about the “persistance” of “signing up” or getting your “place booked”, in each and every reply returned to you? Is this a train we are trying to catch? No.

I never had any doctor or surgeon do this to me.....funny how “priorities” get established with these friendly reminders right from the get go....Don’t get me wrong, there are medical emergencies, but this isn’t the case.

Ed

SapphireTomoe
06-30-2013, 08:14 AM
I had my corrective op done in 2001, when I was 12, I don't remember exactly what my degrees where for which curve (I had a double curve) but I know both were more than 50 degree curves, I literally had an "S". I wish I could tell you how to help with pain but here I am years later and I still suffer with pain, all I can say is "Hang in there!!!"

I can tell you yours are some where between 30-60, I don't know how to calculate it so sorry, I can only guess. But there are, I think don't quote me on this, sites that can help you figure out how to calculate the degree of the curve.

As far as I know, you may not need surgery, you may be able to use a brace but, a brace is very restrictive and doesn't always work. Especially if you are an adult. To be honest surgery put me in more pain than I was growing up with my sever curvature. It put large restrictions on me and as a child that was devastating. You wont be allowed to exercise or lift over a specified weight (usually like 10 pounds) for 3 months or more depending on how well your healing and how the procedure went. Sorry if its not much help, mine was sooo long ago that I don't really remember it very well. All I know is the drugs were good and I slept A LOT!


But if you are already in a lot of pain to be honest sometimes if you are the pros out weight the cons.

PS It's itchy, very itchy! Like forever! At least mine is and it hurts to itch it.

leahdragonfly
06-30-2013, 10:51 AM
I had the same thoughts Rohrer, they seem to push this down my throat, which made me feel suspicious to say the least.



Hi Ahmed,

I've been following your post and I just have to say if I got that type of high-pressure pitch I would run away screaming from the SOS clinic. Their claims are so ridiculous (that they can reduce your curve at least 20 degrees in 3 weeks) and their expensive, high-pressure sales pitch strips away all credibility.

Best of luck in finding some answers about your scoliosis. I don't think they will be found in the SOS clinic.

Pooka1
06-30-2013, 01:48 PM
Hi Ahmed,

Scoligold is based on Schroth which had a chance to prove it worked and failed. A capable researcher, the grandson of the founder of Schroth, was running the Schroth clinic for about 10 years. Some 30,000 patients were run through the treatment in that time and he and failed to prove the method is effective. He finally left the clinic. There is no evidence even the extreme PT will hold your curves over time and are you willing to do extreme PT the rest of your life? What if you get sick and can't do it? The decreases mentioned in the literature you posted are not necessarily believable if they did not have an orthopedic surgeon measuring them.

There is evidence PT helps with pain but not curve progression. I think you would be wasting your money for anything except pain. If this worked then there would be must less fusion in Germany and in London but that isn't the case. Schroth is still a fringe treatment in Germany and fusion goes on as ever. That is good evidence Scoligold/Schroth is a waste of time and money for the purpose of avoiding surgery. Also, I doubt they have any evidence of helping a high curve like you have. Yet they will take your money I am sure.

Ask them for a money back guarantee.

Good luck.

LindaRacine
06-30-2013, 02:09 PM
Hi Ahmed...

Please note that the "study" they sent you appears not to have been published. Even if it was published, the results would be suspicious until 1) another center can reproduce the results and 2) (as Pooka mentioned), the results can be proved to be permanent. As Pooka mentioned, Schroth has been around a very long time. While they have published some short-term results, they have never published a long-term follow-up.

Unlike Susan, I would discourage you from getting on a pain medication program. While pain medication can be a life saver for severe pain events, my instinct is that taking narcotics on a regular basis drastically reduces one's surgical outcome satisfaction. I don't know if there are any studies on that phenomenon, but I work in a spine clinic where I meet dozens of new patients every week. Mostly, the people who have been taking narcotics regularly on a long-term basis seem to have much longer and harder recoveries than those who don't take narcotics. There are a lot of us who did not take narcotics prior to surgery, and know it's possible to control pain with less drastic measures. However, pain is subjective, so it's hard for anyone to know another persons pain level, and their ability to deal with that pain.

Regards,
Linda

jackieg412
06-30-2013, 05:11 PM
Hi again Ahmed,
The one thing I was told about a brace{and I was willing to try at my ripe OLD age} that the curve I developed in the thorasic was too high up to be helped by a brace. I devoloped this curve after 1st surgery{because I had fractured at the level above}. When they did the high fusion--again no brace--Dr said the only one that would help was a HALO. I am glad he did not do that.
You have a pretty high curve--so would a brace help?

Yes I agree--we should call Ed the Godfather!!

handy
07-05-2013, 07:45 PM
So sorry for the taking this long to reply to you folks, been working 15 hours/day for the past few days

And happy 4th of July for our American friends, although a bit late :)


Actually, all the people that I know personally that have scoliosis are thin, despite curve pattern. I'm tall and thin, 5'7-1/2" (1.71m) and 122# (55.34kg). Without the scoliosis I was told I would be up to two inches taller. I was 5'8-1/4" at age 15. By age 16 I was the same height I am now. I know that not EVERYONE with scoliosis is very thin, but many are. My grandmother wasn't very thin. She wasn't overweight when she was young, but was not "thin" looking as I am. So I don't know what percentage of us are thinner than average.

I hope the rice pack gives you some relief. It seems at some point ANY relief just feels so good even if the pain isn't totally gone. Even living on narcotics my pain isn't gone. It's tolerable so that I can go on with life. I started needing narcotics off and on when I turned about 30. I had one episode where I was on them continually for about 3 or 4 years. Then I was able to get off of them and use them episodically for 1 to 4 weeks at a time. This time I have been on them now for about 4 years again at varying doses from very high to low. I hate it. At the moment, if my shoulder wasn't hurt, I might be able to get off of them. I need to get it fixed. The ligament is ripped off of the top of my arm bone and my shoulder constantly dislocates, which is very painful.





You are exactly three years older than my son! He turned 25 in April.

Is there any way to get a second opinion? It seems rather odd to me that he would want to send you all the way to the UK for physical therapy. I'm not in any way pushing surgery. It just seems odd. You seem to have time either way you choose unless you have nerve involvement.

How are the exercises going? What does your doctor expect to see over a few days of exercising? That's not enough time to tell anything.

Hi Rohrer,

So your scoliosis started when you were 16? There are no relatives of me who suffered from scoliosis, I am the only one in the family

Rice pack is doing a great job, haven't slept this well since a long time!

I will certainly look for a second opinion and maybe a third also.

Had my visit to the surgeon yesterday, he told me that the exercises are just to see if any slight change would happen so we would see if PT will work or not, he says there is a bit of improvement in my posture, this is also confirmed by other people around me.

I asked him about the clinic in UK and why he chose it specifically, he's answer was that he doesn't know any other clinics but knew this from one of his patients who mentioned it, he didn't mean it as a recommendation but saw that I am a bit reluctant about the surgery.




There are 2 doctors in Saudi Arabia listed in the directory. Are you seeing either of them? One is associated with a university hospital which may be a great choice for an opinion. I did not check his credentials, but there is a list of questions that you can ask your doctor about his skill level.

Susan

Hi Susan,

Which directory are you referring to?

Many patients in Saudi Arabia had their surgeries with him, he's excellent at it.


I don’t feel any of my hardware at all. But some of us do.

I have fallen a few times.....tripped over a large rock and slammed down very hard, and have fallen around 3 times on skis in deep powder.

After fusion is complete, the rods don’t serve much of a purpose. People that have had their rods removed “have”had their curves return or “remodel” after a long period of time.


I don't think Marlon Brando would approve....(smiley face)



Diving is all about relaxation.....and relaxation takes some training. Relaxation is also necessary with scoliosis.

I have been on night dives and have seen octopus just like in that video.....Once during the day time I was waiting for other divers to come over, and just off to the side of me, there was this octopus completely camouflaged into the reef about 2 feet to the right of me. I saw his eye move, that’s what gave him away but the rest of his body blended in perfectly. He did move when he noticed me staring at him....He thought “What is this creature with the big eye (the mask) blowing all these bubbles doing?” LOL Night diving is where its at...once you overcome your fear, you get hooked. I will miss a day dive over a night dive.

I will be diving in Panama next month.



I never expected a George Carlin video.....I wonder what he would have said about the “persistance” of “signing up” or getting your “place booked”, in each and every reply returned to you? Is this a train we are trying to catch? No.

I never had any doctor or surgeon do this to me.....funny how “priorities” get established with these friendly reminders right from the get go....Don’t get me wrong, there are medical emergencies, but this isn’t the case.

Ed

Hi Ed,

Do they remove the rods only or all the hardware, i.e. screws?

Stop tempting me to go diving :(

They are really persistent, I will post an email received from them a few days ago.


I had my corrective op done in 2001, when I was 12, I don't remember exactly what my degrees where for which curve (I had a double curve) but I know both were more than 50 degree curves, I literally had an "S". I wish I could tell you how to help with pain but here I am years later and I still suffer with pain, all I can say is "Hang in there!!!"

I can tell you yours are some where between 30-60, I don't know how to calculate it so sorry, I can only guess. But there are, I think don't quote me on this, sites that can help you figure out how to calculate the degree of the curve.

As far as I know, you may not need surgery, you may be able to use a brace but, a brace is very restrictive and doesn't always work. Especially if you are an adult. To be honest surgery put me in more pain than I was growing up with my sever curvature. It put large restrictions on me and as a child that was devastating. You wont be allowed to exercise or lift over a specified weight (usually like 10 pounds) for 3 months or more depending on how well your healing and how the procedure went. Sorry if its not much help, mine was sooo long ago that I don't really remember it very well. All I know is the drugs were good and I slept A LOT!


But if you are already in a lot of pain to be honest sometimes if you are the pros out weight the cons.

PS It's itchy, very itchy! Like forever! At least mine is and it hurts to itch it.

Hi Sapphire,

Sorry to hear that about your surgery outcome. Did you get that checked again?


Hi Ahmed,

I've been following your post and I just have to say if I got that type of high-pressure pitch I would run away screaming from the SOS clinic. Their claims are so ridiculous (that they can reduce your curve at least 20 degrees in 3 weeks) and their expensive, high-pressure sales pitch strips away all credibility.

Best of luck in finding some answers about your scoliosis. I don't think they will be found in the SOS clinic.

I will not go to them without digging much deeper to see their credibility


Hi Ahmed,

Scoligold is based on Schroth which had a chance to prove it worked and failed. A capable researcher, the grandson of the founder of Schroth, was running the Schroth clinic for about 10 years. Some 30,000 patients were run through the treatment in that time and he and failed to prove the method is effective. He finally left the clinic. There is no evidence even the extreme PT will hold your curves over time and are you willing to do extreme PT the rest of your life? What if you get sick and can't do it? The decreases mentioned in the literature you posted are not necessarily believable if they did not have an orthopedic surgeon measuring them.

There is evidence PT helps with pain but not curve progression. I think you would be wasting your money for anything except pain. If this worked then there would be must less fusion in Germany and in London but that isn't the case. Schroth is still a fringe treatment in Germany and fusion goes on as ever. That is good evidence Scoligold/Schroth is a waste of time and money for the purpose of avoiding surgery. Also, I doubt they have any evidence of helping a high curve like you have. Yet they will take your money I am sure.

Ask them for a money back guarantee.

Good luck.

Hi Pooka,

I have contacted Dr. Weiss and will post his reply.

They have said they don't guarantee anything.

handy
07-05-2013, 07:46 PM
Hi Ahmed...

Please note that the "study" they sent you appears not to have been published. Even if it was published, the results would be suspicious until 1) another center can reproduce the results and 2) (as Pooka mentioned), the results can be proved to be permanent. As Pooka mentioned, Schroth has been around a very long time. While they have published some short-term results, they have never published a long-term follow-up.

Unlike Susan, I would discourage you from getting on a pain medication program. While pain medication can be a life saver for severe pain events, my instinct is that taking narcotics on a regular basis drastically reduces one's surgical outcome satisfaction. I don't know if there are any studies on that phenomenon, but I work in a spine clinic where I meet dozens of new patients every week. Mostly, the people who have been taking narcotics regularly on a long-term basis seem to have much longer and harder recoveries than those who don't take narcotics. There are a lot of us who did not take narcotics prior to surgery, and know it's possible to control pain with less drastic measures. However, pain is subjective, so it's hard for anyone to know another persons pain level, and their ability to deal with that pain.

Regards,
Linda

Hi Linda,

I too had doubts about the study. Although I think we can neglect the permanent part of it, we have seen people with fusions who had to do revisions or develop secondary curvatures after the surgery.


Hi again Ahmed,
The one thing I was told about a brace{and I was willing to try at my ripe OLD age} that the curve I developed in the thorasic was too high up to be helped by a brace. I devoloped this curve after 1st surgery{because I had fractured at the level above}. When they did the high fusion--again no brace--Dr said the only one that would help was a HALO. I am glad he did not do that.
You have a pretty high curve--so would a brace help?

Yes I agree--we should call Ed the Godfather!!

Hi Jackie,

I don't know if a brace would help or not, the general idea of a brace I think is that to change the direction of a child's spine during his growth, and to prevent further increase in the curve for adult patients, that's what I think and what I understood, don't know if correct or not

handy
07-05-2013, 07:54 PM
I have received a couple of emails from Scoliosis SOS, I can see a red alert light blinking in front of me now


Dear Ahmed,

I hope you are well.

I just wondered if you are still looking at coming on a course and if so when you would be in a position to pay a deposit.

I look forward to hearing from you.

Kind Regards,


Dear Ahmed,

Are you still looking at coming for treatment with ourselves?

I would appreciate it if you could get back to me as soon as possible.

Kind Regards,

==========

Also, I have contacted Dr.Weiss and this is his reply, I didn't know my angle at that time


Hello,

we have a bracing practice, only, so if you want more intensive physiotherapy you may wish to contact the Asklepios clinic in Bad Sobernheim, however you will have to pay in advance and there will be no refund in case you want to leave earlier....

But with a 50° curve you can certainly live like others and intensive PT will not drastically reduce the hump!


Mit freundlichen Grüßen / With kind regards

LindaRacine
07-05-2013, 09:37 PM
Hi Linda,

I too had doubts about the study. Although I think we can neglect the permanent part of it, we have seen people with fusions who had to do revisions or develop secondary curvatures after the surgery.



Hi Jackie,

I don't know if a brace would help or not, the general idea of a brace I think is that to change the direction of a child's spine during his growth, and to prevent further increase in the curve for adult patients, that's what I think and what I understood, don't know if correct or not

Surgery is definitely not the be all or end all. The difference is that you don't find surgeons saying that it is. :-)

--Linda

titaniumed
07-05-2013, 11:01 PM
Handy

If there is pain after surgery, it can be hard to locate exactly where its coming from so this becomes quite a problem. Removal of hardware can be just one screw or the whole construct. Repeating surgeries and going back in can also create new problems where one does not exist....Removing hardware is something that takes careful thought....Now you can understand that your initial decision to have surgery should be mulled over so you are aware of any potential complications. Think this through, educate yourself, and know your disease.

There are no guarantees with anything, exercise, bracing or surgery. You don’t have to make a decision on anything right now.....you should make the decision to make the best of what you have, live your life, and try to smile often, post here, and maybe take up diving. (smiley face)

We knew that the red alert light would start blinking......(smiley face) When we see that on the roads with an emergency vehicle, the law states stop.

Did you get the book? Right now, I would spend money on reading a few scoliosis books....

Ed

rohrer01
07-05-2013, 11:46 PM
Ahmed,
My curve didn't start when I was 16. I've had back pain since I was about eight years old. I also noticed my upper spine out of place by the age of 12, but my parent didn't listen to me when I complained of pain and the deformity. Since I have hypokyphosis, my posture has always "looked" good. No one noticed the shoulder height difference because they thought it was the way I was standing or sitting. I had quite an extraordinary difference in shoulders that I don't have now because of the development of the second curve making me appear balanced. I think what happened between 15 and 16 was my final growth spurt where, instead of growing up, I curved making me shorter. It was at that age that I had my first SEVERE pain episode. I was at work when it happened and a co-worker actually carried me and put me in her car and drove me home. I didn't have insurance and was afraid to go to the hospital. That happened on a Friday and my mom took me to a chiropractor for an x-ray on the following Monday, where the scoliosis was finally diagnosed. From there I was seen at a free clinic at Children's Hospital until I was 18. I tried to follow up once when I was about 24, but the hospital I went to had terrible x-rays, so don't really know where my curve was. I actually have those x-rays and they are done in segments of about six pieces! Totally useless! I never saw anyone again until 1998 when I had another pain episode. Since then I have monitored with appropriate doctors at least every five years or so. Whew! Condensed version in a nutshell. =)

I'm so very, very glad that the rice pack is helping your neck pain. I don't know how you can work 15 hour days with that kind of pain. But, we do what we must do. You're a real trooper!

I'm surprised about what Dr. Weiss said about physical therapy. I guess that puts a kibosh on things, at least for adults! But, I still think it's a good idea to be in as fit of condition as you are physically able. Keeping the rest of the body healthy can only help matters, especially if you end up having surgery.

Have a good weekend. =)

susancook
07-06-2013, 02:26 AM
Hi Ahmed...

Please note that the "study" they sent you appears not to have been published. Even if it was published, the results would be suspicious until 1) another center can reproduce the results and 2) (as Pooka mentioned), the results can be proved to be permanent. As Pooka mentioned, Schroth has been around a very long time. While they have published some short-term results, they have never published a long-term follow-up.

Unlike Susan, I would discourage you from getting on a pain medication program. While pain medication can be a life saver for severe pain events, my instinct is that taking narcotics on a regular basis drastically reduces one's surgical outcome satisfaction. I don't know if there are any studies on that phenomenon, but I work in a spine clinic where I meet dozens of new patients every week. Mostly, the people who have been taking narcotics regularly on a long-term basis seem to have much longer and harder recoveries than those who don't take narcotics. There are a lot of us who did not take narcotics prior to surgery, and know it's possible to control pain with less drastic measures. However, pain is subjective, so it's hard for anyone to know another persons pain level, and their ability to deal with that pain.

Regards,
Linda
My recommendation about any medication....and I do not remember that you ever said what your doctor gave you, was that if your pain was such that you were staying at home and not participating in activities, then you might consider a medication. I don't know if your doctor gave you narcotics or other meds. Certainly try Ibuprofen first, which is maybe what your doctor gave you in Prescription form. Narcotics can be very addicting. Before using meds other than NSAIDS like Motrin or Ibuprofen, you should consider physical therapy. I do not know if treatments like steroid injections or other procedures are useful for younger people with scoliosis, but for much older people with degenerative changes, it is sometimes useful.
So difficult to type on my phone, so I will stop.
Susan
Just saw your response to my earlier email. There is a Society for Scoliosis Research membership, that has a list of doctor s that have passed certain credentialling criteria so that they have experience and continuing education in spine surgery and care. The link is in the resource area, I believe. Like I said, I am on my cell phone typing, so this is a challenge. S.

handy
08-23-2013, 04:52 AM
Hi my dear friends, How are you doing? I really missed you all

It's been about 2 months since my last post, unfortunately got a nasty car accident which left me out for sometimes and busted both of my legs, gladly nothing major other than the legs and I am back :)

I have asked to have the surgery done with the surgeries that I received on my legs, they did a ton of x-rays and MRIs, but they told me that I would also need to have some adjustments to my ribs because there is a severe deformation which would decrease the respiratory system function by 10% to 15% and because of my asthma it would affect me severely so they refused to do the surgery for now and gave me another appointment after a year from now.

They also did a test for vitamin d level in my blood, which turned out to be severely deficient "4ng/ml while the optimal should be between 50 to 70 ng/ml" and they suggested it might be the reason behind the sudden increase of the curvature.

Currently I feel that the surgery is the right thing to do, just need to use the time until my next appointment to overcome the struggle I have with medications, I have a weird phobia of taking meds.

Off to bed now and will post my new x rays and MRIs later

titaniumed
08-25-2013, 12:09 PM
Handy

Your story is similar to mine since we both broke other bones leading up to our surgeries. I can imagine that breaking “both” legs would stop a scoliosis surgery. I hope you legs heal ok.....

The rib procedure that they might be talking about would be called a thoracotomy.....I wonder how many males have had this done in the past? This would be a rare thing. In England, thoracotomy is called costoplasty. It’s a rib removal procedure.....

Modern hardware systems really do address the rotation of each vertebrae and these thoracotomy procedures are a rare thing these days. I would question this.

It will be hard for me to follow and post since I’m flying to Panama tomorrow and will be diving off an island. They probably don’t have internet, but they do have crocodiles there.

I just might be the first full fusion scoli to have to run from a crocodile. (smiley face)

Ed

jackieg412
08-25-2013, 02:50 PM
Ahmed
I wondered what happened to you.I hope all is healing well. You will need very strong legs for scoli surgery.
Listen to Ed--he knows a lot. Let's hope he knows how to run if necessary.

ED--come back in one piece but your amazing spinal work might make it hard to take a bite out of you!

LindaRacine
08-25-2013, 03:52 PM
Handy

Your story is similar to mine since we both broke other bones leading up to our surgeries. I can imagine that breaking “both” legs would stop a scoliosis surgery. I hope you legs heal ok.....

The rib procedure that they might be talking about would be called a thoracotomy.....I wonder how many males have had this done in the past? This would be a rare thing. In England, thoracotomy is called costoplasty. It’s a rib removal procedure.....

Modern hardware systems really do address the rotation of each vertebrae and these thoracotomy procedures are a rare thing these days. I would question this.

It will be hard for me to follow and post since I’m flying to Panama tomorrow and will be diving off an island. They probably don’t have internet, but they do have crocodiles there.

I just might be the first full fusion scoli to have to run from a crocodile. (smiley face)

Ed
Hi Ed...

Actually, it's a thoracoplasty. Thoracotomy simply refers to an incision of the pleural space.

--Linda

jrnyc
08-25-2013, 09:19 PM
hey Ed
have a great...and safe...vacation....

and just tell the crocodiles that you have so much metal in you, it
would ruin their meal...

jess...and Sparky