I don't know what I should do

[Ballerina]

I just turned 18 in September and I was told that I can no longer see my doctor at the Children's Hospital of Eastern Ontario. I have had such bad luck with doctors I now feel like I can no longer trust what they say.

I have a 28-27 degree curve (depending on who is looking at the x-rays), I have had a bone scan, a CAT scan, a MRI and over 5 x-rays in the past year. All tests have come up negative for anything other than the curvature.

I am in constant pain that I cannot seem to relieve but I do not want to take pain medication (I am worried I will become addicted and dependent on them).

Now that I am 18, I feel hopeless to try and solve this pain issue. All the doctors that I have seen have simply told me:
(a) Scoliosis does not cause pain
(b) It's all in my head and I need to stop trying to get attention
(c) I will just need to deal with it
I had asked if there was anything that I could do to stop the pain that I am having, try something other then just waiting and dealing with it, with little enthusiasm from the doctors. They tell me that I cannot afford a brace (how would they know?), braces are too expensive to just "try" and see if they will work, or they say that I don't need it. Where do they get off saying this!

Sometimes I just wish that I could switch places with these so called doctors. I always thought that doctors wanted to help patients get better. I feel like I can no longer trust any doctor. Now, I don't even want to see another doctor for my scoliosis. My boyfriend is very supportive of me, and feels so bad when I lay in bed and cry because I am exhausted and haven't had a good night sleep for over a year.

I just don't know what to do anymore. Should I be looking on the internet for a good doctor to go see or should I just let this go and deal with this by myself?

Thanks to everyone who has listened to me whine through all of my posts. You've all helped me so much,

Justine

[LindaRacine]

Hi Justine...

If the tests haven't turned anything up, I'd have to wonder if the issue is one of a soft tissue injury. If you can find a good physical therapist, it might be worth a shot.

Good luck.

Regards,
Linda

[Nawlinsgal]

An answer for you

Justine,

I know exactly how you feel! I've been through the same ordeal for the last 8 years, and I feel like I've found something that will actually work and that makes sense! I have tried physical therapy 8 or 9 times and it only provided temporary relief like everything else I tried. This year I was recommended by 2 different people to this Dr. in Sugar Land, Texas who does SpineCor bracing. I was able to get in touch with 3 people who had done the treatment and had success that were past adolescence. I decided to go for it, and I'm so glad I did. I've just had the brace for less than 2 months, and I definitely feel better. It is a major life adjustment and not easy, but for me, it's way better than getting surgery or living on pain meds. I would love to share all about it with you if you want to hear more. You can email me at scolihope@gmail.com.

Lauren

[jillw]

Lauren, just curious, what is considered "success" for adult bracing? (I have no experience with adults in spinecor, but my daughter wears it). I think I read that spinecor in adults is used to relieve pain, but that it doesn't give a permanent correction (i.e. after the brace is done being worn). Is that what your understanding is also? If so, would wearing it a year or two be enough for permanent pain relief - or would you expect to periodically need to wear it again for a year or so as the pain returns? (even so it could be worth it if it provides relief) In any case, Good luck to you!

[SIsForSarah]

Hi Justine,

I was also treated at CHEO, but due to the degree of my curve, it was right in for surgery for me, no time to brace (my curve was at 47 degrees when it was finally X-rayed). Now that you're 18, you may want to look for another back specialist in Ottawa (if you've been to CHEO, I'm assuming you're from the area). I recently had a great appointment (for a herniated disc below my fusion) with Dr. Wai at the Civic Hospital. He answered all my questions and was very thorough. You may want to look into getting a referral to him (though his waiting list is very long - it took me 6 months to get an appointment).

Another thing you may want to look into, as I know it sometimes occurs with scoliosis which can stress out the nervous system, is fibromyalgia. I believe doctors who specialize in the auto-immune system know the most about it, but from what I've heard from colleagues who have it, it can often be treated with herbal remedies (so you'd avoid the heavier medications you're worried about).

There has to be some answer to your pain, and I wouldn't give up until I found it if I were you. Good luck!

- Sarah

[Nawlinsgal]

Correction in adults

Jillw,

Nobody has made any claims that SpineCor will correct my curvature. My only objective is to relieve my pain, which so far, is working. There are other adults I've spoken to who have seen significant reduction in their curves...like 15 degrees, that has remained corrected after being out of the treatment. My doctor has told me that during the 1 to 2 years in the brace and in treatment, the goal is to work on the neurology of the condition, where he and many other doctors believe scoliosis stems from. He can explain it much better, but I'll give it a shot. Right now my brain sees crooked as straight or normal, and he wants to change that normal to be truly straight (or as straight as possible.) There are occular/vestibular exercises that I do everyday to "retrain" my brain. He says that after treatment is done, my spine should remain stable and so should the pain. There are other symptoms found to be consistent with most scoliosis patients (i.e. digestive problems) that they also address during treatment. It sounded crazy to me at first, but after thinking about it, there is a lot that makes sense about it. I'm new at all of this, and certainly, we'll see how I'm doing after I'm finished, but for the moment, I am very optimistic.

[Andrea]

Schroth Physiotherapy

Hi, Have you tried Schroth Physiotherapy? Call the Ottawa & District Physiotherapy Clinic

[jillw]

Nawlinsgirl,

So for adults the goal is pain management (and if some lucky folks get a correction that would be the icing on the cake)?. I'm glad to hear you are already noticing an improvement as far as pain is concerned (and I hope you ultimately also see a reduction in curve!)

[Jimbo]

Are you working for spinecor nawlinsgirl, just weird that your email is scolihope@gmail.com,

Ballerina, sometimes you just have to keep seeing specialists until you get an answer, just make sure it is an adult scoliosis specialist. I believe you have pain. Just make alot of noise!

[WNCmom]

Just wondering--Shriner's hospitals will see children through age 21, and you are 18 (which may be the upper end for getting into the system). I believe there is at least one hospital in Canada? Would it be worth a try to get in there? Maria would likely know. Perhaps they could help.

Mary Ellen

[trcylynn]

Ballerina-

I have gone through the same thing- have you had an MRI done? They say my pain is due to a herniated/degenerated disc instead of the scoliosis.

I have gone through numerous Dr.'s and numerous PT's and I feel as though I have finally found the right PT and the right hospital with Dr.'s that actually want to solve the problem instead of just saying well too bad it shouldn't be painful so figure it out.

I know its a long road but keep searching- I'm blessed right now with my job and benefits so I can get every MRI ordered and see any Dr. I want without needing a referral.

Keep searching until you find a Dr. that you believe. While all scoli Dr.'s have told me the same thing I never really believed them. Now I'm seeing someone to see if I have some sort of other problem that could have inadvertantly caused the scoli.

Like my Mom always told me- you have to be your own health advocate and our bodies/senses tell us when people are full of crap. If you see a PT and after the first visit have a bad "vibe" or feeling about them leave and demand to be referred to someone else. I finally found a Dr. that was willing to refer me to somewhere other than the hospital affiliated PT.

Good Luck and if you need to "whine" again or need any other help let us know- that's what this board is for!!

[bscoli]

keep searching for a best fit for you

Like you, the girl in this article is a dancer.
http://www.wauwatosanow.com/story/index.aspx?id=765591

Options exist - keep asking, keep looking, keep trying