My story - SCOLIOSIS - In DESPERATE need of advice :(

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New Member

Date Joined Aug 2011
Total Posts : 2
   Posted 8/3/2011 8:54 AM (GMT -6)   
Hi, i have had scoliosis since i was born , it remained 27-28 degrees for  years, it was caused because of Khiori Malformation I (a malformation in which the brain tonsels are lower than they should be and put pressure on the spinal cord causing the fluid to create Searings in my spinal cord, which then cause the spine to bend twist and curve).
I had the malformation repaired when i was 9(currently 17 M). The curve styed the same until about 10 months ago (end of last summer) I got Very very sick with Fusobacterium and then that turned into Lemierre's disease (an extremely rare disease caused by the fusobacterium that tends to strike healthy teens, it causes blood clots-2 large ons in my jugular vein, ebalisms in the lungs- hundreds,pnemonia,swells the spline, extreme lethargy, spiked fevers, rigors, swollen cervical lymph nodes and a swollen, tender or painful neck and other things, results in death if untreated or too late).
I lost 25 lbs. during my sickness and that caused my spines curve to almost double to 38 thoracic 39 lumbar. Im fine now , gained the weight, healthy, no signs i was ever sick with it. But I do have horrible back pain from the worsened curves (i also experience "side pains" they feel like almost a spasm in a specific area of my lower back on the right side a little past the kidney, same place every time, had them since i was 8, NOTHING helps them so i just deal).
Ive seen 12 orthopedic surgeons and asked for some srt of treatment and something to help with the pain, all say "take tylenol and heat pad and all we can do is watch your back and surgery if neessarry when youre done growing", except for the most recent! :D he put me in a Boston Brace, which has definitely been helping, myself, my gf and my family can see the difference in my shoulderblade now, receded back down (: but nothing for the pain ):
ive also gone to 14 PM doctors, I went through ALL of the NSAIDS, and when i told them that Percocet worked for it , they all just thought i was a "drug seeker", i know they work because after i got better from my disease i was sent home with percocets for the rest of the left over pain, i took my dose when my back was acting up really bad and it was the GEATEST relief i had EVER gotten from anything for my back!
 Since no doctor would take me seriously, i did anything i could to find someone who would, so when i went back to all the different specialists for a post sickness checkup i told them about my back stroy and if there was anyting they could do and the one person who did was my hemotologist. go figure! anyways, im no on 45mg of roxicodone a night for pain, it may seem like a high dose but i have an extraordinarily high tolerance to these kinds of drugs (NO im  not a drug addict or an abuser! i use the meds Strictly for what their intended for!)
I wake up with Bad pain EVERY morning and i dont want to have to take my pain meds early in the day or in the day at all because i get tired and i have to be able to drive. ANyone have any suggestions for what i can do during the day or what to change to help reduce pain? I.E - im getting a new temperpedic by recommendation of my doctor to help reduce some the of pain i wakeup with. Please ANY suggestion would be VEry much appreciated
(Edited for easier reading) Thanks! SE wink

Post Edited By Moderator (Screaming Eagle) : 8/3/2011 9:16:16 AM (GMT-6)

Forum Moderator

Date Joined Feb 2003
Total Posts : 15850
   Posted 8/3/2011 12:22 PM (GMT -6)   
Hi Matt and welcome to Healing Well's chronic pain forum. Your story sounds very familiar to those like you that are very young and have chronic pain. Drs will not prescribe pain medication! However, pain has no age limit.

Wow, you have been through a lot to be so young, but this is typical of scoliosis in young people. Unfortunately, I really do not know what would help you out during the day time simply because, pain medication is not a one size fits all type of thing. We all metabolize medicine differently, so it is very hard to say what you could take during the day time hours. It really is all trial and error. I know some people buy the pain patches that are available OT and use those, not sure if they would help you. Other than trying some Ibuprophen or something along those lines and alternating back & forth might be of some help.

Anyway, I wanted to pop on here and tell you welcome aboard.
Moderator Chronic Pain Forum

Veteran Member

Date Joined Oct 2010
Total Posts : 924
   Posted 8/3/2011 1:16 PM (GMT -6)   

I'm sorry to hear about your scoliosis. That too is my main medical issue. I'm in my 40's and my curve was stable until my later 30's. It is now progressing, though still around 25 degrees (upper thoracic and cervical).

With a curve in the upper 30's, x-rays should provide clear evidence that you have legitimate CP needs. I'm surprised that you've not found a PM to treat you. One further strategy is to see a scoliosis specialist in your area (try a search on Maybe he also treats CP, if not, he may have a PM he usually refers patients to. A referral from him may also help with credibility.

Also, you'll probably need a time-release medication -- asking for Percocet may have thus raised some concern. If you can afford it, or you have fair insurance, maybe start with Ultram ER (there's also now a generic at 100mg and 200mg). I started at 200mg and now take 300mg. It has never made me drowsy. Instead, it seems to help my mood and concentration (it is prescribed off-label for depression).

It is a schedule 4 drug so PCP's will often be willing to prescribe it.

If that doesn't work, then oxycontin, MS contin, etc. would be the likely next steps.

You might also try some physical therapy. There's something called the schroth method some PT's use for scoliosis patients. Again, a local scoliosis specialist may be able to point you to the right PT center.

An inversion table may also be of some benefit. You can get one on ebay for about $150.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

Post Edited (cogito) : 8/3/2011 1:42:00 PM (GMT-6)

New Member

Date Joined Aug 2011
Total Posts : 2
   Posted 8/3/2011 1:16 PM (GMT -6)   
thanks , yeah I have tried patches several times, feels like the yalmost dont get deep enough? It solves my muscle aches, but not the bone pain.
I also take ibuprofen regularly

Regular Member

Date Joined Feb 2008
Total Posts : 254
   Posted 8/4/2011 1:52 AM (GMT -6)   
Welcome to the board,
Before I became disabled I worked in the medical field @ one of University of Miami's satellite hospitals for about 15 yrs and one of our specialties was treating teens with scoliosis surgically (average age was 13)Patients came from all over the country for the surgery that was offered and did not require a pt to wait until he was grown to have surgery. We did treat many adults as well. I don't know if this allowed but I tried to PM you and you don't have anyway of reaching you privately. This is the Doctor: Dr.Harry Shufflebarger director of Orthopedics @Miami Childrens Hospital...hope this helps.RB

Post Edited (NO-RELIEF) : 8/10/2011 8:34:26 AM (GMT-6)

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