PDA

View Full Version : new to the forum- thoracic curve and pain



chickatey
04-26-2010, 06:54 PM
Hi all,

Forgive the cross post- I also posted to non-surgical, but as I am on the line towards surgical and would like advice on surgery, I am posting here too. My name is Katey and this is my first post, though I've been reading for awhile. I am a 24 y.o. female with a 50 degree thoracic curve. The worst of it is between T3-T6. I have not had surgery and have not yet had a doctor want to do surgery, though I am leaning (haha- literally) in that direction.

Recently, I have been experiencing a lot of pain. Not-so-coincidentally, in my mind at least, the pain corresponds exactly with where the curve is, to the left and mostly on the ribs. I get muscle spasms and tightening in the area and it's awful. I have high pain tolerance but it truly hits a 9 and is an average of at least a 6 day to day. I have seen my primary care doctor, a neurologist and most recently an orthopedic surgeon for advice and hopefully pain care, only to leave empty handed and frustrated to tears. I have received prescriptions for Flexeril and Baclofen, which help a bit, but I can only take those at bed time. I work full time and it's hard to do so in agony!

The orthopedic surgeon just wants to watch and wait, and the neurologist has me doing PT. The PT tech has me doing exercises to strengthen the muscles, which helps a bit, but even he agrees that he's beyond his depth. Basically, I feel like I'm stuck in "scoliosis purgatory" with this 50degree curve. Any tips from people in this community for how to get real pain relief and how I should proceed would be greatly appreciated! I am so tired of being in this pain, and being told that it's not scoliosis related. And thanks for reading all this, I know it's long.

rohrer01
04-26-2010, 07:17 PM
Hi all,


The orthopedic surgeon just wants to watch and wait, and the neurologist has me doing PT. The PT tech has me doing exercises to strengthen the muscles, which helps a bit, but even he agrees that he's beyond his depth. Basically, I feel like I'm stuck in "scoliosis purgatory" with this 50degree curve. Any tips from people in this community for how to get real pain relief and how I should proceed would be greatly appreciated! I am so tired of being in this pain, and being told that it's not scoliosis related. And thanks for reading all this, I know it's long.

Chickatey,
Read my post "BAD NEWS". You are definitely NOT alone. I have seen people with curves smaller than mine get surgery, so I don't understand why we keep hearing that our pain isn't scoliosis related. My doctor wouldn't even listen to me today. I left home crying. I don't know where to get help either. :(

Vali
04-26-2010, 07:18 PM
Hi chickatey, Welcome to the forum. I'm no Dr and don't pretend to be, but, maybe you could ask either practitioner if you can have nerve root blocks or facet joint injections. I had these done in my lumbar area (facets worked best for me) and they did give me some relief, but then this dwindled some over time. Don'tnow if they can do these in the thoracic area, maybe someone on here knows better than i do and will chime in. I also did gentle pilates up until about a month or two before surgery. Hope this helps.:)

debbei
04-26-2010, 07:31 PM
Hi Chickatey,

Welcome & love your user name :)

Is your ortho Dr. a scoliosis specialist or a general ortho? Avoid the general ortho, as they don't have the experience you need. Check http://www.srs.org/find/ for a specialist in your area. I thought that most surgeons will consider surgery for a 50 degree curve, especially if it's accompanied by pain.

Where are you located?

jrnyc
04-26-2010, 07:58 PM
Hi Katey
welcome to the forum....wonderful people and great stories and experiences shared here....

i agree with those who've posted already...scoli specialist is a must...check out the list of scoli surgeons...

also, what deb said about injections...i get botox injections in thoracic area every 3-4 months from my pain doctor, whom i've been seeing for about 4 years, as i delay and procrastinate about surgery :rolleyes: but april 12th when i saw my surgeon in NYC, he offered to do (mostly) minimal invasive for me...lumbar surgery L1-sacrum...and i expect to go ahead within the next 12 months....

i would definitely recommend the scoli surgeon but also a pain management doctor! unfortunately, i havent found much that helps my lumbar pain, even with epidurals, facet blocks, nerve ablation, and sacroiliac injections...the last ones helped the most...but all have been very temporary...some just a few weeks of relief...of course, i am grateful for any help i can get!! the botox in upper back is the best for muscle spasms...it freezes the muscles so they cant tense up....wish it worked on lumbar, but it doesnt...at least, not in my case....

i get angry when i hear any stories about doctors not trying to help patients...or worse, minimizing or denying their pain...i dealt with that with Lyme disease back in the 1980's, when there was so much ignorance about the illness (still is ignorance,in alot of places)...i no longer put up with doctors who dont at least try to help...

i would recommend finding a couple of helpful doctors and seeing what they have to recommend.....as long as your insurance covers it, you have nothing to lose with consulting with them!


best of luck
jess

lray
04-26-2010, 08:11 PM
Hi chickatey (I also love your name!),

I am amazed by the posts I'm reading where the physicians are saying that the pain isn't from the scoliosis. Wha?? Of course it is. I get the same type of pain you're describing in my thoracic spine, about the same area where you are having it. The pain is REAL and it is from the scoliosis.

Please try to find a scoliosis specialist in your area. Good luck to you.

chickatey
04-26-2010, 08:53 PM
Hi all,

Thanks for your nice and helpful responses.

It is so frustrating to hear doctors say that scoliosis and pain aren't linked...it seems like such a no brainer! My curve is centered over T3-T6, and my physical therapist says that the areas I respond to with the most pain are...centered over T3 to T6.

I actually saw a scoliosis specialist who's supposed to be quite good, Dr. Rawlins in New York City (where I live). He performed surgery on my boyfriend, who had a 75 degree curve. He seemed like a nice enough guy, but was completely dismissive of my pain complaints and just wanted me to "exercise." Hard to do when sleeping and getting up in the morning can be a challenge!

I will look at other scoliosis specialists and look into pain docs too. I have a good neurologist who treats me for migraines...he's going to do an MRI on my back to see if there's any pinched nerves, etc.

I am definitely interested in any injections or treatments that might be helpful. For those of you that get them, have you been seeing orthopedic doctors, pain management doctors or a different kind of specialist for that?

Thanks so much again for the warm welcome!

jrnyc
04-26-2010, 09:03 PM
Hi Katey
i will send you some doctor names by way of private message...
you happen to live in one of the best cities for doctors....all doctors, including scoli specialists! of course, being a native New Yorker, i think it is the best city in the world...but that's just me :)

jess

Doodles
04-26-2010, 09:19 PM
Chickatey--
Welcome to the forum. It looks like you've gotten lots of good advice. One other thing I meant to post on here last week is about using a TENS unit. You put electrodes around painful spot and have a rather small remote that allows you to increase the electrical pulses or decrease. It can't accidentally go up real high so no tasering allowed! Actually, the local ortho surgeon I see suggested it. My p.t. guy showed me how to use it and I've used it a few times and it has helped a lot with muscle soreness, tightness, and some painful spots. I really like it and with RX from doctor there isn't much cost to "rent" it. You take it home. My pain is not like before surgery so I'm not sure it would help you. But I haven't ever seen this on the forum before. Wonder if anyone else used it and/or found it helpful. My p.t. was surprised we hadn't done it before. Good luck with a pain solution. Janet

foofer
04-26-2010, 09:43 PM
Welcome Chickatey,

It's great that you live in NYC as you will surely be able to find the help you need- between all the great docs and posting on the forum.

I have not had the severe pain that others have reported, but discomfort over the days and years is wearing as well. Can't imagine how frustrating it must be to try to tell a doc you are in pain and getting no validation. Really makes me mad. Wish some of them WOULD read the Forum!

Anyway, a big welcome to you!

Vali
04-27-2010, 02:58 AM
Previous to my surgery, my Neurosurgeon would order them for me. They have to be done under a CT scan. Most surgeons require you to have an updated MRI. If they do work for you in terms of pain relief, it is utter bliss!

Back-out
04-27-2010, 05:09 AM
I too welcome you, Chickatey,

I agree with what you've been told especially about the many advantages of your location. In addition to consulting surgeons, I wonder if you've thought of consulting a physiatrist. That's an orthopedic MD who specializes in pain relief and non-surgical approaches. There are several good ones in NYC (especially at the HSS) who have special expertise in spines.

Either individual scoliosis surgeons' offices will recommend them or else the physician referral service at HSS will recommend them according to your insurance

They will NOT blow away your pain! Furthermore, if by chance you are not going to a specially knowledgeable PT it's possible that your current exercise program is making things worse - or at least, not providing maximal relief.

I just can't get over these surgeons who don't take take scoliosis pain seriously.

Much luck!

chickatey
04-27-2010, 07:27 PM
Hi again all,

Thanks again for the welcomes and advice.

I appreciate the suggestions people sent me for physicians! Unfortunately it looks like my insurance doesn't cover Dr. Lonner or Dr. Neuwirth, but I'll look into it more as I can get some out of network coverage. Has anyone seen Dr. Errico at NYU? I saw Dr. Rawlins, who works with Dr. Boachie at HSS. He's a scoliosis specialist and very experienced, but his lack of interest and concern for my pain bothered me.

The TENS unit sounds interesting. I'd heard about it vaguely before. I will ask about that.

I should be getting an MRI in the next couple of weeks, as my neurologist ordered one. We'll see if that shows anything. I am definitely interested in the idea of seeing a physiatrist. My boyfriend, who had spinal fusion for scoliosis in 2008, is seeing one for some pain issues currently and has had good results. He's at school out of state, but I did find one here at Weill Cornell who looks very good and works with scoliosis patients. Do you think I need a referral, or could I call directly? I feel like my scoliosis dr wouldn't even give me a referral, but my primary care might.

My PT person is actually really great. He really understands the pain I am experiencing and feels that it's definitely scoliosis related. Right now he's mostly just doing massage and having me do some gentle exercises to strengthen my (admittedly weak) muscles. I do think it helps, but I feel like I need more than just PT!