scoliosis

Hello, I have been posting on the GERD side of the forum up until now. I have scoliosis (curvature of the spine) and my level of pain has been rapidly increasing. Throughout my experiences with scoliosis, I have tried using a back brace - I tried this for months and it only made my back feel worse - my back muscles were way too tight for it to do any good (I also have mild CP which affects the way my muscles work throughout my body). I also tried physical therapy 3 or 4 years back - that persisted for months but gave no long lasting results...

I scrolled through the Chronic Pain postings but I didn't come across anything for scoliosis. I just got out of surgery for a nissen revision and I'm currently having complications with it, so I don't want to take any drastic measures - spinal surgery or anything of the sorts - until my nissen issues are under control. But for any of you who have chronic pain, what would you recommend I do? Most painkillers don't work on me because I had a lot of complications at birth and needed intense medications - I was hospitalized for a year and ended up building an immunity to most medications. To give a general example, after and before my nissen surgery, I had intense stomach pain and the ONLY medication that gave me the slightest bit of relief was dilaudid. Considering that, I'm not sure what to do about my back pain because my back pain is extremely severe compared to the pain I was experiencing then. Are there any medications out there that any of you could suggest that might give me some sort of relief? Note: I'm working on getting an appointment with a pain management specialist.

Thank-you!

Thank-you for the introduction. And I hope you are right. Finding a doctor that will see me is proving to be difficult because of my insurance, but hopefully I will find someone in the near future.

Hello and welcome to CP forum Wasteofpaint. I am so sorry to hear of your medical situation and yes CP can be a nightmare.

I see you have an appt with PM dr and I want to let you know there are two kinds out there. One does injections and procedures only-not medications. The other will do the same but he will prescribe pain medication too. Be sure you have one that does give medication. You can ask their office if the dr prescribes medication in additional to his other services and not sound like a drug seeker. Alot of time we are viewed this way by people that have no clue.

Pain medications vary per individual. What may work for me may not work for you. I have a wacky system that does not tolerate medications well at all, therefore its a challenge any time a dr wants to rx meds to me because of this. I am not limited to just pain medication either. I ended up with an intrathecal pain pump because we ran out of options with oral medications. I can tell you now that I have a new PM dr on board, life is so much better. She is very knowledgable in pumps & medications and this is a must with a pump.

I do have scoliosis of the lumbar spine that shows up on xrays. I have no idea how much of a degree the curvature is and I assume not bad, otherwise that would have been commented on. I knew of a 16 yr old born with severe scoliosis and once she was past her growing years she became a candidate for the harrington rods to be placed in her spine to straighten her spine out. But she was a severe case and that was her only option. The pain she suffered before surgery was something else. No one wants to give a young child pain meds. All I know is before a person is a surgical candidate there is certain criteria to be met. She was so excited after surgery because of the improvement and she felt like most kids her age for once. 

I do hope you have a full recovery from your recent surgery and all goes well. We look forward to having you here on the CP forum. 

 

Hello and welcome,

I too have scoliosis, but it isnt the cause of my back pain, it may contribute, but it isnt the main reason I have back problems. I too found that most pain meds where not working for me, I could take enough meds to kill a herd of elephants, but yet I was still in pain. After many years of searching, I found something finally that helps, and it has been a Godsend. But if you have the right PM doctor, then they will work with you, and if they dont, then dont give up. I have to drive a long distance to find the right doctor for me, and I live in a city with very many doctors and a fancy hospital, but yet they could not help me. Their are many meds out there, and combinations that may help, but also their are so many trials being done right now on new pain meds, so dont give up. I know after 7 years trying to find treatment for my back pain and migraines was a very long hard road I hope I never have to go down again. Sometimes it's just find ing the right doctor and the right combination of meds, just remember that narcotics are not always the answer to pain, but it will help when mixed with other treatments and meds. And remember what works for one doesnt work for others, like diladid doesnt do anything for my pain, ibprofen works better for me then diladid, but yet Suboxone works wonders when lots of people say it doesnt do anything for them, our bodies just work so diffrent from others.

-hellokitty

Thank-you guys for posting! I will read more thoroughly through your guys's posts tomorrow and respond individually. I did notice something that stood out - there are 2 types of specialists? I didn't know that whatsoever, so thank-you for mentioning it. about my user name - yeah, I guess I'm an artist...? I like to paint & draw and I'm learning how to play the guitar / keyboard but they are all things I just like to do. I wouldn't necessarily call myself an artist. I'm also 18 & I like to listen to Bright Eyes and its a title of one of their songs...

I will post more tomorow. Thanks again. Note: I'm considering getting injections in my hip because its really bothering me, but first I still need to find a specialist. & When I said CP I meant cerebral palsy, not chronic pain haha. My mistake for not spelling it out and getting people confused.

Post Edited (wasteofpaint) : 7/21/2009 9:20:48 PM (GMT-6)

Hi, wanted to add this, if you are seeing an orthopedic dr many times they can do an injection in the hip. Just an FYI lol.

AHH I did not get around to posting individual responses, but thank-you all so much for the information. I did take the time to read through everything more thoroughly and I am going to spend today doing some research on some of the topics that were mentioned.

Skeye, thank-you for the advice! I have had a gait analysis done, but it was 3 of 4 years ago and it wasn't a comprehensive analysis. When I had the test done, it was through my primary care physician. I went in for an appointment regarding my back pain, and there happened to be an orthopedic doctor in the office at the time of my appointment and he offered to test me. Last time I knew, there is a 1 - 1 1/2 inch difference between my leg lengths, which is due to the misalignment in my hips. CP itself doesn't worsen over time, but the symptoms related to it very well could have. It is possible that the muscles in my back have tightened since the analysis, which would make the prior data inaccurate. I'm not sure.

I live in Maine, so I've been going to Southern Maine Medical Center. Right now I don't have an orthopedic surgeon, nor do I have any type of doctor that is specialized in CP or scoliosis. I'm not sure where to start looking to be honest. I located the pain management doctors at SMMC - there were only 3 doctors. I gave them a call. 2 of the 3 that I talked to wouldn't see me because they aren't taking new patients, and the other one recommended that I get in in contact with a CP specialist - he didn't want to treat my scoliosis when the scoliosis as you said may only be an additional factor to something more extensive.

I've been making phone calls and haven't been having much luck. Right now my primary care physician is a pediatric doctor - with all of my medical issues I haven't had the time to get a new doctor. I tried making a few phone calls before my nissen surgery awhile back, but the doctors I called either wouldn't take my insurance or weren't taking on any new patients. I have mainecare for insurance, and I'm also on disability through the state, so all of my health care is covered, but only if I stay in the state of Maine.

Boston Childen's Hospital is the highest ranked hospital in the New England area, but I could only go with a referral from the state, and it is under particular conditions. I looked into getting my nissenn surgery done in Boston, but trying to get a written referral or a doctor to even verbally recommend I go there was next to impossible. There are a few hospitals in the New England area, but I'd feel most comfortable going to Boston Children's over any other location. When I was going through my medical issues as an infant, the doctors who worked at Boston Children's saved my life. I've heard great things about that hospital. If I had a choice, Boston Children's would be my #1. I did some research awhile back and found out that they take patients up to 21 years of age, and that mainecare does work with them in some cases, but right now it is kind of impractical. I am going to try to spend a majority of today researching children's hospitals closer in the area.

Skeye, I actually have another question - Why do you recommend I go to a children's hospital in particular over a general hospital?

To everyone else, any advice about any of this? Particularly with me finding the right doctor and me possibly going out-of-state? Considering I'm still learning what steps I should be taking in regards to doctors / specialists / getting appointments / treatments, any and all information is welcomed. Thank-you all for your thoughts!

I agree with you 100%. I'm pretty educated about our healthcare system on a political stanpoint and I've got to say I'm not impressed by any means. But that's another story in itself. I just looked up some information about the Shriner's Hospital, there is one located in Boston and they take patients up to 18 years of age. Thanks so much for the suggestion, I'm definitely going to look into it a bit further! I also did reseach about the Boston Children's Hospital - there are 10 doctors at the Children's Hospital in Boston that deal with both scoliosis and cerebral palsy, so I'm really hoping I can get an appointment somehow. Does anyone know how I can go about getting a referral? Right now I'm just trying to find a good orthopedic doctor, but even that is proving to be difficult. If I were to go to Maine Medical Center or Southern Maine Medical Center (both of which are hospitals) do you think they could find me a doctor to go to? I've been finding people online in my area and have been making phone calls but I still haven't had much luck.

I'm assuming the waiting list for shriner's is very long. I turn 19 in september, so I need to still look into somehow getting a referral. ANY and ALL information / personal experiences are welcomed! I need some good advice here. Thank-you everyone!

My PCP is a pediatric doctor though. I think what I need to do is get a new PCP that takes patients over 18 & then get a referral from them. I'll keep everyone posted.

My doctor/surgeon that did my nissen knows enough about me as a patient that he's referring me to Boston's Children Hospital!!!! I am so happy about this. Now all I need to worry about is getting it approved through my insurance. This is such good news though! =].

Wasteofpaint,
That is great news! Dani always makes a reponse look better, though, but she captured my feeling exactly!

PaLady

Hi wasteofpaint,

Sorry that this response is a little late -- I've been away. That's great news that you got a referral to the Boston Children's Hospital! I recommended a children's hospital, because the orthopedic surgeons there are specially trained in pediatric orthopedics. These docs deal with both CP and scoliosis (whether related or not) very frequently, so they are the authorities in the field. Because CP is a developmental disorder of motion & posture, leading to musculoskeletal dysfunction, orthopedists are the ideal doctors to treat CP, as they can deal with the unique muscular & resulting skeletal & functional problems. They are the most up to date on the latest treatments for spasticity, rigidity, bracing, casting, and surgical options. If needed, they can also refer you to other doctors or services familiar with CP, who may very well be located at that same hospital.

At the hospital where I work, almost all of the orthopedic surgeons are CP specialist as well. In fact, each one holds their own version of a CP clinic each week, which is a day devoted solely to seeing patients with CP (although they see them normal days as well). It's pretty neat actually. They get the guys from occupational therapy, physical therapy, and orthotics involved in each case & there are often multiple representatives from these services in the room to help the doctor assess the patient on all levels & plan for further care. At my hospital, patients will only be seen if they are 21 & under UNLESS they are an already established patient with a particular physician. Then the physician often gives them the option of continuing to be treated by the service.

I hope your appointment goes well & you learn of some new options!

Skeye

Post Edited (skeye) : 8/2/2009 7:27:16 PM (GMT-6)