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wasteofpaint
Regular Member


Date Joined May 2009
Total Posts : 21
   Posted 7/20/2009 8:40 AM (GMT -7)   
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!

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/20/2009 8:51 AM (GMT -7)   
I would like to welcome you to HW forums. We are here to lend support and hopefully some good advice.

Other members will be along throughtout the day to add their 2 cents to it.

When you get to your PM appointment if he or she is a good doctor they will find the right mix of meds that should work for you. There are other members who have a tolerance to pain meds or they just don't seem towork for them. So be patient and they will show up.

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


wasteofpaint
Regular Member


Date Joined May 2009
Total Posts : 21
   Posted 7/20/2009 9:30 AM (GMT -7)   
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.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/20/2009 10:27 AM (GMT -7)   
Hi,
I also want to welcome you to the Chronic Pain forum. You're on the right track with the pain management specialist, as others have said. You also may want to use the search box to try to find more on scoliosis. I think more people have it but may not title their posts that way. I see it mentioned here but it's often in conjunction with other things.

BTW I recently started posting to the GERD forum because just last month I was diagnosed with Barrett's, which is all new to me as I've not has GI issues until very recently - or so I thought!

Again, welcome!

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 7/20/2009 12:04 PM (GMT -7)   
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. 
 
 
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/20/2009 12:30 PM (GMT -7)   

 

   Dear WasteofPaint,

     Good afternoon. My name is Dani. It is very nice to meet you. I am glad you came over to the chronic pain forum we are much cooler than the other rooms (Kidding) :-)

     I have Levoscoliosis. It began almost 4 yrs ago. I did not have scoliosis as a child. I do not show positive for arthritis (thou lord knows they re test that one like its going out of style). But I have many arthritic areas. My spine was already skeletally mature when my curve began.. So its... going for the "title"... so to speak. My left hip is being crushed and my knees have a hard time now. Im a bit shorter now....  . Also, in last few months had the pleasure of my teeth crumbling off. Lots of areas of "crumbling" "degeneration". All bone type stuff. So.. I guess I'm trying to say I don't have any experience with AIS or other forms..... But! I have ALOT of pain management techniques that I use.

     So.. Just gonna high light breifly. I hope helps, maybe not.

Exercise (modified exercises for "core" yoga & "leg" pilates)~ Ask PT they can help modify a workout programm for you. Try to snagg a foam block or buy one at any sporting goods store.

Arnica Gel ~ Local grocers store

"wet heat" heaing pad ~ kinda costly but sometimes on sale online.

TeNs Unit  (Mr.T!) ~Transcutaneous electrical nerve stimulation. Ask your pain management specialist about them.

Bio Feedback ~ Biofeedback, or applied psychophysiological feedback. Your Primary care OR Pain management doctor can help you find a good pain psychologist.

Nonsteroidal anti-inflammatory agents (NSAIDs)~ I take a cool one called relofen. But will help ease the areas around the "stinging" sensation if you have rotation on the verticle axis. Pain management will know a good one.

Antidepressants and anticonvulsants~used to treat neuropathic (“nerve”) pain. Maybe primary care? But im positive pain management would know best type to use.

Injections~direct delivery of steroids or anesthetic to nerve, joint or epidural space. Injections into the facet, peripheral nerve, “trigger point” and other locations are also known as “blocks”. These may provide relief of pain (often temporary) and can be used to confirm diagnosis. Epidural injections provide temporary relief for severe back pain. Your Pain Management sepcialist will talk in detail with you, if this is an option.

     And that all I know about as far as Scoliosis & Pain. Just my experience.  Also, literally nothing works on the stinging but the injections for me. I can help keep the muslces around the damaged areas from being quite as inflamed... But the core "stinging" sensation is at the mercy of my injections series. :-)   

Hope to get to know you better.

*huggs*

dani


TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 7/20/2009 2:59 PM (GMT -7)   
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

Chronic Pain Moderator

-Stress is when you wake up screaming....and realize you haven't fallen asleep yet.

-What if the Hokey Pokey really IS what it's all about.

-Is it time for your medication or mine?

-Underneath it all....I'm pretty much naked.


Stevemartin
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/21/2009 5:06 AM (GMT -7)   
Complications like Scoliosis, Levoscoliosis cannot be completely cured but it can be treated with help of some expert postural exercises advised by the physiotherapist.

wasteofpaint
Regular Member


Date Joined May 2009
Total Posts : 21
   Posted 7/21/2009 8:17 PM (GMT -7)   
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)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/21/2009 9:56 PM (GMT -7)   
Wasteofpaint,
Yep, using CP here will automatically be read as chronic pain!

It is so complicated finding a PM doc. If you want both injections and medications you'll need to ask ahead of time. And there's plenty of experience here with various injedtions!

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 7/21/2009 11:43 PM (GMT -7)   
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.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/22/2009 12:08 PM (GMT -7)   
Hi wasteofpaint,

Welcome to HW! This is a wonderful place for support.
You know, I actually read your mention of CP as cerebral palsy, but that is because my brain has been trained to read it as such. Is your orthopedic surgeon a pediatric orthopedic surgeon? They are usually more familar with CP (yes, I mean cerebral palsy) than general, spine, or sports orthopedic surgeon -- certainly at your age, anyway. I actually work with a pediatric orthopedic surgeon at my state's local children's hospital on CP research. She, as well as several of her colleagues are CP specialists; this is the reason why I am somewhat familiar with CP (at least from a professional standpoint). Because of your CP, I'd think that more things could be contributing to your back pain than just scoliosis. Have you ever had a gait analysis done? Gait analysis is a tool commonly used to assess children with spastic CP. It mainly describes the alignment & function of the lower extremities, but it can also reveal problems with the trunk & pelvis, & any number of these things could be contributing to your back pain. I'd definitely speak with your orthopedist about your continuing pain, & if you are not seeing an orthopedist that is a CP specialist, I'd seek one out. I don't know where you live, but your local children's hospital would be a good place to start looking. Good luck!

Skeye

wasteofpaint
Regular Member


Date Joined May 2009
Total Posts : 21
   Posted 7/24/2009 11:52 AM (GMT -7)   
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!

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/24/2009 12:08 PM (GMT -7)   
Hi, Wasteofpaint,
I don't know much about all of this, but wondered if you had a Shriner's hospital in Boston. I know you're 18, so I don't know what their cutoff age is. I guess it's just on my mind because our local one has been fighting to stay open and they just won that vote at the Shriner's convention, but I think they're now going to start billing insurances. However, I know they never turn anyone away.

Still, Boston has so many great hospitals - and it isn't worth two cents without insurance they'll accept, right? I'm without insurance right now, and will get some kind of low cost stuff until I can either be eligible for Medicaid. I'm way older than you, though, so in a couple of years I'd be eligible for Medicare whether or not I get disability. This whole health care thing is scarey and wrong (can't get political here so I'll stop) IMHO.

I hope you find some treatment that allows you to get at least relief!

Hugs,

PaLady

wasteofpaint
Regular Member


Date Joined May 2009
Total Posts : 21
   Posted 7/24/2009 4:03 PM (GMT -7)   
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!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 7/24/2009 7:09 PM (GMT -7)   
Get your PCP to make the referral for you. Pretty standard all specialist want refer. Good luck.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


wasteofpaint
Regular Member


Date Joined May 2009
Total Posts : 21
   Posted 7/25/2009 6:03 PM (GMT -7)   
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.

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/26/2009 9:10 AM (GMT -7)   
 
     Dear Waste of Paint,
 
     Good morning. It is good to see you again. I hope you are having a stress free day. I for one am exercising my lazy bones!
 
     So, you currect doctor probably will continue to see you til you are 21. When I went in search of my very first doctors turns out I needed to see childrens doctors and dentists until I was about to turn 22. Not sure if that is the case with you.... But you current docotr can refer you to a specialist .. and I think it wise for your current doctor to do this because he can send along history, tests, and breif description about the patient (you). Okay, my random thought it done!
*huggs!*
  dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


wasteofpaint
Regular Member


Date Joined May 2009
Total Posts : 21
   Posted 7/27/2009 1:42 PM (GMT -7)   
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! =].

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/27/2009 1:46 PM (GMT -7)   
 
YESSSS!
*High Five*
yeah  
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/27/2009 3:53 PM (GMT -7)   
Wasteofpaint,
That is great news! Dani always makes a reponse look better, though, but she captured my feeling exactly!

PaLady

wasteofpaint
Regular Member


Date Joined May 2009
Total Posts : 21
   Posted 7/27/2009 7:51 PM (GMT -7)   
Haha, thank-you guys. I'll continue to keep you posted.

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 8/2/2009 6:18 PM (GMT -7)   
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)

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