I'm new here -- HELP!

[KScribe]

I am a 43 year old male who was diagnosed with scoliosis when I was 12 or 13 and had to wear a Milwaukee Brace for about 4-5 years.

I never really had problems as a teen as far as pain was concerned, but now that I am an adult I am dealing with all sorts of back problems due degenerative disc disease and several injuries (one at work and TWO car accidents -- lucky me!)

I've already had a laminectomy and discectomy at L5-S1, but that disc is now re-herniated again after the surgery I had about 3 years ago.

I'm in chronic daily pain and on a LOT of meds daily (6 Norcos a day - one every 3 hours; four skelaxins a day for muscle spasm - they don't seem to do a thing; two timed release pain meds, every 12 hours -- Opana ER; antidepressant (Cymbalta) and anti-anxiety med (Xanax); Fiorinal for the horrible headaches as needed -- more and more lately.

I have just found two surgeons who specialize in Adult Scoliosis from the NSF - they are both in Miami working out of Jackson Memorial Hospital. I plan to consult with them shortly about all of this.

I have four herniated discs presently -- two in the cervical spine from a car accident, and two in the lumbar spine from a fall I took at work. I can't help but to think that the scoliosis is playing a large role in all the pain I'm suffering, although none of the orthopedic doctors I've seen so far has made much mention of the scoliosis as being a factor in any of this (odd, huh?)

I'm just so happy to have finally found a message board that deals specifically with scoliosis and all the issues related to it. I'm pretty overwhelmed at the moment and depressed due to the pain and the side effects of all this medicine. I just had to leave work on disability because it was getting to the point that the pain and the meds were affecting my ability to think and to do my job satisfactorily (MY opinion, not my bosses')

I teach high school English, and I would come home from work every day in excrutiating pain only to curl up in a fetal position and sleep all afternoon, wake up, eat some dinner, and then go back to bed. I couldn't get any work done at home (grading, lesson plans, etc..) Weekends were the time I would use to try to get all my papers graded and lessons planned, but it was becoming SO overwhelming to me that I finally knew I had to take time off from work to deal with this issue before I had a nervous breakdown or something.

I can't help but to feel like a failure at the moment. Maybe this is a male issue. I want to be "Superman" and kept telling myself that I COULD handle this pain and work at the same time -- that I just had to tough it out and make it through each day one day at a time. Finally, after finding a wonderful pain management doctor who actually took the time to talk with me for over an hour (never had a doctor that caring before, EVER) and breaking down in his office in tears because I couldn't handle this anymore, did I make the decision that I needed to stop working and concentrate on my health FIRST.

Money is an issue now, of course. I see a therapist for my depression issues and my feelings of being a "failure" and he is helping me to work through all of that and to see that I am a human and can only do so much.

I don't know what I'm asking here -- I guess just someone who understands what I am going through and can validate my choice to leave work for the time being. I deal with people who cannot understand what my life is like - who look at me and say "well you LOOK ok" and have absolutely no understanding of pain medications and judge me for taking so many pills to just FUNCTION day to day. I keep getting the lectures from friends and family about becoming addicted to pain medicine and that also weighs on my mind and just makes me feel more like a "weak" person who cannot deal with his pain and just move on.

I'm praying that the specialists in scoliosis can help me -- I'm scared of more surgery since my last one was so difficult to recuperate from and it wasn't successful in relieving my pain. I just don't really know where to turn anymore.

Thank you allowing me to vent here -- I hope that someone out there understands and can offer me some support or consolation. Please tell me that there is a way out of this nightmare and that I am not going to spend the rest of my life in PAIN and MISERY.

Kevin
Milwaukee brace (1979-1983)
Laminectomy/discectomy (2002) L5-S1
Herniated discs: L4-L5, L5-S1; C5-C6; C6-C7
CHRONIC pain; headaches; depression; anxiety; DDD; bursitis/tendonitis;
spinal stenosis

[Geish]

hi Kevin,
I'm glad you found us. There is so much information and support to be found on this site. We all know that chronic pain sucks. It seems to be a major motivator for surgery here.
I have a question...have your Drs ever said what your degree of curvature is? Have your curves started progressing? My curves really took off at about age 42. If they are progressing they can cause increasing pain.
I have no regrets about surgery even though it has only been 3 months. My surgeon went in and fixed my 2 herniated discs when he did the fusion. What a joy to wake up and not have that nagging burning down my thigh. I hope the new Drs have good news for you. I just wanted to say hi and welcome to the board!
Alicia

[skoshi314]

You've come to the right place!

Welcome Kevin!
I can completely relate to the joy/relief of finding this board. Since I've been here (since mid-January) I've learned more about scoliosis and spinal issues that I ever dreamed. And the best part is I've found a community that understands and accepts. What a gift!

I never had any luck with Skelaxin either. Flexeril seems to work better for me. I have some DDD in my cervical area and get migrain-type headaches from that. When I feel one beginning, if I'm where I can take a Flexeril and go to sleep for several hours, it usually heads it off at the pass (possibly an Okie term). But working full time doesn't make that real easy. I also understand the depression. I've been on Wellbutrin for about 6 years and originally began taking after my father passed away, but I think it has been instrumental in dulling the depression experienced from chronic back pain. Be proud you are taking a proactive role in improving your quality of life and don't worry about what others think. Hmmm, maybe I should take my own advice!

I have not gotten to the point of having to take a leave from work, not necessarily because physically I don't need to but because I'm the insurance carrier for my family. So, it's a necessity I stay, not necessarily a choice. Fortunately, I have a boss who is very understanding and supportive of correcting my scolio so needing a day off here and there isn't a problem.

I don't think the 'Superman' issue is either male or female, I think it has more to do with personality. Right now I'm trying to not feel like a failure for not being able to cook dinner for my family much anymore and for letting my house cleaning go to a point that a year ago I would have been mortified about. It's a daily struggle but I'm learning that it's OK to let KFC or Pizza Hut cook dinner too. Cut yourself some slack, dude!

Let me just paraphrase everything I've just said-we're glad you're here and I promise there's someone here that has experienced, felt or gone through just about everything!

[MaryF]

Hi Kevin,

Welcome to the forum. I can relate to a lot of what your feeling. We have a few things in common. I wore a boston brace with the milwaulkee hardware for several years. I was compliant and when I stopped wearing it I had about a 50 degree thoracic and 35 degree lumbar curves. Surgery was scheduled for Oct. 1983. I went in to give blood(post-op stuff) and my parents and I met with the surgeon and he started to waver on going through with the surgery, that is all it took for me to hop off the exam table, get dressed, and I left my parents sitting there with the doctor. Life went on for the next 24 years. I never had a backache in my life and scoliosis was no longer a word in my vocabulary. I was an elementary teacher for 16 years. The last 6 spent teaching reading and language arts to 5th graders. Which I loved! On Feb. 6th 2006 I woke up with pain in my neck. I was in week 22 of training for the Austin marathon. Wow, did my life do a 180. The pain increased and day after day never let up. I got introduced to MRI's, myelograms, vicodin, shots of demerol, shots of tortal(sp), flexeril, valium, skelexin and had my first ever panic attack and depression. I lost 20 lbs. from pain and worry, and I really did not need to loose weight. I was in that same cycle of just trying to make it from day to day. I ended up in physical therapy for 8 weeks and this helped immensely. I have 2 bulging and C6-7 herniated. I can only imagine what 4 herniations feels like!! During 2006 I noticed my right shoulder blade sticking out more(it always has). I could really tell in how my clotheswere fitting. My hips have shifted and I have lost my waist. The journey from doctor to doctor was frustrating. In 2007 I finally had xrays taken for the first time in since 1984 and yes my curves are worse. Going to a doctor who specializes in adult scoliosis, led to a pain doctor who saw scoliosis patients regularly.

WOW, I am rambling---This whole experience forced me to ask for help for the first time. I am not teaching now, I miss the kids and teachers that were on my team. It has been so humbling to have others do for me. I also felt weak and people(family) who have not experienced chronic pain cannot relate. Know that you are not weak, but very strong in the face of an overwhelming time in your life.

I know now I need surgery. I have seen 2 adult scoliosis doctors and have another appt. March 17th. I have some decisions to make.

You will get through this!! I hope you can get into those adult scoliosis specialists and find some answers you need. Finding the right doctor is so important.

Good luck and welcome to the forum.

Mary

This forum is awesome! It is a wealth of information and you will find so much support from peole who undertand what you are going through. It is making my journey a bit easier.

[Susie*Bee]

Kevin-- just want you to know that I understand also-- my pain hadn't gotten that bad, but the day at school was so grueling and my back hurt so badly when I'd get home. And then I'd fix dinner with little breaks to go sit down or lie down, because it just ached too much to stand. We all want to just tough it out and keep going, and it's sooooo difficult when you have to finally throw the towel in and feel like you gave up. You've got to realize that you didn't. You're not a weak person, but someone who realized the changes that were happening required a different strategy. You're switching into a different battle mode because the other one didn't work. You're taking charge of your life in a different way.

I had my surgery last May and am trying to get my endurance and strength up enough to head back to school in August, a year after what I expected to do... The surgery did weaken me, but it's workable. I'm getting better and better all the time. I am so glad that I chose to go ahead with it.

I'll be praying that you get connected with a scoli specialist who will know what to do to bring you relief and mend your "broken" back. Hang in there!

Mary-- I am feeling for you too. You have a great amount of strength of character. Keep us posted with your surgery plans.

[KScribe]

I just wanted to thank you all for taking the time to read my LOOOONG post and for responding -- you all have made me feel so much better about myself (honestly). Was feeling very down this morning (could you tell? ha ha ha) and reading your replies has restored my confidence that I AM doing the right thing by taking the time off from work and focusing on getting myself better.

THe funny thing is, I really don't know what my curves are at present. The last time I remember having them actually measured was when I was a few years out from wearing the brace (in college, I guess?) I know that I still have the curves because all of my MRI's always say "moderate blah blah curve" in the thoracic spine and lumbar spine and so forth.

I did hear from Dr. Lebwohl's office today -- they told me they need to "review" my case and then the doctor will make a decision as to whether or not he will accept me as a new patient -- I'm keeping my fingers crossed here.
He works out of University of Miami through Jackson/Memorial Hospital and specializes in Adult Scoliosis (there don't seem to be many doctors out there who specialize in this area, I must say!)

Anyway -- thank you all again so much for replying to my post. It is greatly appreciated and I hope to be checking into this board and learning as much as I can over the next several weeks while I'm out of work.

Thanks, Kevin

[Shari]

Hi Kevin,

There are more Doctor's than you think that are very interested in helping those of us with adult scoliosis. I'm sure Linda R. can provide you with a list.

I found my surgeon via this forum, not by recommendation, but by information on how to research for one.

I really don't think that whether we are male or female matters, we all still go through the same experiences!!! I hope you know that there are many people here that are willing to help you get through every part of this journey!!!

Don't be afraid to ask questions, share concerns or let your guard down, because we've all been there!!!

Shari

[loves to skate]

loves to skate

Hi Kevin,
I just found this Forum a couple of weeks ago. I am 3 1/2 months post-op and so thankful I decided to go for the surgery. I'm so sorry you are in so much pain that you have to take all that pain medicine. I wasn't on any pain medication before my surgery other than tylenol PM to get some sleep at night and Voltaren for the arthritis pain. I would have taken some pain meds, but my primary care doctor wouldn't write a prescription for me. He hasn't a clue about bad backs. When he finally did an xray of my spine, all he told me was that I had DDD. No mention of the severe scoliosis. I was sent to a neurosurgeon who told me he wouldn't operate on me unless I was in a wheelchair. I am convinced a scoliosis specialist is the only way to go. I think the SRS is an excellent source to find a specialist. You are right, there are not many Doctors specializing in Adult Scoliosis out there. In the meantime, have you tried water therapy or swimming? I don't think it will fix your back, but it might help with some of the pain plus it can help to keep you physically fit until you have surgery and physical activity will help with anxiety and depression. I could barely walk so the water therapy was the only physical activity I could do and I believe it has helped me to recover faster that I expected was possible for a 68 year old female. I stopped taking my oxycodone about 2 1/2 months post-op, but am taking gabapentin for residual pain in my legs and for restless leg syndrome at bedtime to get some sleep. Hang in there and get as many people praying for you as you possible can. I'll be first. Prayer really helps.
Sally
Sally