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Scoliosis, Dr or nurse
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christinam4 posted:
I have Scoliosis since I was a kid, now I am 31. I was just Dx with spine fractures, Arthritis in the neck, shoulders, back, hips. I have had a bone scan, MRI and x-rays. I do have a question re: DDD. How do you dx DDD? Would it have been already dx? I have had severe back pain since having my 2nd child 7 years ago. I can no longer work and have not worked since 04. I am not on disability. My next step is talking to my Dr about applying and him Dx me permamently disabled. I also have Fibromyalgia Dx in Dec 09, IC Dx Jan, 2010 IBS Dx 7years ago. I have severe cramping that feel like I am having contractions, like I am having a baby. They have put me in the hospital. My white blood count is always high, and no one knows where the infection is. Immune problems have been ruled out several times. My Potassium is always low, I have been given it several times when I am in the hospital. Which has only been twice in the last 1 year. I had a hysterectomy in Sept. 09 due to severe female problems. I have always had, and it just got worse recently. Since having my hysterectomy "it" hit me full force and is progressing fast. The pain and limitations. The last few years the pain elsewhere was gradual. Then it hit me all of a sudden.

I question whether it really is Fibro, or related to my spine. I have done a lot of research and every problem I have is linked to Fibro. Along with mental issues. I was Dx 10 years ago with severe depression and my phsych meds were changed all the time and I attempted suicide 3 times in the last 2 years. I noticed the link and took myself off all phsych med. I have never felt better, emotionally. The only time I have problems is when my pain is not under control. Which my Dr is doing the best he can to help me. I also wonder if all the meds caused the Fibro, because it can be linked to mental. The theorys, are mental, accident, infection. I have had all. I had mono when I was a kid, which can be linked to Fibro. So I am so confused. I feel giving you all the info, the better you may help me. I will talk with my Dr this week about all this. I would like your oppinion. Thank you.

I take neurontin 100 mg 3 xday, which helps a lot. I took it 2 years ago and did not notice a difference in pain then. Strange?
Tramadol 50 mg 3 xday, Lortab 7.5 4xday. Flexeril, don't take very often, I also have Valuim for intercourse so not taken very often.
I have Dilaudid for the severe pain 2 mg 1xday. It has gotten to the point to where The pain is increasing and I am needing the "strong" med more. My Dr is putting me on the Fentanyl patch Monday. I just don't think I can afford it. I currently don't have insurance. I have a agency that will pay $100 toward it, and I have to pick up the remainder. I don't think I can even do that. It is no more than $20. Which I don't have. Not too sure what I will do.

Sorry so long. Thank you in advance for your response.

Christina
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secondchance81601 responded:
hi, christinam4,

i swore i would never come back to an exchange board - but i glanced here, and saw your post.

RUN, don't walk, to a good orthopedic or spine center. research on the net the doctors. but don't even trust that. i had the "best" in my part of the country, people from other countries even come to him, but in the end, i still did triple second opinions, and found a new surgeon, the very best, imo, and he worked miracles.

i had scoliosis as a kid, wore the stupid milwaukee brace for 7 years, and still my spine collapsed, as yours sounds like it is doing. i fought it for years. my old doc told me that i would have to have the full fusion in order to live, but to put it off until i could not do anything else. preferably die first.

i found dr. shay bess in denver. he is exceptional. although i am old enough to be his mother (i'm 54), he treated me as he treats all the teens he operates on, and did his best. You have to search to find the 2 foot long scar. he said with the pressure on my heart and lungs (and nerves to my bowels) i wouldn't have lasted much longer without surgery. and he thinks my recovery (altho i think it is slow) is phenomenal. he had hoped only for damage control.

my surgery was 15 HOURS long. i didn't know if i would make it, so i made all my final arrangements and hugged my kids and husband very, very hard. the next 3 months were a pieced-together haze of tornadoes at the hospital (twice evacuated from my room, once i watched it from my window), moments of absolute Dante-ish pain that even wiped the knowledge of a button to push for relief from conscience, some really cool hallucinations, many fantastic nurses, lots of visits from family and friends, a MRSA infection and more surgery, a drug reaction and subsequent 25 pound weight loss but mostly, a drug-induced floating feeling that made it all tolerable.

i had previously had C4-7 fused, and he fused T-3 through L-5, rods and 28 screws, with cages in L-3 and L4, which he put in from the side. He said I will still need L-5-S1 done in a few years, and I need the cervical redone (at least C-4 through T-3)someday, when i can face more surgery.

I won't lie - it was a hideous time and still is a hard recovery, but having a positive attitude made it very doable. And drugs. I am 10 months out now, and I can just about jog with a walker, and can walk normal short distances without even using a cane. I am on 400 mg of lyrica daily, and vicodin as needed, which isn't often.

90 percent of the pain is gone, and it had been so incredibly extreme I had monthly steroid injections and was on everything from percocet through methadone, just to gimp through the day.

I am happily gardening, have recently built a borgeous tiled woodstove surround, learned sea kayaking, and am planning a huge wedding this summer, and looking forward to everything I have missed doing, like hiking, ATVing, rafting, and traveling, in the past 6 years!

Your young age would aid your recovery. many experts say that scoliosis is NOT painful - it is the other things involved. DO NOT believe them. And I would suggest you don't wait until you are in my shoes, with multiple fractures, no discs left, and irreparable nerve damage - find a good spinal surgeon and get a real opinion there.

Good luck!

Second chance
 
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secondchance81601 responded:
hi christina.....

sorry to go off on that rant. i didn't clearly address all your questions. in my case, i found out that the nerves in your back that can be affected by scoliosis do indeed affect just about everything in your body, from neck and shoulder and arm pain, all the way to being able to walk, to controlling your bowels, to having physical sexual responses. everything.

even my doctor didn't believe that nerve decompression relief would affect all that, but since i was drugged and in a hospital bed for a month after surgery, i'm pretty sure i couldn't have psychologically "convinced" myself well.

DO apply for SS disability immediately! 1) write a letter detailing your impaired state, 2)attach photocopies of all xrays and 3) all dr. office notes. 4) include meds you are on. i have heard all the horror stories of trying to go on disability, but mine took 2 months, and after a couple years you get medicare drug coverage, which often isn't great, but is indeed better than regular insurance. i haven't been able to work for years, and the little income that i get from SS is still a blessing, as is drug coverage.

the surgery and hospital stays were around $850,000 which was covered by medicare. i can tell you that my family would have been financially devastated on regular insurance. even that alone gets me excited about getting up in the morning, no matter how much residual pain i have left!

Again, good luck!

Secondchance81601
 
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happyfeat replied to secondchance81601's response:
Hi Second chance,
I hope this message comes to you at a good time. I see that the message that I just read was posted 2 years ago, and u still needed one more surgery, if you have already had it, i hope that you are recovering well. I am writing to you because i have a very close friend that just had surgery performed by Dr. Shay Bess. Her surgery was about 2 weeks ago and she is feeling very discouraged, and that they are not managing her pain very well, she said she cant do physical therapy in this much pain. I was hoping that maybe you could speak with her over the phone sometime soon. i feel that words of wisdom from someone that has been in the same shoes might help her in her recovery(attitude-outlook). please contact me and let me know, i also would like to know how you are doing? By the way, I read her what you had written about Dr. Bess and about your surgery and recovery, i think it helped some, but i feel that maybe you talking to her would be even better. Thank you and Bless you!


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