Another newbie, saying Hi

[rpspr]

Hello ADR supporters!

My name is Richard, and I'm doing this on behalf of my wife Janay who, besides having back problems, is only partially sighted and needs me to do her reading and Internetting. (Ray Kurzweil has a new hand-held reading machine, and that is one of the things on our to-do list.)

Janay will be 57 next month and has had about the worst luck with the medical community that I know of. In 1983, she was given an overdose of morphine in an ER by a poorly supervised med student that led to respiratory and cardiac arrest for about eight minutes and a ten-day coma. She has the usual sequelae of coma recovery patients: damage to the hippocampus, causing short-term memory loss (anterograde amnesia), and emotional lability. Her brain is re-building her visual cortex gradually, but she still has nystagmus and diplopia.

Her back problems started in 1990, when her then husband, a cocaine addict, kicked her in the back, fracturing her L1. She was in traction for several weeks, but otherwise had no procedures done on her back. (Her divorce from the bastard came through two months after the assault.) L1 healed in a wedge shape, and that is probably the cause of her subsequent right-convexity scoliosis.

In 2005, while we were in Costa Rica, her back started hurting severely, so I took her to a hospital ER where X-rays were done and an othopedic doctor told us that she had "degenerative spine disease" and referred us to the hospital's Pain Clinic. The director of the Pain Clinic, Dr. Adolfo Afonso Lapeira, a good guy, ordered an MRI and performed a discography with contrast, which showed bulging discs and foramenal stenosis at L3/4, L4/5, and a badly herniated disc at L5/S1. Despite epidural injections of analgesics, Janay couldn't get relief lasting much longer than a few days. (I don't know why we weren't referred to a neurosurgeon; there are three in CR, and one of those was in the Medical Tower right next to the hospital. I found out about them much later at spineuniverse.) When she started feeling chronic tingling and numbness in her legs, we returned to the US (with some reluctance: medical treatment is about two-thirds less costly in Costa Rica vs. the U.S., and most of the doctors have done their residencies in the U.S.), and I began researching treatments.

Hoping to avoid surgery, we tried prolotherapy with no success. Also a distraction machine (made by American Back Solutions), which seemed to work for a while. Then I started sending CD-ROMs of her MRI out to various places, and got responses back from a famous spine clinic in Florida, and from Stenum Hospital in Bremen, Germany. Stenum was too many time zones away to easily talk to, but I talked to the people in Florida, who assured me that they could help, using their patented Holmium lasers and "minimally invasive" surgery, so that she wouldn't need ADR, which sounded REALLY invasive.

We got about half way through the testing procedures with the Florida clinic and into the interview with the surgeon, Dr. BM, when we backed out of the whole thing. Dr. BM is an arrogant a**hole, and Janay has had too many experiences with those kind of doctors to allow another one to possibly mess her up some more. (I call him Dr. BM because of his s**tty attitude. Those may or may not be his actual initials. I realize there are several spine clinics operating in Florida and do not wish to impune the good ones. This particular one is near 28° 21' 53" N, 82° 41' 37" W, if you're curious.)

After many more medical misadventures, we have been living just north of Spokane, WA, and have been spending a lot of money on a neurosurgery group that does lots of testing (the latest, a medial nerve block on the right side of L3-5 to see if the facet joints are the pain source: they're not, but we had to spend $3K just to find that out), but nothing in the way of treatment. (They won't even prescribe pain medication; we have to get that from an osteopath, Dr. Burton Hart, another
good guy). They said that she might benefit from fusion surgery, but that they don't do such procedures. Why are we seeing them??

With increasing frustration (you haven't noticed that in my tone, have you?), I decided to sit down and do some more research. I have been re-considering multi-level ADR, but before jumping on an airplane for Germany, I wanted to get more input from people who had actually done it. Over the phone, "Harrison" tipped me off that scoliosis patients are often not very successful with ADR, and he urged me to search for doctors who specialize in treatment of scoliosis. I now have a nice
big folder of bookmarks for clinics specializing in surgical reduction of scoliosis.

I would very much appreciate any feedback from those with scoliosis problems. Also, I'm looking at inversion tables, so any input on those would be helpful. (I'm sure that there are existing threads on those topics that I just haven't found yet. I'll keep looking.)

I apologize for the length of this introduction, and I look forward to exchanging ideas with you folks.

[Terry]

I have adult onset scoliosis though injured myself very early in life. I was flying a very large kite at about 13 - 14 years old when I was walking backwards and hit a concrete lip and fell backwards onto a concrete drainage culvert. I shoved my spine upwards which set in to motion a lifetime of spinal issues. My scoliosis was caused more by my own muscles being so knotted up on one side which twisted my spine out of shape. The ADR surgery I had in 2006 has given me the greatest relief I've ever had with my spine. My muscles are no longer in agony and my fibromyalgia seems non-existent anymore. I am still somewhat stiff in the morning when I first get out of bed but I loosen up nicely throughout the day.

It sounds like your wife has been through hell. I agree with Harrison about looking in to scoliosis treatment. I believe I am an exception due to mine being more adult onset scoliosis. I feel like a miracle though and Thank God for the healing that has occurred in my life. I know I sure have gone through hell.

Welcome to the forum and we will support you and your wife through the process.

Terry Newton

[KBear]

I'm also another newbie, this board has lots of great info & people (just from the little bit of experience I have on here). I don't want to discourage you; but the norm seems to be lots of testing and minimally invasive treatments. I don't know anything about scoliosis, so I don't know if it is treated in the same manner or not. I was just told a month ago that there was nothing else they could do for me, long story short, I found a chronic pain management dr and found out that I am a canidate for ADR. I can't speak for everybody else; but this has been my experience. Nice to have you here & hope Janay finds relief soon

[Johnny Vegas]

Just wanted to say hi and good luck. I would get as many opnions, MRI's, CT scans (preferably all with contrast) as possible to find out exactly what is going on. I also agree with about arrogant Dr.'s! Not only are they uncommunicative, they are often wrong! Also, as you probably know, you may have to go to a major metro area to get the proper treatment from an experienced professional neurosurgen. God bless and good luck.

Johnny V.

2000-2008 Increasingly worse back pain due to running, car and motorcycle accidents/ injections (25), physical therapy, chiro
2007 IDET surgery lasts 4 months at L4-5
Dascor (disc nucleous replacement) surgery
at L4-5 scheduled on 9-30-08 (6 days!)