Hello from Alaska

[JulieA]

My name is Julie and I am looking at possible Lumbar ADR. I want to gather as much information as possible so that I can make the best choice for me.

My back pain goes back many years. I was born with mild scoliosis. I first started having problems in 1995 I went through traction, electro therapy, and ultrasonic therapy. After 3 months I was back to my old self. Over the years I have had re-injured the same area and went through similar treatments. However in January 07, I re injured again. Only this time using the abdominal machine at the gymn. I suffered from lbp and sciatica for about 4 months before the massage therapy, PT, and medication got it to settle down. I would still get flares on days that were very active or when I would have to drive a lot but it was manageable. Keep in mind I have been living with low back pain daily for years (about 2-4 on the scale). I was on relefen, celebrex,bextra, you name it I think I have tried it. Currently I have the low back pain, inner upper thigh pain/pressure on both legs, shooting pain into my privates at times,foot pain in arches, small toes, knee pain in the right, butt pain both cheeks, back of the leg sciatic pain intermitten with numbness/pins and needles. Sometimes I feel like ice water is running down the back of both legs. I walk with a limp.

This last November while setting up the Christmas tree I moved some furniture- big mistake. I started getting foot and leg pain so my PCP ordered an MRI and we discovered I had some problems with L4-S1. I went in for selective nerve root injections with a spine interventionist (he said I wasn't a great candidate for discectomy and would recommend ADR) and they only worked for a few weeks (what a great few weeks though). Then I got swindeled into DRX which hurt like heck. Once I found out that my insurance wouldn't cover it I stopped, had 1 more set of injections and started PT again. I asked my doctor for another referral and she sent me to the NS who after looking over my MRI films has agreed to meet me.

My appointmant is next week. I have been wearing a heavy duty hard brace for most activity for the last several weeks because I hurt myself even more simply bending in my car one day. I felt a grinding sensation and experienced terrible pain for 3 days.

My hobby is Schutzhund- competitve dog sport. I work full time from home, as a food broker. Some days are very busy and some days are not. Luckily my employer is out of town and I do not have to go to an office daily. I am married to a very supportive man and I have 1 daughter who will be 15 next month.

I wanted to hold off on surgery until I loose the 30# that I have gained since December. I am down about 8 so far. Ideally I would like to wait until my summer is over. Living in Alaska I want to take advantage of my summer. However I am open to doing it sooner if I am in danger of hurting my self worse.

I am looking forward to cyber meeting all of you

Julie

[Terry]

Welcome Julie. I can relate to the Winter poundage gain. I have about 10 to lose myself after a long Winter.

Welcome to the forum and I hope you find what you need here. Let us know how we can help.

Terry Newton

[Harrison]

Hi Julie,

Thanks for posting. At some point, you may want to introduce yourself to Scott (screen name myprodisc) who is in Alaska. He seems to have done well after his ADR some time ago. Conversely, other patients with scoliosis who have had ADR have seen mixed results. Some really good, some not so good...it's a complicated situation. E.g., with the scoli patients that are feeling pain, is it from the disease that is causing scoli? Is it from excessive pressure on facets, soft tissue or adjacent structures?

Have you gotten any good information from the Scoliosis Research Society? I really like the quality of their disease-centric research. However, I am not clear on their position on ADR for scoli patients. Let me know if you can read their tea leaves...I’ll chime back in soon…

PS: Keep your hubbie.

[JulieA]

Thanks Terry- I like to blame the weight gain on the steroids but I am pretty sure that I ate too much and got too little exercize...

Thanks Harrison. I realize that I may not be a candidate for ADR on L5/S1 I think I am bone on bone now there was definate loss of disc height and things have gotten much worse as of late- but maybe I can get the Hybred (fuse L5/S1 and ADR on L4/L5). I will look for Scott.


Julie

[Liz]

hi julie-

does the doc you are seeing have experience w/scoliosis and disc replacement? if not, find one that does. also, when you see your doc be sure to ask about the condition of your facets and ask about rotation from your scoliosis at the ADR levels. i'd also ask if you are a candidate for stabilization rather than ADR.

my L5 vertebrae is neutral but my spine starts to rotate at L4. therefore, my L4-5 ADR is improperly loading my right facet. often ADRs can correct mild degenerative lumbar scoliosis but i think it gets very tricky when rotation is involved. also, in severe cases of scoliosis the ADRs will move (fail) b/c the spine can't hold them.

let us know what you find out.

best,
Liz

[JulieA]

Yes Liz,

He is suppose to be very good with ADR. I am not sure about the scoliosis mine is mild- hips are off about 2" now and my shoulders are off about 1".

I will ask him about it when I meet with him. I am hoping my husband can go with me so I don't miss any questions.

Thanks,

Julie

[JulieA]

I lost my lap top to terminal illness....lol I finally picked up a new one and started finding my favorites again.

At any rate, I met my NS and liked him a lot. He ordered a new MRI and flexion/extension xrays. The MRI showed slightly worse herniations, but the flexion/extension xrays showed significant instability - severe retrolisthesis L5/S1 and spondylolisis L4/L5.

I was suppose to have a 2 level PLIF last monday but my insurance didn't approve it (not medically necessary). They are now asking for EMG test or second and third opinions. I just recieved the denial letter and the farmed out my request to a medical director/ paper pusher supposed NS. I looked up his resume online and nothing on it said NS. He sure likes to save insurance co's money......

Can you imagine what they would have said if I asked for a disc replacement?

Needless to say I have had a rough few weeks. I am looking for resources on appeals. Any advice is appreciated.

Thanks,

Julie