My story....new here...chemically sensitive disc

[Michelle Maree]

Hi Guys,

Thanks for your kind words . It is really good to be able to support each other in this way. Unless you have been through it, it is very hard to understand what dealing with pain day in day out feels like. And very easy to feel completely alone.

It can be so confusing when there is so many conflicting messages out there:

Some lay people think you just get the operation and thats it, your fixed what the hell are you waiting for.

Physiotherapists advise you against surgery and when youre not getting better treat you like youre not doing the excercises or that the pain is all in your head.

My pain management doctor told me fusions dont work and that your teeth are going to rot out of your head on oxycontin but didnt offer me any other alternative other than more anti-depressants and more excercise. (Hello!!!! I cant do excercise without the drugs!!!!!)

The sad part is the surgeons, they sure as dont encourage you.
I was given about a 98% success for my first operation ,a discectomy and now a few years down the track I am given 70% for my next one,a fusion. And "We will deal with any other problems later,and there is no rush."
Would you take those odds when the first one didnt work?

And then there are the surgery horror stories both for fusion and ADR.

So I am in the position of thinking well could this be the best its gonna get?
Is this the new baseline for my life?
And should I be grateful for the level of function that I have? I could be much worse.
But I cant help but keep wishing for this knife pain to be taken out of my back and to be able to relax in my own skin.

Keep hope alive guys,
Michelle.

[Katie]

Michelle, I think that this is my biggest fear, that I will go through a very painful surgery only to be no better or worse off in the end.

But then I come here and talk to others who have had wonderful successes, and it gives me enough hope to carry on. I've also become friends with a number of people who do not post here, who have also gone overseas for surgery in the last year and have their lives back. All of them have been told by their local doctors that it would be a giant mistake and they would regret it. How wrong they were.

I have learned a few things.....to put very little faith in doctors here; that for whatever reason they really don't have my best interests at heart, and to persevere and find my own best solution through education.

If I could grant wishes for all of us in this situation, it would be to make learning about our options very easy instead of so difficult, and to make financing readily available so that we are not doubly stressed about getting treatment.

That would be my perfect world right now. (Plus getting rid of this darn pain, of course )

[dridobits]

Dr. Derby here in northern CA is the doctor who was the first person to diagnose me and understand my problem. After my block and my description he looked at me and said "oh, you have a chemically sensitive disc".

Other people have different names for this.

Below is the link to what Dr. Derby wrote about this. I had to give it to my HMO doctor as they had no idea what he was talking about. In it is also gives valuable information as to the type of fusion necessary if one wants to do this.

It's really good to read if you think you might have this. Also..PT does not work for this condition to the best of my knowledge it can make it worse as it did in my case.

[jessmith07]

Originally Posted by Michelle Maree

The sad part is the surgeons, they sure as dont encourage you.
I was given about a 98% success for my first operation ,a discectomy and now a few years down the track I am given 70% for my next one,a fusion. And "We will deal with any other problems later,and there is no rush."
Would you take those odds when the first one didnt work?

Michelle...you took the fears right out of my mouth!!!! I just had a laminectomy back in September 2008, and my surgeon said, "This should fix you right up...at least for a few years." I knew the condition of my back wasn't great, and that I might need ADR down the line...but not MONTHS down the line! And so, NOW what? I'm 36 years old! If THIS surgery doesn't work, then what?

But then I have to take a deep breath and remember, I can't go on like this. As stressed-out and strung-out as I'm feeling right now over my upcoming surgery, soon, I'll be on the other side, whatever that is for me. And even if it's not the outcome I'm praying for, at least I tried.

Hang in there.

Jess

[dridobits]

Pressure Controlled Discography: Precision Injection Techniques for Diagnosis and Treatment of Lumbar Disc Disease: Part 5

I'm sorry, I'm not sure I posted the link. My heart goes out to all of you. It's taken me 13 years to get to this point. I think the facet I had cancer and that changed my life in terms of really getting in touch with not knowing how much time I may have has had an effect on my decision making to go ahead. Yes, it's a huge risk. My HMO said "what about if your worse"? Yep it's that risk I take but being bedridden is pretty bad. Looking forward to being bedridden and not being able to take care of myself (live alone and single) and the possibility of winding up homeless scares the heck out of me too.

My heart goes out to all of you. I've thought of posting something like "How do you make the decision, or how did you make the decision"

[Gil Denis]

Hi

Dridobits

Making a decision is not an easy thing, do all the research that you can, ask questions, find the best surgeon you can find for your special spine issue

I am also stuck trying to make that life solution for my spine issues and it is not an easy thing to doTheir is a lot of but what if`s ? what if it does not fix my spine what is next?

We must keep moving forward

Gil

[dridobits]

Well I had my facet block and it didn't help at all. I also had my bone density test which I am still awaiting the results for. I have two appointments with surgeons in June and just can't wait to move forward and get more information on the decision regarding ADR vs. fusion.

So much to think about...especially when it comes to raising the $$$. My insurance won't pay for me to go out and I do not feel comfortable with them doing surgery. They amputated someones left leg months ago when it was the other leg they needed to do. My left, your right is always on my sharpee. More later.

[jessmith07]

I have to have one done tomorrow...what is this test like, exactly? Do they take films that I can take with me to Germany? I'm sitting here making lists of all the things I need to do before I leave next Friday...I'm getting so nervous, I started having panic attacks again last night, for no reason I could see other than the "Date" is nearing...

[dshobbies]

Jess,

Panic attacks are part of this process. Let me assure you, we all survived. Breathing helps but the best cure only happens the day AFTER surgery. All the panic and crazies suddenly disappear

A bone density test is absolutely painless. You lie on an exam table, fully clothed, the machine passes over you, end of test. No films. One less thing to worry about.

Seriously, I know how you feel. I realize it doesn't help but this isn't a nose job, it's serious body altering surgery. Stress is part of this disease and part of the cure. Even after surgery, a little blip will send your mind into overdrive. If you know how to meditate, I suggest it. If not, take some time to learn relaxation techniques... deep breathing, relaxing your muscles. (pm me if you'd like specifics). It helps a lot more than you'd think.

Good luck, Dale

[Aaron]

How do I get the doc to do a discogram that will diagnose a chemically sensitve disc vs. mechanical pain. Is it done with every discogram. I had tears at three levels, with a herniation and tear at T6-t7. I read the report and it just measured the level concordant pain was reproduced.

[dridobits]

Aaron, unfortunately I believe the discogram is the same. There is no fool proof test for a "chemically sensitive disc" or high intensity zone...there are several names for it. It really has to do with a set of symptoms that result from the annular tear. Usually there is a lot of nerve pain and the pain is pretty acute. Exercise usually doesn't help at all. Actually not much helps it but I have results from one or two articles from Dr. Derby who knows a lot about this problem. I can forward this to you if you want.

I finally got to see surgeon number one yesterday who believe adr is out of the question for me due to the fact I have facet arthritus AND because of my bone density test. He is going to do a fusion anteriorally (sp)? and put screws in from the back. If you want to talk more about the chemically sensitve disc, don't hesitate to contact me via pm. Best.

[dridobits]

For a chemically sensitive dic it is imperative that the entire disc comes out...that why doc#1 wants to go in from the front.

[cavalier]

I had arthritis & moderate wear of my facets - I had the lidocaine injection to my facets only before I left for Germany & the good news was it was not my pain - I still have some arthritis there when it rains but nothing like the disc issue for pain i had & i have to be careful in not bending too much but i had that issue always so not a biggie. I too had the chemical issue you speak of - I thought according to my doc's this is quite common but ... point being i had no choice in having a ADR I was also a progressive spondylo & for me 5 yr's later ow post -op with my ADR -it was the best thing I could have ever done - by Dr B. in Germany. I am not as good as I was before my MVA but realistically I am FAR better than i ever was in the 10 yr's of suffering with this damaged disc. Now I am waiting to hear from my insurance for my Cervical - also leftover from that same car accident it has finally progressed to that point - I had hoped it would be staved off - it too was not great after that accident but was manageable compared to my lumbar now it has progressed over time & 2 to 3 levels in my neck & TOS as a 2ndary issue in the arms.
Quite a few people have some wear to their facets in having to live with a problem - get the injection & then gauge with your doc how bad it is & then take it from there. Best wishes - Jill

[dridobits]

Thanks Jill for your information....

Unfortunately, I have a problem with the $$ thing. I can pay for the surgery if I use all my savings but the issue is if I have problems down the line and getting covered. It's complicated. Fortunately, I'll be getting two more opinions next week and will have more information.

Thanks

[dridobits]

Sorry Jill...was in a rush. Instead of the injection you spoke of what I had done was an injection into the facet joint (facet block) which gave me the info. I'm so glad for you the chemical thing is gone. It's so unbearable.