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

[Michelle Maree]

Hello,

Welcome to the forum although I am new too and havent officially introduced myself either.
My back story is very similar to yours and a lot of peoples I guess.
I have a painfull very degenerated disc at L5/S1 with facet pain as well that doesnt show up on MRI.
I havent had a dicography yet but feel like I need my disc removed as I feel like I have a knife in my back that gets worse with movement.
I too am faced with the question of whether to have a fusion here in Australia or travel to Germany for ADR. It is a very difficult choice to make and hard to know which one will leave you with the least amount of pain and the most function.
I know I have to do something as I am going crazy with the pain and the severe limitations on my life. I am in the process of getting opinions from Germany and hope that it will make the decision easier.
What do you mean by "chemically sensitive disc"? Is that when the disc gets inflamed with movement like when you have an annular tear or is it something different alltogether?
I wish I could help you further but I am in the same boat, unsure of which way to go. I am hoping that further diagnostic tests and opinions from Germany will help me make the most informed decision I can make.

Good Luck,
Michelle.

[dridobits]

Yes, Michelle, you are pretty much correct. I am so sorry to hear others going through and feel a lot for you. I've seen others go through what were going through and come out the other end so I have hope...more hope than I ever did.

A chemically sensitive disc (I cannot relay in medical terms sorry) is where there are annular tears and there is internal disruption in the disc and the nucleus of the disc moves out and hits the nerve bundle. The chemical reaction can cause severe and acute pain. In my case it's really strange.

When I have an episode it's as though I feel battery acid going down my spine. I can't move for maybe ten hours. It's very strong nerve pain if I can even call it that. It feels like Frankenstein is living in my back. Then after about ten hours, it will change the cycle and turn into burning and grinding acute pain for five to ten hours, then the third cycle is dull heavy aching for the same amount of time.

This is just what my back does. I am lucky there is an "expert" on chemically sensitive discs in my area. At least I'm not losing my mind which is what I thought was going on for four years.

I hope to hear more from you and what happened to your back and hopefully we can share what were going through and support eachother whatever way we can. Best.

[Katie]

Oh my soul, your condition sounds terrible, dridobits. I have not heard of anything like that, even on here.

I have an annular tear as well. It showed up in my second MRI, and it well may have been there on the first one, and just not reported. I find it interesting that they call it a 'Chemically sensitive disc'. While I don't have those strange symptoms you do, I am in significant pain which is manageable with the medications.

But I have developed a great many sensitivities since starting on this journey with my back. I've had two anaphylactic reactions in the past six months, ending up in the hospital from exposure to simple things I've always been around. An allergist suggested that my medications have messed up my immune system, and will only get worse unless I get off them.

I am very worried that I will react to the metal and/or polyethylene in the artificial discs and possible fusions I will be getting soon with Dr. Bitan. I haven't had a chance to talk to him about it at length yet. I don't know how they would test for that beforehand.

All this pales in comparison of what you are going through though.

Michelle, I feel for you also, and hope that your problems are resolved quickly. While I have been hoping for the same, some kind of treatment, any treatment that would take away the pain, I am now getting more than a bit nervous. My way of self preservation, I guess...not worrying about things till they are on my doorstep.

I truly don't know how these people 'in charge' sleep at night, with how they are destroying peoples' lives. Their turn will come.

[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