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

[dridobits]

Hello all, I have posted a few times and was asked about my story.

I was a runner for a long time and a dancer. I was competing in a swing dance competition when my partner threw me across the floor by accident and I landed on my spine. That was 13 years ago.

I went to emergency at my HMO...they referred me to pt and began having acute nerve pain. I had to fight to get an MRI, treatment and it was somewhat of a disaster. I left work as I could no longer sit and went outside my HMO to get treatment and a proper diagnosis.

After three years of going around the country I finally got a diagnosis after a facet block from someone who really knew about my problem which many doctors don't really have expertise in. This problem is called a "cheically sensitive disc". The only option then was fusion. I chose to live with the pain as I saw so many fusions that did not take.

I have lived off opiates, been to countless pain management courses, had countless epidurals, many types of alternataive treatments...basically everything I could to avoid fusion. I started a new life....a life of disability and doing the best I can. In a way I have to say I gave up for awhile. I also had to deal with cancer and going through that battle. That was my primary battle and I'm happy to say I'm in remission. I fought my HMO to get treatment to no avail when it came to my back. It's just not something they are good with. I've tried to fight my HMO but it would cost me my house and they still wouldn't send me out.

A year ago I learned about ADR and it's taken awhile to pull off the discogram and all the other tests I need. During the discogram it was noted I have moderate facet joint issues. They said I needed a facet block to see if that would help out to ruile out the facet joints as an issue and to help determine if I would be an ADR or fusion candidate. I had facet blocks before and they never did a thing but they said since it was a long time ago, they had to do another one.

I had that done half a week ago. I also had a new MRI which i will get the results from in the next week or so. I am now waiting to see if that helps but so far, i'm having no relief. I'm going to have my bone scan soon and then will start my trek for the right surgeon and to figure out the ADR vs. Fusion thing and where I will recover.

The statistics for surgery benefitting patients with a "chemmically sensitive disc" fare much better with surgery than without. The percent where people improve with this condition is over 80% according to the findings of the person who diagnosed my "chemically sensitive disc". I also have DDD and other issues but the irritated nerve pain is the worst so the disc must come out.

I've had trouble finding people with this condition so i've felt really alone with it. So in the next month I will see various surgeons as well as considering going to Germany. I feel a overwhelmed by it all but I feel this is a risk I am willing to take. I can no longer grocery shop and do what I need to do to take care of myself and have little help.

Anyone else have a chemically sensitive disc and been through the decision making process of ADR vs. fusion with a moderate facet issues? It's hard to make the decision to stay here or go to Germany for me. I am sure my HMO will not pay. I will take a second out on my home to do this but I feel I must move forward. Any ideas and suggestions are welcome. Thanks.

I have a June appt with Dr. Bitan in NYC. I have also seen Dr. Berven at UCSF and have spoken briefly with Dr. Zeegers who does not seem to be doing surgery right now. I respect all the above surgeons although a little concerned about UCSF...although they are fantastic they are a teaching facility and any student would be able to work on me as such.

As I am not yet 5 years NED (cancer free) I don't qualify for any trials due to this. Some of the well known ADR docs (So Cal) won't work with me as I have a past cancer history.

Thanks so much for listening.

[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 )

[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