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 )

[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

[treefrog]

Jess, to expand on what Dale said, the bone density test results should just be a few sheets of paper with charts and numbers (at least that's what mine were).

The numbers they are interested in are T-scores (and maybe Z-scores). My problem was determining which T-scores they wanted, because there were a few of them. I would ask Dr. Fenk-Mayer if she wants you to fax them to her before you get there, or if you should just bring the results with you.

I have stuff to do before I leave work, and getting ready for the trip. But I don't want to do a lot of it, especially the work stuff. I just want to be in Germany and have the surgery so that I can know what the result is likely to be. If I could fast forward three weeks, I would.

[dridobits]

Jess, I'm not sure I understood if you were having the bone density test or the facet block. How are you doing? I think by now you have had the test?

Tree, I am so rooting for you and the best possible outcome!!!!

Let us know how things are going for you both.

[jessmith07]

I had the bone density test yesterday. The worst part about it was laying on my back OUCH! That is so painful, even for just a few minutes.

they wouldn't give me a copy of the printout right then, but said they would fax it my doctor Monday or Tuesday. I also had then fax it to my Chiropractor, as I have an excellent relationship with him and I know he'll get me a copy without any flack.

[dridobits]

Jess, glad that is done. I have mine last week and will get the results soon. I am going to see the Ortho surgeon at my HMO to discuss surgery although I do not think I will have them do it. Long story. They did require another xray and more tests and have long question list so I feel I'm starting to make progress.

Hope the banks will help me out. HMO appt. is in three weeks and have appts. in NY with Dr. Bervin in June and another appt. with Dr. Neuwirth in NYC also. More later.

[Keano16]

Dear dribobits, and other members,

I just read your first post (I did not had time to read whole thread).

I am also having a chemically sensitive disc, to be concrete my diagnosis is:
"HIZ (high-intensity zone) in L4/5 and possibly in L1/2".

HIZ are annular or radial tears inside disc.

I cannot stand, sit or lay down in bed for more than 15 minutes. My life is destroyed.

I already had 2 surgeries:
11/2007: Interlaminectomy/Foraminotomy
02/2009: Endoscopic Discectomy

Have you treated your annular tears or you are still waiting?

Regards

[dshobbies]

Hi Keano and welcome to the forum,

Sorry you find it necessary to have found us but now that you did, we're here to help.

Have you ever heard of ADRs? How may doctors have you consulted with and what did they tell you. Please start a new thread and tell us about yourself.

My best, Dale

[Keano16]

I've heard of ADR, but I need to investigate more about it.

I will soon publish our full story.

[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.

[cavalier]

Hi - That is the same thing I had done is a facet block - I just specifically asked for it to be Lidocaine only as I didn't want any steroid as that can cause bone loss & I have ostenpenia but in either case the Lidocaine is enough to give relief temporarily to see if the facets were a pain generator. You didn't state if yours are a pain generator or not. If you dont mind am wondering how that went. As to insurance barring you from future coverage for anything related if you did a ADR - I woudl be checkign into that as my insurance didn't pay as it was not FDA approved at the time of my surgery - but they have paid for any follow ups Xrays & MRI & EMG's & doc's etc.

Good luck with whatever you decide - Jill

[dridobits]

Hi Jill,

I should have asked for lydocaine but to tell you the truth I don't remember what I got. I got no relief at all from the facet block and I didn't on the first one.

I have gone in depth and know what is covered and what isn't. My HMO isn't really set up to do or handle ADR revisions for sure. I can go out of the HMO, and they will do follow up care, but if say I have an emergency in the hospital as a result of the surgery this they will not pay for. If however, I leave and check out of the hospital they will cover it. Strange. Basically, they will cover after care but I will have had to leave the hospital. Also much of this is on an "individual" basis. So my bigges concern is having a problem where I had to stay an extra week in the hospital, or an ADR revision problem down the line which I couldn't really pay for.

I have an appt. w/Dr. Bitan on this Thurs and one after that, so for now it's mostly informaiton gathering. It's really important to get every freaking detail when it comes to the insurance. They won't send me out for ADR as they do it (like only 2 cases so far). They won't send me out on their $$, it will have to be my own.

The doc last week said for me he preferred fusion as with my osteopenia and facet arthritus he was afraid of the disc slipping. This, obviously is only his opinion.

I'm wondering how people deal with the issue of having the surgery in Germany and how to deal with the financial issue if there are problems down the line.

So, I'm off tmrw. to the Big Apple to see the docs. Will report more later.

[cavalier]

Hi there the block not giving you any relief is a good thing - if I am understanding you correctly as in my case it was NOT my pain generator.

I have heard good things about Dr Bitan - do let us know what he has to say on you.

As to paying for surgery in Germany we did that as back then I could not keep waiting longer & it was 04 & not FDA approved here yet. However, with that said now i am facing a need with my Cervical and it is awfully hard to pull more money back out of the hat as we are older & jobs the economy - 2 kids in college we are paying for etc. So getting insurance to pay is a must for me - I am facing at least 2 levels for sure possibly 3 TBD by discogram for the 3rd.
Due to being more than one level some doc's here say they cant do anything but a fusion as not a single ADR so I am still looking as i would like at least 2 concurring opinions.
Jill

[Keano16]

Dear dridobits,

I am son of person who wrote few PM's to you. I am handling her case for past 2 years and I will continue writing from now on.

I have 1 normal message for you, and 1 very very important.

1. Go to neurosurgeon and suggest him that you need some type of intradiscal therapy (not IDET!!!). That may help in healing your chemicall reaction between nucleus and anulus.

2. Very important message, light on the end of the tunell:
Yes, PLDD (percutaneous laser disc decompression) can and might help you (and my mother).

I am doing a big research on chemically sensitive discs, anulus, nucleus, role of sinu-vertebral nerve, etc.

As you maybe know, PLDD was founded in 1986. by Daniel Choy, Neurosurgeon from USA. Method has very high rate of success (BUT only when used on INDICATION!!!!!).

I bought PLDD book from Dr. Choy, and read something very very interesting regarding our cases. So, PLDD is used for treating herniated (protruded, extruded) discs.

One patient came to Dr. Choy and asked to be operated. Dr. Choy didn't wanted to do it becuase patient had this diagnosis:
"L4-5 disc lesion".

Patient again isisted to be operated, Dr. Choy signed some papers to exclude him of being responsable to any damage to this persons health, operated him with PLDD (1500 joules) and surgery was 100% success.

Why is this case connected to us?

1. My mothers neurosugeon will try this approach in September
2. Why? Lesion is sometimes called "Grade 3 Radial Anular Tear", which irritates sinu-vertebral nerve. Irritation causes pains in 3 dics. Quote "Amazingly, the sinuvertebral nerve also innervates (connects to) the disc above and below". This irritation is often called "Chemically sensitive disc".

I hope you have doctor that has laser device.

Regards