AN update

[steve55]

Hello everyone. Its been a while since Ive updated here. Well, as many of you may recall, 16 months ago , Dr B did a C4-7 ADR removal converted to fusion. Well, over the past 6 months, I have a problem that has slowly been getting worse. Its either T1 or T2 , but my best guess is that its T2 disc that is giving me problems now. This is starting to look like the same movie Ive already seen before. Ughhh. Just like before, it started with a deep dull pain that is extremely tender. Touching it is like as if it is severely bruised. In addition, Im just starting to have ever so slight burning in my arms and hands, and also that familar below the waste irritation sensations like I once had before I went to Dr B for my original surgery. And just like before, epidural injection worked for a few days and that was all. Like I said, Ive seen this movie before.

I thought thoracics are rare to blow!?? Over and over I read about how so rare that is. My thoracic discs were not at all compromised prior to surgery so this really shouldnt be happening at all, much less so FAST. How can a healthy disc breakdown in just 16 months??? It doesnt make sense.Interestingly enough though, I did notice early after surgery that this same spot was already sore and tender and so was all my T spine for that matter, but the rest of the T spine only a t ad bit sore and even today all my t spine is still ever so slightly tender at times when I bend or move it alot. I guess Im saying that I can feel how much stress this fusion is putting on my T spine.

And how strange is it that this may very well be the disc next to the adjacent disc that is causing this issue now? Unbelievable. My August CT scan reports c1 through T2 as normal. I guess it will be on to an MRI next. I cant even think what it will mean if the MRI shows normal. On the positive side, my symptoms were 100% by surgery before, so I hope that bodes well should I have another fusion surgery. Another relieving thing to read is how there are alot of people out there with 7-9 level fusions in C and T spine and are doing very well, skiing, running , and most seem to be for the most part, pain free. So that was a relief to see that if worse case occurs and I get another fusion at T1 or T2, another fusion wont necessarily have dire consequences even though 4 levels is alot. But I do wonder, am I going to cascade 1 level at a time every few years?? Maybe even more so as more and more levels put more and more stress on the next adjacent level on down the T spine line. Then again, Ive read that T spines dont move much so perhaps it wont be as likely to cascade. I also read that there is no real need for ADR's in the T spine due to this lack of movement there and such little disc thickness, especially if its T2 as I suspect it is.


PS- I feel guilty for even complaining about my situation after reading Kajari's ordeal. Lord have mercy on his poor soul. Talking about a nightmare coming true. I dont feel so sorry for myself after reading his ordeal.

[dshobbies]

Steve,

First, though others may have it worse doesn't mean your situation isn't bad unto itself. And as 1 level melds into another, you have plenty to complain about. And honestly, hardly anyone with severe spinal problems which were resolved (or not) with surgery has no residual problems. Though considering my surgery successful, I live in constant pain however managable. I occasionally have my pity parties despite other's successes and failures. We all want to see the world through a half full glass but damned if that glass isn't half empty at times.

Then... after all you've been through you find yourself back to where you need more surgery and possibly more surgery. However, if others who've had 7-9 t-spine fusions live somewhat normal lives, you have hope that you too can be pain free. And since they don't move much to begin with, adjacent segments have little to worry about?????

If you do decide to have another surgery, I so wish you well. I can imagine you're saying 'enough already'.

Off topic, I just smiled as I wrote that - I remember saying that exact phrase when in the throws of labor, shortly before giving birth. I would then say to my crying babies 'enough already'. I would say the same to my toddlers, my children, my teenagers, my young adults and now my 30 somethings. I suppose this is life!

Whatever happens next, I wish you good luck, Dale

[steve55]

Thanks DS . I went to my neuro today. When I showed him where it hurts, he said I was pointing to t4!! But it could be referred pain from a disc above. He said if by chance fusion was necessary at any part of the t spine, they do not do discotemy and allograft or autograft. He said they simply do rod and screws posteriorly from the back. WOW! I asked him if I had a bulging disc or tear causing the pain, how would a fusion without discotemy solve my problem. He just said I'm getting too far ahead of myself and let's wait on the MRI . I personally believe that the discs are causing the pain and I cant see how anything short if a discotemy will do. Heck, I never heard of a fusion without discotemy. I'll have to definitely get a 2nd opinion on that. He also says they dont do discograms to help confirm which disc is the painful one. I guess he is one of those docs who don't trust those tests.

I wish it was higher up. If a 2nd opinion suggests a fusion with discotemy, I think they have to collapse a lung and go through the rib cage area. Sounds hard core.

[Maria]

Don't get ahead of yourself. Get the diagnostics done and then perhaps get several opinions. That makes the most sense to me.

[cp7959]

Steve,

Any update on that MRI?

[steve55]

Hi all. Yes! To my amazement, the MRI is for the most part clean!! Though, that's just based on reading the written report. Havent met with the neurologist yet. I dont see how it was so clean given that Ive had occasional slight burning in my hands and arms, and also have experienced the old below the waist nerve tenderness (but very slight, but noticeable)

The only thing that was found wrong was as follows below. Everything else was normal so I didnt retype the good parts.

Findings : There is mild disc space narrowing and anterior marginal endplate vertebral spurring from T4 through T 10.

Impression: Mild multi level mid thoracoc Spondylosis, but no disc displacement, and no canal foraminal stenosis.


Upon looking at my films, I do see very thin Thoracic discs, and yes, the T4 disc looks the thinnest and the darkest.

However, I have good news to share . About 8-10 days ago, I switched from neurontin (which seemed to of stopped working) to Lyrica. And within 2 days of being on lyrica I was pain free!! I went from pain levels of 5-6, and having to take pain meds almost every night to a occasional pain level 1-2 on a few nights a week and mostly no more pain meds . Ive taken meds for pain only once , maybe twice in the last 12 days. I thought Id wait a week to be sure it wasnt just a temporary natural reprieve. But having 9-10 days 90% pain free, I know it has to be the lyrica. I was pain free within 2 days of starting lyrica. And I dont have that deep tender sore spot over T4 anymore either. If lyrica was just blocking the nerve pain, I would have thought Id still have that sore spot over T4, but its also gone.

Lyrica kicked my pain's butt! Total KO. Amazing. Hope it stays that way, Mark asked me to do a seperate post about my Lyrica experience so if you see it posted again here, thats why I did it. I pray this isnt just a temporary relief. We'll see

[steve55]

Well, soon after I praised Lyrica so much, it suddenly stopped working. One thing Ive learned with spine issues is to not get too overconfident for very long. For example, as soon as I emailed Dr B and Dr Sullivan how well I was doing last summer, I soon crashed again. It's like some kind of jinx for me. Anyways, Ive read that the body isnt supposed to develop a tolerance to these antivonvuslants type drugs : ( Gosh. I cant imagine what happened then. My pain is so bad before and after the lyrica, its hard to believe it was a just a coincidental pain free stretch. I may get back on lyrica again to see if I get the same result as Ive been off of it for several weeks now since it stopped working. But my doc wants me on Cymbolta next. I guess the Lyrica experiment will have to wait.

UPDATE- so, my CT and MRI cervical and Thoracic show nothing wrong other than thinning thoracic discs. I had a long talk with the pain mgt doc (I believe he is one of the best here in Dallas, TBI uses him and he is in many magazine "Top docs" lists in peer to peer reviews. He is seasoned and I trust him). The pain mgt doc agrees with the Neuro. My films are clean. I told him that since my pain is at T4, what if I have "Internal Disc disruption"? (A condition where the disc has tears and Ive read often isn't picked up on MRI and CT's). He seems to think the MRI would have picked that up if that was the case. But what I read online since then says otherwise. So I need to ask him about that again. I found studies whose results said the following :

1. On magnetic resonance imaging 21 of the 48 discs appeared normal.
However, on discography, only 10 were judged as normal.
Both studies supported the concept that discographically provoked
concordant pain is seen in symptomatic degenerative discs studied, but
that in asymptomatic individuals, very little pain typically is observed
even in morphologically abnormal discs.

2. Thoracic discography may demonstrate disc pathology not seen on
magnetic resonance imaging. In addition, subtle, yet potentially
painful disruptions in disc morphology can be missed by MRI in its
current state.

I know there is a huge controversy about discograms. My neuro doesnt believe in them but TBI and Dr Bertagnoli seem to. Ive read Mark's extensive reply to Aaron's post about the controversy surrounding discographies. My pain mgt doc as experienced as he is, made a comment he hasn't done a thoracic discography before which surprised me. But he would consider it if we run into dead ends in the diagnostic process. The internet research seems to indicate they are extremely rarely done. But how else will the docs know if you have a "internal disc disruption" or torn discs leaking fluid hence causing all the pain?? MRI's wont necessarily catch them right? DO I have that right?? If this is right, how else can you be sure whether you have tears in the thoracic then? If I do have tears missed by the MRI, then doing a thoracic discotemy would fix me just as the cervical discetomy resolved my pain. What makes that more convincing is that my current symptoms are mostly the same as before my cervical discotemy minus the radicular arm and hand pain.

Anyways, I am scheduled for facet joint injections at C3 and T1 next Tuesday. Based on his diagnostic experience, he feels my pain is "referred". He thinks the T4 pain is originating from one of the adjacent level discs or facets next to my 3 level fusion.

So, I guess I'm in the same boat as Mark. Clean films but still tons of pain. I guess it leaves docs guessing as to the cause. I wish my films showed where the problem was so at least we know what to do.(sigh)

As it is now, I'm not eating much (losing weight), Ive been missing work because I cant get out of bed due to the sheer exhaustion of pain. I usually get up at 10:30AM but the last few days Ive just layed in bed till 2pm, just cant get up due to the physical exhaustion and toll. Yes, the pain meds help, but they arent a cure all and I cant see myself taking vicodin 4-5 times a day. I'm thinking that's just too much for the liver. So once again, Im back to being somewhat terrified as to what the future holds. The thoughts of Social security disability start popping in my head again. (Ughh)

[Maria]

A stronger longer lasting pain medication like Methadone or one of the other pain meds in a catagory such as this? Vicodin wouldn't even work for a toothache on me. I realize pain meds aren't a cure and I can understand not wanting to "go there" re pain meds yet if something stronger/longer lasting would allow you to be upright and mobile that's better for your overall functioning than lying in bed because of pain (which I did for weeks to months and over a long number of years when my back would go out and long before I started pain medication).

Sorry if you've stated you cannot take pain meds for any reason or have already tried a number of them w/o much help. I realize this post goes back a way. Starting the Cymbalta is probably a good idea. Hope you get some relief again and sorry to hear you crashed on the Lyrica after some really good relief. Whatta pain!

[dshobbies]

Steve,

When I read you sometimes don't get out of bed until 2- it brought back memories of a place and a life I hated. And I knew from where my pain originated. My heart breaks for you.

It does sound like your pm is more receptive than others as to both listening to you and trying to find the source of your pain which should/could/would ultimately lead to the 'cure'.

Until then, know you are in my thoughts, hopes and wishes.

Dale

[jsewell]

Hi i would also agree with Maria about vicoden. It does absolutely nothing for me. I have been on morphine sulphate (long acting) and 20mg of percocet as o ne dose about 3-4 times per day.
I did request a thoracic discography and my doctor agreed it was a reasonable request when i had the unrelenting , worsening thoracic pain continue . I too had work on C4-7, but mine was a fusion. He never suggested the pain was from a fusion.
In my discography the pain generator was found although all my discs had some level of tears and herniation. The T7-8 brought me to tears and moaning. Same pain ,but a lot worse. Another disc was also a pain generator and some although they had problems, did not produce any pain. Some were moderate to mild and the surgeon would not operate on those even though my surgeon asked him to. I was referred to DrRegan for the Vats procedure.

If you are so sure, ask for discography , but please have a doctor find someone who has done the thoracic before.
Get some stronger meds from your doctor if what you have does not work. I was also put on cymbalta. Works as an anitidepressant, but not a pain reliever for me.
Most of all good luck with all of this , you are not alone
judy

[newhere]

"Upon looking at my films, I do see very thin Thoracic discs, and yes, the T4 disc looks the thinnest and the darkest.
Same here!
I also see dark t6 t7 with small protrusion. but no one belives that thoracic pain can be related from herniation.
However,i think when the disc is black,something is wrong with him.
Im also fighting with" who will perform discography for my thoracic" ???
good luck to you

[steve55]

Thanks for the replies everyone. Getting everyone's opinions helps me work this thing out. The benefit of reading the replies tells me not to lose hope yet given there are much stronger meds out there. I thought vicoden was one of the hard core stronger meds but I guess not. Wow.

Jsewell, about finding a doc with thoracic discography experience, well, I did a consultation with Mark about all this and if I read him right, he said it isn't necessarily a bad thing or something to worry about if that doc hasn't done thoracic discograms before. I believe Mark said that it is much more important that the doctor is good at what he does, good at discograms. Maybe a certain doc has done a lot of thoracic disco but at the same time he may not be as good and talented at doing and interpreting them appropriately, especially when it comes to being able to seperate false positives from the real bad discs. Like I said, TBI (Dr Zigler) uses my current pain doc for their discos so that along with my doc being on the top doc lists speaks volumes to me about his talents with discos. TBI wouldn't use him if they didn't think he was the best,.... right?????? Well, that's my thinking. Perhaps , to make 100% sure, I could have a 2nd thoracic discogram with the disco doctor of choice of whichever surgeon plans to do surgery on me. A double check would make sure we are removing the right disc???

I will add that my pain doc was adamant that I dont want to have a thoracic surgery. I explained to him that ive read many people who have had it done successfully and are now pain free. He brushed that off and said maybe a few have had success but too many others did not. He REALLY doesnt support thoracic surgery. Well, if all I can do is lay in bed all day and my life is ruined anyways, why the hell would I not do it? You gotta do something, especially if the disco is positive at which disc is painful.

[jsewell]

I agree with the idea that if a doc can do a disco on one part he can certainly do it on the thoracic spine. THe hardest part is convincing someone to actually do it. Good luck with that.
I certainly was very ready for surgery when the offending discs were named. My horrible thoracic pain is gone . I had a serious complication , which i am working on , so you never do know what will happen .
judy

[cp7959]

Steve, so sorry to read your still going thru so much pain. After reading your posts I thought I would chime in.

Some of us have had such radical multi level surgeries, it should be to no surprise we are in some level of pain. I would imagine our bodies trigger off more pain alarms than a "normal" body would. From nerve pain to myofacial pain, to bouts of pain free day's to debilitating days.

As you, I get weird things happening. I went several months with no arm nerve pain, then all of a sudden I will feel nerve pain from my arm pits to my fingers. Then it will be gone. Make's no sense to me. Any ideas? I've had muscle pain and trigger points around my thoracic spine and shoulder blades. Then I'll get reprieve. It's a roller coaster.

I did CT's, MRI's, I had bi-lateral ablations at ever cervical level to T1. Trigger point injections, myofacial release and I'm sure I'm missing something. Today I take about 800 mgs of Ibprofen during the day and flexeral with 600 mg of neurotin at bed time.

Here's what I do know. We went into surgery hoping for a fix, but there was no magic bullet. So has history taught us anything? Do we try and wait out the next "pain problem". Or do we find ways to deal with it till it passes, if it passes. Everyone's pain is different. I hope you can find relief before you jump under the knife again. Remember there is no going back.

As for Annular tears showing up on MRI's, I have one that was clear as day at L5/S1. So now I'm dealing with that. Aren't spine problems a blast.

By the way my Dr. had a full blown herniation. He said he was crippled for 18 months but refused surgery. He made it to the other side. Keeps fit, eats right and hasn't had pain on 8 years. He may be one of the lucky ones, I don't know the statistics, but it's hope.

Good luck and I hope the best for you.

[steve55]

Thanks CP. Yea, it's a tough decision to sit and wait it out hoping your body somehow corrects itself or to go under the knife again. That is great news about your doctor's story. I've heard many stories like that and those stories is what keeps us going sometimes. Hope makes life with a little easier to deal with. And there is hope that the technology will get better yet.

Myself, I feel very confident that what I have is the same exact thing I had last time. I would bet big $$$ that my discogram will show what the MRI missed, a trashed disc that is incapable of holding the dye. There is no way I can hurt this much yet have a clean MRI and CT . In fact, my previous MRI 's never showed I had tears and leakage either. It wasn't till the discogram that we saw how bad the discs were. Dr b said my cervical discs were in horrible shape and couldn't hold any dye at all. I've searched the net hours on end and of the few thoracic surgery cases I could find, most did well. I'm willing to go for it. My life is already the shits now, it won't be much different if something doesn't go as well as planned, well, unless I got paralyzed I guess.

I'm going to try all the treatments they throw my way for now, meds to injections etc, and then get opinions from dr b, dr regan, and dr bitan. In the end I feel dr regan would be my man. I'm thoroughly impressed with his skills and reputation. I really liked that he did a late night phone consultation with me and it was no charge (if I recall correctly ) but that was thanks to mark's connection with him. And just like last time, I predict I'll be fixed once they get that bad disc out. I've seen tons of stories of people who are fused at many levels, some almost the entire back, and most of them have little to no pain. But I like mark's advice. He said "take your time, don't rush these things". Im really appreciative to have mark's services available to me. And countless times, mark got through the red tape direct to the top docs and can help discuss my case with them and then mark can lay out everything in simple laymen's terms. I can't believe how often I read posts that accuse mark of being like some kind of charlatan or that he charges too much to escort people to Germany. His services and input are invaluable and people need an experienced spine person to help them through. It makes a big difference! Mark has spent hours by phone with me during my previous surgeries, half of it at no charge, and his input gave me so much peace of mind. It's nice to have a knowledgeable and caring person who knows what you are going through and whi also has connections when needed. And of course he should charge for what ge does, how else can he do it and still make a living? Well, I'm getting off track here but I've read some things at other boards that are flat out wrong and it just amazes me. Why do certain people have to trash someone who truly "cares" about helping people.