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Doctor's opinion v. "your gut feeling"

CMCCM Posts: 100
edited 06/11/2012 - 7:51 AM in Back Surgery and Neck Surgery
I had a C6/C7 fusion about one month ago and I think it was the biggest mistake of my life. Prior to my follow-up appointment last week I had an x-ray. I asked the surgeon about the C7/T1 disc because I continued to have pain in my middle fingers, and I began having pain in the skin over my triceps and other parts of my arm. The surgeon told me the C7/T1 disc was collapsed. He did not express any surprise. He said it would eventually autofuse. I did not know it was collapsed, and I was so shocked I did not have the presence of mind to ask any questions. Over the weekend I began experiencing intense pain in the muscle in the outer edge of my armpits and into the side of my rib cage. At the same time I began experiencing sharp pains in the base of my neck whenever I tried to lay down my head.

I put in a call to the surgeon early today to tell him about my new symptom and to ask him some questions. He called me back this afternoon. He said he had not idea what the pain in my armpits was from, and that it had nothing to do with my neck. That was astounding to me because it is as plain as day that it is related to my neck. I mean there is absolutely no way of denying it.

I asked the surgeon about the autofuse he mentioned. He said it would take about 20 years. 20 years? I'm supposed to live with this for 20 years?

I asked the surgeon if the C7/T1 disc appeared collapsed on my previous x-ray. He said it had always been that way. Why would you build on a bad foundation? Isn't that essentially what you're doing if you fuse a disc above one that is collapsed? Does that make any sense? Has anyone else had a fusion above a collapsed disc?

It's all so unbelievable. When I was at the hospital and they were preparing me to go into surgery I had a gut feeling that I should cancel the surgery, but I didn't do it because I had had to cancel once before and the surgeon had been kind of miffed about it. He had told me how that OR time could have been used for another patient. I was aware of that, but my cancellation couldn't have been helped. So, I didn't want to make him mad again. How could I have been so stupid? It is clear to me now that that was no reason to go through with a surgery I had doubts about.

I have completely lost confidence and trust in my surgeon.


  • CM,

    The symptoms you are describing don't match C7/T1 as that is the Ulnar. You are stating middle fingers, and that is C6. My C7/T1 is pretty well gone, and I can't feel anything about 4 inches above my elbow (bottom or towards the backside of my arm), or from my elbow (Incl. the bone?) down my forearm into my pinkie and ring finger, plus the connected palm.

    What you are describing is still the C6 nerve root! What did he say about that level? Take a look at a Dermatome map, and you will see what I am getting at. Unless I am misunderstanding what you are saying? The C6 nerve is ABOVE your present fusion...

    The triceps is your C6/7 (C7 nerve) so maybe after the surgery, that nerve root is trying to recover?

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Brenda...

    According to the dermatome I looked at, T1 goes to the area under the armpit. That is where my most intense pain is.

    You are right about the fingers. That pain is intermittent, so maybe it is just a matter of time for healing.

    I just don't know what is happening. C5-C6-C7 are fused/plated together, so they all move as one unit. I think what happens when I lay down my head is that the torque from that "unit" is putting a lot of pressure on the C7/T1 disc.

    Have you ever heard of fusing two vertebra directly above a bad disc? Does that make any sense? I don't think so. Please tell me if I am wrong. I am so stressed out and full of anxiety I am getting dizzy. I think I am in denial about the whole thing. I keep thinking back about what I should have done. I can picture myself lying in the stretcher and telling everyone "I'm sorry but I canceling. I don't think I should do this."

    Oh, and I am now getting pain ABOVE the fused area.

    I really did not want another fusion. The insurance company denied approval for an artificial disc. I asked the surgeon about other options to fusion. I asked him if he could do a double laminectomy instead so I could keep the disc, but he said that would be very painful and that there was a bone spur he would not be able to get to. He said my other option was to live with what I had. What I had before was not as bad as what I am having now. I was so blind. "I have gone from the frying pan into the fire."
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  • I can't find the other map right now. It is better than this one as it is interactive, but this one will give you an idea...Although, my OS told me that because we are all so different that this map is only a guide, and can't always be exact to our symptoms. I'm no Dr. so I can't say one way or the other. Dermatome map;

    20 years to fuse..I don't know, but then why bother with the surgery I wonder if it would take that long I can't imagine too many folks wanting to go through with it. Maybe the Dr. misunderstood something, it sounds like a communication issue to me. It is hard to go with your gut feelings sometimes, especially if you let yourself get more concerned with the other party and feel obligated in some way. I can totally picture you laying there & feeling as you did-so torn. I can't say much that is useful, but wanted to show my support.
  • Weird, I was typing that comment and did not see your last one until after I posted..about laying on the table. I'm a slow typer and was doing a search for the map. Strange because I was picturing you on the table there waiting and stressing, having doubts.
  • Thanks Robin. Maybe it was a communication issue. I don't know. His tone was so dismissive. The first thing he said to me on the phone was "I can't fix all your pain." I'm trying to tell him about new, significant pain that is clearly related to my neck and he's basically telling me he's not interested and can't help me anymore. Reading between the lines his message seemed pretty loud and clear.

    "Hindsight is 20/20 vision."
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  • Howdy CM,

    I know for me, the rear portion of my arm pit is funky, so that makes sense (I don't remember seeing that in your original post?). As to the fingers, that might be the basics of your nerves healing from your fusion (fingers crossed).

    As for levels above a fusion going bad, sadly, YES it can and does happen. Not counting my messed up C2/3 my last cervical MRI showed "bulges" at my C3/4 and C4/5 - but not on any nerves at that time, or narrowing the foremen. I'm hoping to get updated MRI's for my cervical and lumbar next month.

    It's funny though, for some reason *more* people seem to have adjacent level failures in the neck below the fusion, and for the lumbar, above the fusion - but NOTHING is etched in stone as they say? For me (thank you helicopter), I see most of my neck being fused within the next 5 years or less.....

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Brenda I sincerely hope you are wrong about your whole neck being fused at some point, but I can understand how you could envision that knowing as we do about the adjacent disc disease "domino" effect. I've envisioned it for myself as well. For me it's hard not to think of the worst case scenario. Goodness gracious I thought driving was painful before. Now it is really really bad.

    Makes me angry to know artificial discs are available but insurance companies will usually not pay for them.

    The thought that I have *permanently* changed my neck for the worse and can't go back keeps hitting me in the face. Not only did I change it for the worse but that change is going to accelerate degeneration of the other discs. :( It is hard to accept. This is the reason I did not want a fusion. So why did I do it?

    1. I had been suffering for a long time
    2. PT did not help
    3. I did not want to continue taking medications
    4. (and this is the big one)My COBRA insurance coverage is about to run out. I thought I better do it while I still have insurance coverage.

    I thought I was reasonably intelligent but I made some bad decisions.
  • CM.

    "I thought I was reasonably intelligent but I made some bad decisions."

    My title, "Ah ah ahhh" is for you to NOT self doubt yourself. A pearl of wisdom if I may? There have been some studies where the ADR allows "too much movement", and causes even more problems! Remember, a jousting sword is sharp on both sides!

    Much of what I am going through now, should have happened in 1985, so in that regard, I am fairly lucky believe it or not!

    My first fusion (to me) was a zillion percent success, the next too, due to the degree that no more nerve damage occurred. I later developed issues within my fusion, and lost yet another level. Am I bummed, sure, you betcha, but I can't control the changes, so I get my brain to work around "what is, is what is?"

    CM, Take some real nice slow deep breaths, and another, and one more - at a minimum, it gives your body a second to chill. This spiney stuff bites, but we have to play the cards that we are dealt. It doesn't mean we like those cards, but we are what we are. Big *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Brenda

    Thanks for the support and words of wisdom :)
  • I would always go with my gut feeling first. If you question the surgeon then get a second opinion.
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