To revise or not to revise...

[Guest guest]

....that is the question. I'm sorry it's a long question, but I so hope you'll take the time to read and answer, because I don't know where else I could get the kind of opinions and info found on this website. So...Hi -- This is jackie b., I think some of you may remember me from the late 90's. I saw some revision doctors back then, and decided to put the decision off for a while.QUESTION: I'm fused from T6-L4, had poor correction because my first rod broke in three places over the months after surgery, and they were afraid to straighten me back up when they went in and put in Harrington rods 6 months later. I have a good bit of rotation, and plenty of pain over my whole back, but worst at lower right. One problem is that I had cancer in my right kidney in infancy, kidney removed, and radiation (I was 9 months old, in 1962 ). I have virtually no muscle or supportive tissue on my right torso, and the bones are stunted. It looks like a shark took a BIG bite out of my side. So I can't strengthen those right torso muscles too much, because they were burnt up by the radiation. Meanwhile my lower/major curve is to the left, so that right side has very little support, and it hurts a lot. Because of this mess, revision doctors are not too sure how much correction they could get, even if they did revise.I saw an orthopedic surgeon this month for the first time in years, because my pain is getting uncontrollable. I had a CT myelogram last week, which, unsurprisingly, showed "very severe stenosis" at L4-L5, L5-S1, and then my SI joint. He wants to go in, straighten those joints to the degree he can, and instrument and fuse them. Also he'd remove at least the bottom of the Harrington rod. He is an SRS surgeon, but he isn't enthusiastic about revision, because of the trauma, scarring, potential for problems, and lengthy recovery time. This doctor is in Pittsburgh, at UPMC (Pitt) Montefiore Hospital; does anyone know any Pittsburgh revision doctors?(The next paragraph is Additional Background, if you feel like reading it! Or skip it.)[Around 2000, I started having symptoms which eventually turned out to be two other health problems...first, I had worsening uterine fibroids and eventually became severely anemic. I had a hysterectomy, but many of my symptoms did not go away; There followed 2 horrible years of frantic anxiety, which was finally diagnosed as hyperthyroid disorder. It took about a year to get my thyroid corrected. One of the symptoms of hyperthyroid is hmm...poor impulse control? Poor short term memory, and poor judgement! So, I had left a long-term relationship, moved away from all my friends, just made everything into a big mess, spent my savings moving around (trying to outrun the anxiety...) so I ended up with severe depression. In the past year or so, with an excellent counselor, and depression and anxiety medications, I am finally feeling "human" again!]Now I have to decide. The pain is almost uncontrollable; In addition to pain meds and cymbalta (for the nerve pain), I simply spend about 20 hours a day lying on my back. And the doctor says that, with this much stenosis, I'm doing permanent damage to the nerves while putting off surgery.I'm scheduled for some PT with an excellent scoliosis therapist. I want to get stronger before the surgery, but the REAL QUESTION is: if I just get the last two spine joints and my SI joint fused, will it help? Will it rule out later revision surgery? I really don't want to have to go through revision, if just fusing and instrumenting the bottom of my spine would help, and it especially scares me that people are having multiple revision surgeries! That's the main thing I noticed since I started sitting in on this site again.. Still, I am considering going to the nearest place for a second, revision-oriented opinion; that would be s-Hopkins in Baltimore. Does anyone have an opinion on revision there? I hear Dr. Kostiuk has retired.I value the experience people bring to this website, so anyone who wants to throw their 2 cents in, please do! I won't treat any of it as gospel; I know every case is different, and we're always guessing when we make these decisions. Thanks so much--jackie b. From: mail_margo@...Date: Fri, 11 Jul 2008 10:27:57 -0700Subject: Re: pain pump & revision surgery

,

I have chickened out of revision surgery. I am fused from T2-S1 and I've had the pain pump since I March or April 2003. After reading your post it reminded me of something my surgeon said when some of my other specialist were wanting to remove it so they could see. His response to me was that it shouldn't be taken out unless it's a life or death situation. Now, he was the one sweating over getting the thing in to start with and I imagine he's not wanting to try that again. None of these surgeries are easy on us or the doctors. The pump surgery was one of my easier ones to recover from but I do have to remember it's not so easy on the doctor trying to find a place to get the cath. in.

Take good care...

Margo

From: Rasche <elizabethrgonzalezgmail>Subject: Re: pain pump & revision surgery Date: Tuesday, July 8, 2008, 4:54 PM

Margo, I can't quite recall your whole story at the moment. Are youlikely to need spinal revision surgery any time soon? If so, I wouldurge you to get a few more opinions about the pump. Even if they hadto take it out, I would want some assurance that they would put itright back in! Of course the pump is really not a big deal compared tothe intrathecal apparatus -- replacing that could be quite difficult,particularly in the wake of further spinal work. (I've now had four orfive pump pocket revisions and pump explant/implant procedures, but mysurgeon never touched the catheter in my spine through all of that --remembering what a bear it was to install that portion of the systemin the first place!) I'm sure it's easier to operate on the spinewithout a catheter in the area, but I would think some surgeons mightbe willing to try, considering what is potentially at stake. In mycase, that is adequate pain

control for the first time in my years ofliving with iatrogenic flatback syndrome and undergoing revisionsurgeries. Moreover, if there were a time when a patient could benefit more thanever from an intrathecal pain pump, I would think that would have tobe during the post-op period following spinal revision surgery!Best,> > From: yevone.turner <yevone.turner@

....>> Subject: pain pump & revision surgery> FeistyScolioFlatbac kers@groups .com> Date: Monday, June 30, 2008, 2:27 PM> > > > > > > Has anyone every gone into revision surgery or any spine surgery after > or while they have a pain pump in place. I have a Medtronic pump the > cathather runs up to apx t-4 & down to my waist. Will it have to be > removed during surgery, will they automatically install a new one? > Would love to hear from others who have had pumps. Thanks>

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