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Thread: Brought to my knees but pain atypical

  1. #1
    Join Date
    Aug 2012
    San Francicsco Bay Area

    Brought to my knees but pain atypical

    Hi Everyone:

    What to do?

    The pain has been so bad at times that it has literally brought me to my knees in tears. Given my level of facet disease (around a level 3) and the two completely collapsed discs (bone on bone) it amazes me that I've held on for going on three years; that's when things started getting really bad.

    I didn't want to be fused to the sacrum because it seems like the results are all over the place and I do not want to replace my pain with the "broom handle butt" feeling. Plus, the horror of having two surgeries and being cut open front and back is enough to bring back my considerable Post traumatic Stress Disorder from my first two surgeries when I screamed my way through 48 hours in ICU. I still have PTSD thirty years later. However, I was actually beginning to consider the surgery, and I know everyone here will understand that point when you say: "Self, we can't live like this anymore." But now the surgeon I was consulting with has told me that my pain is atypical and that surgery MIGHT help with some of the fatigue and achy pain, but that my chances of relief are between 20-80% and that even if it does help me, say, forty percent, that it still would only help the pain between 20-80%. She would not narrow down the numbers. They are not very good numbers. She said my pain was "atypical" in that I have almost NO leg or radicular pain, just deep achy pain, fatigue, and now, these past three months, HORRIBLE thoracic pain - achy and burning- and neck fatigue and pain. I was told the surgery would not help with thoracic pain, is this correct? I feel like a building with no foundation - I have a solid fusion but literally crumbling underneath. To further complicate things, I did not react well to having metal in my body before, which is why I had a hardware removal. This metal today is similar enough to the Harrington rods that this is a major problem, and that is the surgeon's words. Even if I had the surgery, suffered for two years with being unable to sit and broom handle, and then had another hardware removal, the Peek spacers or whatever they're called would have to stay in, right? And I believe those are made of metal.

    I've now had EVERY type of epidural and spinal injection known to man, all to no effect. Physical therapy in the pool is killing me. I'm living on pain meds, which none of us like to do. This can't go on!

    I'm only 49 and I feel like my life is virtually over. I literally at times can't walk one block. If I could find someone to fuse me ALL from the back (posterior) with NO metal and no spacers (I don't want to be taller as I won't be able to get in and out of my car) then I would do it. But apparently this is not possible?

    If anyone has any ideas, or knows about some other surgery options I don't, I'd be grateful if you would write in.

    Thanks much,

  2. #2
    Join Date
    Jan 2008
    Quote Originally Posted by Tableone View Post
    [...] the Peek spacers or whatever they're called would have to stay in, right? And I believe those are made of metal.
    Wow I am sorry with how much you are dealing with. So unfair.

    Just wanted to say PEEK is a plastic.

    Polyetheretherketone (PEEK) is a ductile, crystalline thermoplast with long-term stability. It serves as a matrix material for composite material implants. Previous studies have shown that PEEK demonstrates a high degree of biocompatability and thus is permissible as a material for medical implants. PEEK possesses an EM comparable to that of bone and thus seems quite suitable for use as an intervertebral implant. Additionally, PEEK distinguishes itself through radiotransparency, high durability, high chemical and thermal resiliency, and favorable friction and wear properties. Because PEEK cages are radiotransparent, they are produced with embedded titanium pins, in order to enable radiological examination of the cage position.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine

    "We are all African."

  3. #3
    Join Date
    Mar 2008
    I'm so sorry you're going through this. i am also facing revision surgery and have had 2nd, 3rd and 4th doubts. However I have a fine surgeon and I would encourage you since you are in Northern Cali to consult a Dr. Gupta in the Sacramento area. I know it's not that close, but it's not that far, either.

    Get other opinions - I consulted 5 surgeons before I had my 1st surgery. I have never heard the term "broomstick butt". Please tell me it isn't what it sounds like?

    Best of luck to you and stay in the group there is so much help and empathy here.

    God Bless.
    XLIF/Posterior Surgery 6/16/08. Fused T10-L5 in CA by Dr. Michael Kropf (don't go there unless it's simple, I hear he's at Cedar's now). Very deformed, had revision w/5 PSO's, rods from T-3 to sacrum including iliac screws, all posterior, 5/23/16 with Dr. Purnendu Gupta of Chicago.

    Owner of Chachi the Chihuahua, So Cal born and bred, now a resident of 'Chicagoland' Illinois. Uh, dislike it here....thank God there was ONE excellent spine surgeon in this area.

  4. #4
    Join Date
    May 2010

    Dr. Gupta

    Hi, I wanted to tell you that you are in my thoughts and prayers! I know what pain is as do many of us on this forum. Also, my surgeon is Dr. Lenke in St. Louis. He is leaving and going to practice in New York. And he told me he was being replaced by a scoli surgeon from California called Dr. Gupta. I wonder if it's the Dr. Gupta that Susan mentioned from Sacrameto. It's sure could be possible. Anyway, I think he will be going to St. Louis soon, as Dr. Lenke is leaving in June. I was told Dr. Gupta an excellent surgeon.
    I also have horrible pain in my neck and it radiates down into my shoulders .it seems to come up from my T/4 area where my rods end. All the way up to my neck and into my shoulders and half way down my arms. Is this kind of what you are feeling in that area. It causes terrible fatigue! I feel for you my dear. I have had shots, injections, physical therapy my injections worked for a couple months. Have you tried chiropractor? I am thinking of doing that next. I an fused from T/4 to my sacrum. I think
    Pp you need that stability.i can't say I don't have any problems. I am bothered they are not quite often by the iliac screws. Mine are quite long and big. I guess the. weight of them and the fact they are so darn I big!!
    I am wishing you the best in your question. I will keep in my prayers my dear. Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

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