Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Dear , I add my concerns about the cervical fusion voiced. I had a fusion several years before my mito diagnosis. All the neurological signs, pain, indicated a collapsing disc, even the radiologist commented that there were changes in the disc space. I should have had a second opinion. The surgery was no big deal. Done at Stanford, no pain afterwards but no improvement in my clinical condition. Not until I started seeing the neuro who diagnosed my MEL:AS was there any doubt about the surgery. He voiced a concern that the change at C4-5 was not sufficient to justify surgery. He then went on to explain why my pain, muscle weakness, failure to show any improvement continued. All of this signs were due to the MELAS and not the disc. I felt at the time that I was receiving good care. Now I know differently. Get a second opinion, someone who is not is the same clinic/practice. I know it takes extra time but it is worth the effort. " When your only tool is a hammer, everything looks like a nail. " a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Yeah, I guess the big thing is - you have mito, and any surgery is a big surgery. I did not have mito symptoms at the time - in fact, there is some research that says spinal surgery can cause autoimmune disease, a fact that I think about often (as my symptoms improved greatly during my pregnancies, an indication there might be an immune component to my mito disease). However, I didn't find physical therapy to work for me, in fact I think it made my back worse. As I said before, my biggest help since my back surgery has been sulfur supplementation. I take Source Naturals 750 mg Methyl Sulfonyl Methane (with Molybdenum) once a day, and that keeps my (severe) arthritis pain under control. You might want to read up on that supplement, I did a lot and took it during all of my last pregnancy and while nursing (it is VERY safe according to the articles I've seen). Again, I'm not a medical doctor, but it's pretty important to my life, as much as the NADH that helps my mito symptoms. I'd be pretty much non-functional, full disability without those supplements, YMMV. Take care, RH > > Dear , > > I add my concerns about the cervical fusion voiced. I had a fusion > several years before my mito diagnosis. All the neurological signs, pain, > indicated a collapsing disc, even the radiologist commented that there were > changes in the disc space. I should have had a second opinion. > > The surgery was no big deal. Done at Stanford, no pain afterwards but no > improvement in my clinical condition. Not until I started seeing the neuro who > diagnosed my MEL:AS was there any doubt about the surgery. He voiced a > concern that the change at C4-5 was not sufficient to justify surgery. He then > went on to explain why my pain, muscle weakness, failure to show any > improvement continued. All of this signs were due to the MELAS and not the disc. I > felt at the time that I was receiving good care. Now I know differently. > > Get a second opinion, someone who is not is the same clinic/practice. I > know it takes extra time but it is worth the effort. " When your only tool is a > hammer, everything looks like a nail. " > > a > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 I guess I am lucky when it comes to PT! I have had the same fantastic therapist who has a Dr. in PT. for 3 yrs now and even when I started and I was his first Mito patient ;he took the time to learn all he could about what kind of specialized care I might need. He also gives my PCP weekly calls or meets him personallly to discuss my care (I am lucky that they are 4 doors apart in the same complex!). I think the PT has definetly kept my Mito from progressing more rapidly. I guess I am one of the lucky ones who has benefited from this form of treatment----as well know very well----each one of us is so totally different from the next! In my own family with both my boys and myself we all present with different symptoms and even the ones that are the same the degree of the symptoms vary significantly. Thanks for all your help and input-it is always so great to know that you are all here so willing to lend support and information! > > > > > > Dear , > > > > > > I add my concerns about the cervical fusion voiced. I had > > a fusion > > > several years before my mito diagnosis. All the neurological > > signs, pain, > > > indicated a collapsing disc, even the radiologist commented that > > there were > > > changes in the disc space. I should have had a second opinion. > > > > > > The surgery was no big deal. Done at Stanford, no pain afterwards > > but no > > > improvement in my clinical condition. Not until I started seeing > > the neuro who > > > diagnosed my MEL:AS was there any doubt about the surgery. He > > voiced a > > > concern that the change at C4-5 was not sufficient to justify > > surgery. He then > > > went on to explain why my pain, muscle weakness, failure to show > > any > > > improvement continued. All of this signs were due to the MELAS > > and not the disc. I > > > felt at the time that I was receiving good care.  Now I know > > differently. > > > > > > Get a second opinion, someone who is not is the same > > clinic/practice.  I > > > know it takes extra time but it is worth the effort. " When your > > only tool is a > > > hammer, everything looks like a nail. " > > > > > > a > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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