Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Hi, RH & Seems we have another thing in common RH. - yes, the PT was most unhelpful, and perhaps even added to the problem! .That is another thing I would add, - be cautious with the PT - try their recommendations ever so gently, and see how you feel. If it feels worse, question the treatment. My PT was a domineering macho type, and I had a terrible time. I know he had no clue as to why I was having problems (no one knew from mito, muscle weakness, etc) Finally the doc said " Use your judgement. " I then experimented on my own, getting info from as many sources as possible, asking for alternative moves/activites, and very carefully picking and choosing. I do recall one twisting session that had me in horrible spinal pain from the waiste up for several days afterwards. I still am careful about not twisting too much. BTW, I should add they also found 2 moderately problematic discs in my thoracic region - T 8 and T11 I believe. The surgery for it is really complex, and I am not even dreaming of having further testing done for it. I can control the pain sufficiently by good posture, muscle work and resting. Most of the time the pain is quite low key, but that also might have added to my complex of issues post-surgery. Again, it is not uncommon for ppl to have more than one bad disc, though, depending on what caused the problem to begin with. Backs are so complicated! Again, wishing you the best of luck and a great recovery, . Sunny > 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 3, 2006 Report Share Posted May 3, 2006 hey I do physical therapy for a liivng! Seriously I am the only one in my department who knows about mito abd thats because I have it. Remember you do have the right to ask for a different therapist if you don't click with the one you have. also I would recommend going to some one who does manual therapy not just exersices. this can help with the spasms to deccrease the pain. susan in michigan z39z@... wrote: Hi, RH & Seems we have another thing in common RH. - yes, the PT was most unhelpful, and perhaps even added to the problem! .That is another thing I would add, - be cautious with the PT - try their recommendations ever so gently, and see how you feel. If it feels worse, question the treatment. My PT was a domineering macho type, and I had a terrible time. I know he had no clue as to why I was having problems (no one knew from mito, muscle weakness, etc) Finally the doc said " Use your judgement. " I then experimented on my own, getting info from as many sources as possible, asking for alternative moves/activites, and very carefully picking and choosing. I do recall one twisting session that had me in horrible spinal pain from the waiste up for several days afterwards. I still am careful about not twisting too much. BTW, I should add they also found 2 moderately problematic discs in my thoracic region - T 8 and T11 I believe. The surgery for it is really complex, and I am not even dreaming of having further testing done for it. I can control the pain sufficiently by good posture, muscle work and resting. Most of the time the pain is quite low key, but that also might have added to my complex of issues post-surgery. Again, it is not uncommon for ppl to have more than one bad disc, though, depending on what caused the problem to begin with. Backs are so complicated! Again, wishing you the best of luck and a great recovery, . Sunny > 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...
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