Guest guest Posted March 18, 2011 Report Share Posted March 18, 2011 , Dr Frim told me on stomach and it helped me a lot, esp if you have lower back pain. Subject: Re: New here To: tetheredspinalcord Date: Thursday, March 17, 2011, 6:48 PM Â Might want to have urodynamic testing done to see how much of a problem it is causing and also consult with a pediatric NS. I thought I read that sleeping on side is better position, but with symptoms that does not help me, so I would also like to know the best position to sleep. > > > Hi, > I had an MRI recently, and it might only be because my massage therapist asked to see a copy of it that I read the MRI and saw the last conclusion said that the findings were of a tethered cord (lower lying conus and fatty filum terminale). > My doctor and his nurse never specifically mentioned it to me. I also have degeneration in my spine (in my neck which showed up in xray) and changes in L3-L5. > > The TC really explains my urinary frequency/urgency and some problems with incontinence that I've experienced, as well as the random pain and weakness in my legs that I experience. > > I brought up to my doctor that the TC was never mentioned to me and he more or less interrupted me and said that when he looks at an MRI, it's his job to determine if I am a surgical candidate or not. I do recall him saying that people in my situation can often end up worse after surgery, and I suppose from what I've read in some places online that that can be the case with TC release, if that is what he meant. > > Why would he not feel the need to tell me about the TC? did he think I was better off not knowing if there was nothing he could do? > > I am having a cortisone injection in my lumbar area next week. I guess this is for the degeneration/inflammation that I have. > Is there anything else you would suggest that I do, or ask for? > > Is it true that bending at the waist and flexing and extending my neck are pulling on my cord each time and damaging it? Are there certain movements you try to avoid? What about sleeping, is there a way you position yourself to limit stretching the cord? any more suggestions? > > thank you > Margaret > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2011 Report Share Posted March 18, 2011 For me its the one that doesnt hurt that night  Subject: Re: New here To: tetheredspinalcord Date: Thursday, March 17, 2011, 6:48 PM  Might want to have urodynamic testing done to see how much of a problem it is causing and also consult with a pediatric NS. I thought I read that sleeping on side is better position, but with symptoms that does not help me, so I would also like to know the best position to sleep. > > > Hi, > I had an MRI recently, and it might only be because my massage therapist asked to see a copy of it that I read the MRI and saw the last conclusion said that the findings were of a tethered cord (lower lying conus and fatty filum terminale). > My doctor and his nurse never specifically mentioned it to me. I also have degeneration in my spine (in my neck which showed up in xray) and changes in L3-L5. > > The TC really explains my urinary frequency/urgency and some problems with incontinence that I've experienced, as well as the random pain and weakness in my legs that I experience. > > I brought up to my doctor that the TC was never mentioned to me and he more or less interrupted me and said that when he looks at an MRI, it's his job to determine if I am a surgical candidate or not. I do recall him saying that people in my situation can often end up worse after surgery, and I suppose from what I've read in some places online that that can be the case with TC release, if that is what he meant. > > Why would he not feel the need to tell me about the TC? did he think I was better off not knowing if there was nothing he could do? > > I am having a cortisone injection in my lumbar area next week. I guess this is for the degeneration/inflammation that I have. > Is there anything else you would suggest that I do, or ask for? > > Is it true that bending at the waist and flexing and extending my neck are pulling on my cord each time and damaging it? Are there certain movements you try to avoid? What about sleeping, is there a way you position yourself to limit stretching the cord? any more suggestions? > > thank you > Margaret > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 , How I wish my sympathetic nerve blocks helped my neuropathy. I heard about them from someone on the list and talked to my physiatrist about them and he agreed that the blocks would be great to try. He does a " test " injection with a small amount to see if it actually helps before doing the full injection. Fortunately for me, he did the test injection and not the full one first b/c it did make my symptoms worse (not a lot, but did get worse) and unfortunately for me, it didn't give me the relief I was praying for. For now, I'm stuck with meds. We were trying to find some answer that would help me come off the meds. And none of the neuropathy meds work. The only one that kind of helped was Cymbalta - and that is just too expensive. Unfortunately, I've started experiencing new symptoms - increased neuropathy and spasticity - couple that with the increased bladder pressures and hydronephrosis I developed over the summer, and I'm very frightened that I have developed another symptomatic retether or my syrinx is back (I had similar symptoms with the first syrinx, except that I had very rapid neuro decline - but I wouldn't notice that now since the last surgery paralyzed me). His office is going to call me with my MRI appointment in the next few days, so I should be able to have my MRI next week and have the results in 2-3 days after that. *nervous* I wish there was an injection that could rid me of my neuropathy. Jenn On Tue, Mar 22, 2011 at 11:30 PM, hollygolightly1916 wrote: > I have to say though, the only thing that's truly helped quell my > neuropathy were sympathetic nerve blocks - one to either side of my spine -- > but each procedure was done separately -- about 8 weeks apart. I started > with pain medication treatment first and then worked up to the injections. > > > Good luck! -- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 Oh no Jenn! So sorry to hear that you are having more problems, hope you arent retethered. I hear you about the neuropathy, mine has been crazy this week after overdoing last weekend on a fundraiser > I have to say though, the only thing that's truly helped quell my > neuropathy were sympathetic nerve blocks - one to either side of my spine -- > but each procedure was done separately -- about 8 weeks apart. I started > with pain medication treatment first and then worked up to the injections. > > > Good luck! -- > > Quote Link to comment Share on other sites More sharing options...
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