Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 In June 2009 I had a surgery to untether my spinal cord, I am 51 years old and no one knew I had Spina Bifida or TCS my entire life. After the surgery I developed more problems, numbness in different parts of my body, especially my left leg and foot. I have a lot of pain in my leg and back and it is getting difficult to walk. After three months of physical therapy I went to see a neurologist who ordered an EMG and requested a MRI the next morning. The MRI report shows that there is residuel tethering with the conus tethered dorsally at the mid L3. it also says there is susceptibility artifact which may be related to hemosiderin or possibly metal shavings at surgery area. I am wondering if anyone knows what all this means and if anyone can interpret the meaning of the MRI. I am going to the nuerosurgeon next week and want to be informed when I go into his office. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 Im so sorry you are retethered! I am not a doc or a radiologist so dont take this verbatim but it looks like you retethered (to the back) of the dura, probably due to scar tissue. Unfortunately it is not uncommon. There is a place on your MRI that they are unable to view clearly due to a blurring caused either by an accumulation of iron (from breakdown of blood cells) or by metal shavings but I cannot imagine why there would be metal shavings there. Please let us know what your doc says. Many Blessings, Subject: retethered cord To: tetheredspinalcord Date: Saturday, March 5, 2011, 4:57 PM  In June 2009 I had a surgery to untether my spinal cord, I am 51 years old and no one knew I had Spina Bifida or TCS my entire life. After the surgery I developed more problems, numbness in different parts of my body, especially my left leg and foot. I have a lot of pain in my leg and back and it is getting difficult to walk. After three months of physical therapy I went to see a neurologist who ordered an EMG and requested a MRI the next morning. The MRI report shows that there is residuel tethering with the conus tethered dorsally at the mid L3. it also says there is susceptibility artifact which may be related to hemosiderin or possibly metal shavings at surgery area. I am wondering if anyone knows what all this means and if anyone can interpret the meaning of the MRI. I am going to the nuerosurgeon next week and want to be informed when I go into his office. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 Oops, I meant June 2010 not June 2009. To: tetheredspinalcord From: patriciafischer@... Date: Sat, 5 Mar 2011 22:57:21 +0000 Subject: retethered cord In June 2009 I had a surgery to untether my spinal cord, I am 51 years old and no one knew I had Spina Bifida or TCS my entire life. After the surgery I developed more problems, numbness in different parts of my body, especially my left leg and foot. I have a lot of pain in my leg and back and it is getting difficult to walk. After three months of physical therapy I went to see a neurologist who ordered an EMG and requested a MRI the next morning. The MRI report shows that there is residuel tethering with the conus tethered dorsally at the mid L3. it also says there is susceptibility artifact which may be related to hemosiderin or possibly metal shavings at surgery area. I am wondering if anyone knows what all this means and if anyone can interpret the meaning of the MRI. I am going to the nuerosurgeon next week and want to be informed when I go into his office. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 Similar to you, I started on my TSC journey about 3 years ago, at the age of 52. Was detethered in May of 2008. After the surgery some symptoms improved, like bladder, which by itself made the surgery worth it. But my lower back and leg pain continued as before the surgery. Went back to my NS and he suspected I had disc issues in my lower back that was causing pressure on the sciatic nerve, but nothing very conclusive showed on my MRI. So he had a nerve block done to prove that 2 of my discs were causing problems, and in May of 2009 I had a fusion with hardware at L4/L5, L5/S1. My back and leg have been so much better since, although I have lost some function of the left leg, and continue to work it regularly to regain as much strength as possible. I guess my point is that I think many of us with TSC are not limited to just TSC, but have multiple things going on that can cause the same problems and symptoms. I feel lucky that my NS looked further to try to find a cause for my continuing pain. Now I am also worried that I have retethered after falling down stairs last summer and breaking my shoulder, because my neurogenic bladder is back and my leg is giving me trouble again at night. I had RLS (restless leg syndrome) since I was a teen, and this had disappeared after the fusion, but now is back. I am waiting to hear the results of a new MRI and hoping they don't find anything. I also have cervical problems that could be causing the bladder issue, but I'm doubtful about the leg. Right now I am scheduled to have a cervical decompression (and who knows what else they will do) in a little over a week. I have really hoping this is what is causing my new symptoms; I don't know if I could go through the detethering again. I never dreamed I would be having 3 major surgeries like this! Up until age 52, I had no back problems or any other major health issues. Good luck with your appointment, and hopefully your NS will be open to consideration of all possibilities for the cause of your pain. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 So sorry to hear about the surgery delay. That is so very stressful, although I am quite sure it is better not to have when you are fighting an infection. I had a syrinx prior to my detethering, and it completely collapsed within 6 months after the detethering! So in my case the detethering resulted in some very good things: a normal urodynamics study and the collapse of my syrinx. All the best in getting rid of that infection and dealing with the insurance company very soon. I still have to pass my final clearance for surgery this week and am so nervous that something will go wrong. Once you get the mindset that you are ready to have the surgery, it is completely devastating when it doesn't happen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 Also, I'm not sure an MRI is conclusive on retethering after surgery has already been done. My reports have consistantly said I'm tethered since I had the surgery, but the doctors don't find it to be of any consequence. My last MRI was done with contrast so see if anything had changed, but I'm not even sure that they will be able to tell with that. I've always been told that they go more by symptoms, urodynamics, etc. more than anything else once you have been detethered. I think others on this boards can offer more info on how retethering is determined. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Sounds like your first surgery went well. Why are you having additional surgery? > > So sorry to hear about the surgery delay. That is so very stressful, although I am quite sure it is better not to have when you are fighting an infection. I had a syrinx prior to my detethering, and it completely collapsed within 6 months after the detethering! So in my case the detethering resulted in some very good things: a normal urodynamics study and the collapse of my syrinx. > > All the best in getting rid of that infection and dealing with the insurance company very soon. I still have to pass my final clearance for surgery this week and am so nervous that something will go wrong. Once you get the mindset that you are ready to have the surgery, it is completely devastating when it doesn't happen. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Patty, Sorry for the above post, I had not read this. Where did you have your surgery? Sure hope things go well and finally resolve. > > Similar to you, I started on my TSC journey about 3 years ago, at the age of 52. Was detethered in May of 2008. After the surgery some symptoms improved, like bladder, which by itself made the surgery worth it. But my lower back and leg pain continued as before the surgery. Went back to my NS and he suspected I had disc issues in my lower back that was causing pressure on the sciatic nerve, but nothing very conclusive showed on my MRI. So he had a nerve block done to prove that 2 of my discs were causing problems, and in May of 2009 I had a fusion with hardware at L4/L5, L5/S1. My back and leg have been so much better since, although I have lost some function of the left leg, and continue to work it regularly to regain as much strength as possible. > > I guess my point is that I think many of us with TSC are not limited to just TSC, but have multiple things going on that can cause the same problems and symptoms. I feel lucky that my NS looked further to try to find a cause for my continuing pain. > > Now I am also worried that I have retethered after falling down stairs last summer and breaking my shoulder, because my neurogenic bladder is back and my leg is giving me trouble again at night. I had RLS (restless leg syndrome) since I was a teen, and this had disappeared after the fusion, but now is back. I am waiting to hear the results of a new MRI and hoping they don't find anything. > > I also have cervical problems that could be causing the bladder issue, but I'm doubtful about the leg. Right now I am scheduled to have a cervical decompression (and who knows what else they will do) in a little over a week. I have really hoping this is what is causing my new symptoms; I don't know if I could go through the detethering again. I never dreamed I would be having 3 major surgeries like this! Up until age 52, I had no back problems or any other major health issues. > > Good luck with your appointment, and hopefully your NS will be open to consideration of all possibilities for the cause of your pain. > > Patty > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Hi , I had the detethering surgery at Memorial Hospital in Miami. The surgery was done by a pediatric NS who also works out of Miami Children's Hospital. I first saw Dr. Barth Green, who I have continued treatment with, and he referred me to Dr. Ragheb after consulting with him about my case. Dr. Green did my fusion at the same hospital and will be doing my cervical surgery there as well. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Glad it was rescheduled, I've got a horrible upper and lower respitory infection. On 2nd round of antibiotics, hopefully it will clear quickly. But I'm not sure if i feel worse about being sick or about the continued problems with the insurance company. The insurance has only agreed to pay the neuro the in-plan rate, which isn't enough. Trying another appeal and contacted state insurance. I'm working on a back up plan however. > > > > > > > I was scheduled for tomorrow, but due to a severe respitory infection and > > last minute insurance complications, > > its been postponed. > > > > > > > Quote Link to comment Share on other sites More sharing options...
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