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Tethered spinal cord
I am a 50 yr old woman who had a tethered spinal cord repair in 2006. After the surgery I am experiencing pain in my left leg from the hip down to the lower leg. My MD says my meyleon sheething was damaged. Wlll this ever go away? I also have intense leg cramps at night.
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Hi,
I just found this website and read your post with great interest. I am a 50 yr old female just diagnosed with TC two weeks ago. I am still in shock. Had sciatica (pulsating pain in left foot - little/no back pain) for the past 8 yrs at least. Will be seeing several surgeons in the next couple of months.I live in the Washington DC area so I want to see a surgeon at Johns Hopkins. Have had many medical issues in the past but this TC diagnosis was a shock. You mentioned the recovery was tough. How long did you have to stay in bed w/out getting out? I assume you must lay on your stomach? Appreciate any details you feel like sharing. Thank you very much.
Stacy
I just found this website and read your post with great interest. I am a 50 yr old female just diagnosed with TC two weeks ago. I am still in shock. Had sciatica (pulsating pain in left foot - little/no back pain) for the past 8 yrs at least. Will be seeing several surgeons in the next couple of months.I live in the Washington DC area so I want to see a surgeon at Johns Hopkins. Have had many medical issues in the past but this TC diagnosis was a shock. You mentioned the recovery was tough. How long did you have to stay in bed w/out getting out? I assume you must lay on your stomach? Appreciate any details you feel like sharing. Thank you very much.
Stacy
I am a 45 yr female, that had not had any back pain until one day while moving a patient. Now I have terrible back pain from the waist down along with burning. Neurosurgeon diagnosed me with TC and now I am trying to get someone to pay, my workers comp states it's congenital and health insurance states it's because of the injury. I am on light duty but have a hard time even doing that. Does anyone have any suggestions for me.
Hello Purple38,
My story may be somewhat similar to yours. In October 2010, just before turning 58 and after experiencing symptoms like yours, along with bladder issues, several falls, leg numbness and swelling, a radiologist read my MRI, immediately phoned my neurologist and she called me. She is a respected suburban practicing neurologist that I had seen for several years. When she told me that I was her first case ever of tethered cord, I knew I had to get out of the suburbs and to the Texas Medical Center to a neurosurgeon who treats tethered cord and spinal cord lipomas regularly. I had surgery the next week. It is a tough surgery and tough recovery
As one patient to another, you are going to have to seek out your own neurosurgeon who specializes in tethered cord release, and they practice at large, teaching hospitals connected to medical schools. You can go online and find a neurosurgeon who does this or contact your nearest large medical center's dept of neurosurgery and take your disk of your MRI with you, as well as the radiologist's report. If I had been diagnosed a year earlier and had the surgery then, my symptoms would not be as severe as now. Most of my symptoms improved with surgery, but there was damage to some nerves at the spinal cord that, I am told, will not heal, though I am still searching for ways to improve those areas, as well.
Also, prior to surgery, I would discuss with my neurosurgeon orders for physical and occupational therapy to begin as soon as possible and continue with the therapy as long as you possibly can.
Finally, you will want to arrange for round the clock care following your hospital release. I needed help for at least three weeks and your help needs to be someone who can help you up and down and with walking.
Good luck and don't mess around with this or with local, surburban surgeons, because they don't see enough of these cases. I had recognized neurosurgeons, neurologists and orthopedic MDs overlook my obvious symptoms present since birth.
My story may be somewhat similar to yours. In October 2010, just before turning 58 and after experiencing symptoms like yours, along with bladder issues, several falls, leg numbness and swelling, a radiologist read my MRI, immediately phoned my neurologist and she called me. She is a respected suburban practicing neurologist that I had seen for several years. When she told me that I was her first case ever of tethered cord, I knew I had to get out of the suburbs and to the Texas Medical Center to a neurosurgeon who treats tethered cord and spinal cord lipomas regularly. I had surgery the next week. It is a tough surgery and tough recovery
As one patient to another, you are going to have to seek out your own neurosurgeon who specializes in tethered cord release, and they practice at large, teaching hospitals connected to medical schools. You can go online and find a neurosurgeon who does this or contact your nearest large medical center's dept of neurosurgery and take your disk of your MRI with you, as well as the radiologist's report. If I had been diagnosed a year earlier and had the surgery then, my symptoms would not be as severe as now. Most of my symptoms improved with surgery, but there was damage to some nerves at the spinal cord that, I am told, will not heal, though I am still searching for ways to improve those areas, as well.
Also, prior to surgery, I would discuss with my neurosurgeon orders for physical and occupational therapy to begin as soon as possible and continue with the therapy as long as you possibly can.
Finally, you will want to arrange for round the clock care following your hospital release. I needed help for at least three weeks and your help needs to be someone who can help you up and down and with walking.
Good luck and don't mess around with this or with local, surburban surgeons, because they don't see enough of these cases. I had recognized neurosurgeons, neurologists and orthopedic MDs overlook my obvious symptoms present since birth.
Just wanting to check to see if you had the TC surgery and how you are doing. I was recently diagnosed with TC in May 2012. I currently experience numb feet, low back and hip pain. I cannot walk on hard surfaces like the mall, farmers markets, etc. The one neurosurgeon I saw gave me a prescription of Lyrica that seems to help a little. It is hard to find a doctor to help with this as it is not typical in adults. Please let me know how you are and what you have done! Hope you are doing well and feeling much better! This is not fun!
Hi...we do have a Chiari forum here on MedHelp and Tethered cord is a related condition.Several of us with chiari do have TC as well. Having surgery is a last resort for me, as I know the possibility of needing a redo is possible since scar tissue can cause the cord to re-tether.
http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc
I hope u join us in the Chiari forum.
"selma"
I was diagnosed in '07 with tethered cord in '07. I haven't gone back for the surgery but think I'm going to have to bite the bullet and go ahead with it soon. Can anyone tell me what I could expect in the future, if I opted to not have surgery to correct this condition.
I am 71 and just found out 2 years ago, that I have a TC, this was after I took a fall and tore my rotator cuff. It has advance very fast, I now have it affecting my colon and badder, Both have been tested and confirmed it is the TC. I have acute pain in my back no one can touch the area from a little above the waist down to the bottom of my torso, with out major pain, I have to wear the patches to numb it to make it through the day. If touched my knees buckle, I've had this for years, but it's gotten worse since the fall. I am an active person, have my own business, and can't wait to get back to it, haven't been able to do much with it, since the fall, my arms and legs tingle and go numb, have headaches, I'm in PT right now, and it seems to bother my legs more, I wake up with charley horses, and they hurt day and night, I do have RLS, but this is a different pain, much worse, the med's they have me on the the RLS don't help this and it did before, I started the PT, I've also just developed pain in by digestive area on the left side, I have a problem with gurg, and this is in that area, but no gurg, just pain, one day at PT, one of the exercises had me using a ball, and rolling over on it, and I felt the pain in there, and it's been hurting since then. The doc is talking maybe surgery, mainly because of the pain, what are the risks? Also what can happen if I don't have the surgery? I don't want to end up in a wheel chair, but with the way it's advancing, I'm about willing to do anything to get me better, I hate the way it's changed my life, Any input would be of great help for me, I see the doc May 12 th and want to be prepared to anything he may tell me. sure. Help me please. I want to get back to my life, or prepare for what ever can come my way. Thanks in advance.
Hi,
I see you posted your question way back in '07, are you doing better?
I am 53 and have a tethered cord which has been creating increasing difficulties for me. I am seriously considering this surgery and am trying to find an experienced surgeon in CT.
I am hoping you are feeling better these days
I see you posted your question way back in '07, are you doing better?
I am 53 and have a tethered cord which has been creating increasing difficulties for me. I am seriously considering this surgery and am trying to find an experienced surgeon in CT.
I am hoping you are feeling better these days
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