Guest guest Posted February 26, 2011 Report Share Posted February 26, 2011 Hi Sue -- sounds like your tc is different than mine -- due to the scara tissue from your original surgery. I had a tight/fatty filum. I had surgery almost 3 years ago for the TC (at age 42) and just had a spinal fusion last summer for spondylolisthesis. It is quite normal for people to make it to " middle age " without any major symptoms. I have had problems since the age of 18 but not diagnosed till my late 30's with the TC. Everyone's recovery seems different from this surgery but it can be quite an ordeal. I was in hospital for 5 days I think and the first few days were really rough for me but we've now figured out that half of my battle is the morphine. I would strongly urge you to have a family member or friend with you as much as possible the first 2-3 days, until you are mobile. Generally you will be on complete bed rest for at least 24 hours, every NS is a bit different in their protocal. I think I was down til day 3 as I was having such bad dizziness and headaches. Once you can get up and walking and sitting the pain will get so much better, and you will begin to feel so much better ase well. Usually, as soon as you can walk on your own (with or without a walker) and navigate the stairs, have b & b working again, then you are free to go home. I also strongly suggest you have someone at home with you for at least the first week -- you will need them to get you meals, help with showering, dressing, etc. Make sure you have your house in order, things up high as you will not be bending, some frozen meals, etc. I'm sure you've been told to get a shower seat (which I never used), raised toilet seat, reacher/grapper (the best invention ever!). Make sure to do exactly as you are told after surgery -- you need to be walking but don't do too much, as there is a risk of a spinal leak after this surgery which you would like to try and avoid! (I had a leak about day 7). If you have any other questions feel free to email me. You will be glad to get the surgery overwith rather than worrying about it. Dee To: tetheredspinalcord From: sueradz@... Date: Sat, 26 Feb 2011 17:36:34 +0000 Subject: Re: new symptoms Dee, I'm kinda new to this group, but I'm scheduled for surgery for tsc in early march. Neuro said its scar tissue from my original surgery as a newborn. Made it just over 40 years with no problems, but its been a rough year with quite a bit of deterioration. How long ago did you have your surgery? What was the initial recovery like for you? Sent from my Verizon Wireless BlackBerry new symptoms To: tetheredspinalcord Date: Saturday, February 26, 2011, 4:28 AM Hi, I had my dethethering in June 2010 and was feeling pretty good in the beginning. I recently went to a neurologist for pain, numbness, and weakness in my left leg. My bladder will not function either. He scheduled an EMG and once completed he ordered an MRI the next day. He didn't say much other than it may be my nerves degenerating from the cord being tethered for 50 years or it could be something which requires more surgery. Just wondering if anyone else has had this experience after TC surgery. I am taking Lyrica for pain and it seems to help although it makes me really tired. I have been telling people since around October that something felt strange with my leg, everyone from my doctor to my physical therapist. Couldn't get anyone to listen until this new doctor. They all just kept telling me that it was my nerves trying to heal. Any information would be greatly appreciated. Thanks!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Thats true too. After my latest nerve decompression surgery I was doing AWESOME until the 3-4 month mark and then WHAM. I am told it is the nerves waking up and regenerating. However, my pain increased but I did not experience neuro decline. Subject: new symptoms To: tetheredspinalcord Date: Saturday, February 26, 2011, 4:28 AM Hi, I had my dethethering in June 2010 and was feeling pretty good in the beginning. I recently went to a neurologist for pain, numbness, and weakness in my left leg. My bladder will not function either. He scheduled an EMG and once completed he ordered an MRI the next day. He didn't say much other than it may be my nerves degenerating from the cord being tethered for 50 years or it could be something which requires more surgery. Just wondering if anyone else has had this experience after TC surgery. I am taking Lyrica for pain and it seems to help although it makes me really tired. I have been telling people since around October that something felt strange with my leg, everyone from my doctor to my physical therapist. Couldn't get anyone to listen until this new doctor. They all just kept telling me that it was my nerves trying to heal. Any information would be greatly appreciated. Thanks!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Hi, It has now been 3 years since my detether op aged 48 and my left leg stiffness and numb feeling continues to get worse - bottom is numb at times and right foot now numb. My N'S says there is evidence of scar tissue but states that more surgical intervention will probably not help. I am on 450mg/day which helps and have some reasonable days and then bad days for no apparent reason. My question is simple - what is the solution to scar tissue causing pain and decline? Is the only answer to have another detether and hope for the best- that's if you can face the risk and find a NS to do op - think difficult in UK All best to all on this site Barry Sent from my iPhone > Thats true too. After my latest nerve decompression surgery I was doing AWESOME until the 3-4 month mark and then WHAM. I am told it is the nerves waking up and regenerating. However, my pain increased but I did not experience neuro decline. > > > > > Subject: new symptoms > To: tetheredspinalcord > Date: Saturday, February 26, 2011, 4:28 AM > > Hi, > > I had my dethethering in June 2010 and was feeling pretty good in the beginning. I recently went to a neurologist for pain, numbness, and weakness in my left leg. My bladder will not function either. He scheduled an EMG and once completed he ordered an MRI the next day. He didn't say much other than it may be my nerves degenerating from the cord being tethered for 50 years or it could be something which requires more surgery. Just wondering if anyone else has had this experience after TC surgery. I am taking Lyrica for pain and it seems to help although it makes me really tired. I have been telling people since around October that something felt strange with my leg, everyone from my doctor to my physical therapist. Couldn't get anyone to listen until this new doctor. They all just kept telling me that it was my nerves trying to heal. Any information would be greatly appreciated. Thanks!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 Barry, that is the million dollar question. If we could just find something to fix or prevent the scar tissue then we wouldnt have all these retethers and compromised nerves. Your surgeon is right, more surgery will most likely cause more scar tissue. So what to do??? I think anything we can do that is non-invasive is best. I know some people have tried the new laser treatments that are supposed to help with scar tissue. There are some natural products that are supposed to help breakdown scar tissue as well. I dont know if anyone has had any luck with any of them. I just started taking MSM primarily for pain but I hear that it is supposed to help break down scar tissue and has helped many burn patients with their horrible scars. Will see. > > > Subject: new symptoms > To: tetheredspinalcord > Date: Saturday, February 26, 2011, 4:28 AM > > Hi, > > I had my dethethering in June 2010 and was feeling pretty good in the beginning. I recently went to a neurologist for pain, numbness, and weakness in my left leg. My bladder will not function either. He scheduled an EMG and once completed he ordered an MRI the next day. He didn't say much other than it may be my nerves degenerating from the cord being tethered for 50 years or it could be something which requires more surgery. Just wondering if anyone else has had this experience after TC surgery. I am taking Lyrica for pain and it seems to help although it makes me really tired. I have been telling people since around October that something felt strange with my leg, everyone from my doctor to my physical therapist. Couldn't get anyone to listen until this new doctor. They all just kept telling me that it was my nerves trying to heal. Any information would be greatly appreciated. Thanks!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2011 Report Share Posted February 27, 2011 - I have been using low level laser therapy since 7 months post-op for my TC surgery. I have a professional home unit from http://bioflexlaser.com/ Yes, it is suppose to help with scar tissue - and healing, and inflammation, etc. All I know is I was in really bad shape before I started using mine and noticed marked improvements after 1-2 months of regular use. I started using it right after my fusion surgery and I have had a speedier recovery than after my detether. The laser? Who knows for sure. But since I invested in it I use it. There are many professionals out there using different types of lasers. I do know the physician at Meditech told me I would need extensive treatment so don't let anyone tell you they can fix you in 12 sessions with laser therapy (like they can with some acute injuries). I also take MSM -- I take it as I am doing chelation therapy for heavy metals -- maybe it's helping with my scar tissue and pain too! Dee To: tetheredspinalcord From: livedream_believe@... Date: Sun, 27 Feb 2011 13:32:01 -0800 Subject: Re: new symptoms Barry, that is the million dollar question. If we could just find something to fix or prevent the scar tissue then we wouldnt have all these retethers and compromised nerves. Your surgeon is right, more surgery will most likely cause more scar tissue. So what to do??? I think anything we can do that is non-invasive is best. I know some people have tried the new laser treatments that are supposed to help with scar tissue. There are some natural products that are supposed to help breakdown scar tissue as well. I dont know if anyone has had any luck with any of them. I just started taking MSM primarily for pain but I hear that it is supposed to help break down scar tissue and has helped many burn patients with their horrible scars. Will see. > > > Subject: new symptoms > To: tetheredspinalcord > Date: Saturday, February 26, 2011, 4:28 AM > > Hi, > > I had my dethethering in June 2010 and was feeling pretty good in the beginning. I recently went to a neurologist for pain, numbness, and weakness in my left leg. My bladder will not function either. He scheduled an EMG and once completed he ordered an MRI the next day. He didn't say much other than it may be my nerves degenerating from the cord being tethered for 50 years or it could be something which requires more surgery. Just wondering if anyone else has had this experience after TC surgery. I am taking Lyrica for pain and it seems to help although it makes me really tired. I have been telling people since around October that something felt strange with my leg, everyone from my doctor to my physical therapist. Couldn't get anyone to listen until this new doctor. They all just kept telling me that it was my nerves trying to heal. Any information would be greatly appreciated. Thanks!! > > Quote Link to comment Share on other sites More sharing options...
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