Hello I spent the first year of my life in the hospital with bowel complications. When I was released I still had bowel complication until the age of 11 but was not as severe. After that I started having complication with emptying my bladder and not being able to produce sperm. So when I married me and my wife wanted to have children so I went and seen a doctor for the problems. I was 26 at the time when I found out I had tethered cord syndrom. The doctor told me I needed the surgery right away or my spinal cord would snap and I would me paralized. So the following week he performed the surgery. I never had any pain prior to the surgery but after the 9 and a half hour surgery and 3 weeks in the hospital I ended up a diffrent person. I have severe pain in the back of my left leg that burns in the muscle along with shock pains through out both legs and threw my feet I also have severe pain in my tailbone. And after the surgery I have no feeling in my genatal or rectum area I use a strait cathiter to urinate and use my incontinence training to perform a bowel movement. I no longer work and I just found out after two short years that my cord has retethered and I'm afraid that if I do the surgery again I could end up worse than I am already. Please let me know of any doctor that would be willing to review the OP report because I think there were mistakes made in my first surgery. Please let me know because I was a very athletic person who was working to become a police officer. And now all my dreams were flushed down the drain. I can bareley get out of bed now and I also take many medications for pain. I thought when going in for the surgery I would come out better not 10 times worse please let me know if mistakes when performing the surgery could have been made. Thank you for answer you may be able to give me.
I am sorry to hear how things turned out. Teathered cord syndromes, and the surgeries that go along with them, are complex and can carry post-op neurological problems. Most of these are done by neurosurgeons. I would suggest obtaining a second opinion at an accomplished center such as Barrows or Mayo clinic. Alternatively, you can consider getting an opinion at a major teaching university (neurosurgery spine department) in a city near your location.
From reading your post and what I have learned of TCS over the past 2 yrs, there probably was not any misstakes made during your first surgery. I belong to a group on Yahoo for TCS/LMC (a form of Spina Bifida) and those that ended up having a de-tethering, usually end up having more due to scarring from the previous. Scar tissue is the bodies way for "healing". And if too much scar tissues forms, it therefore causes a re-tether. Some that have had this surgery, go YEARS before symptoms show up again, if ever. Others could end up re-tethered within months of the first surgery. Some have ended up completely paralyzed from the surgeries. So for you to be re-tethered isn't because there may have been a misstake made during the first surgery, but because your body produced more scarring that caused the cord to reattach itself.
If you would like the web address of the Yahoo group, send me a private message and I would be very happy to provide you with it. It is a group mostly comprised of Adults with Children going thru it, but there are also Adults themselves that have gone thru it and totally understand. They are caring and compassionate and from what I have seen, can be more informative and knowledgeable than most doctors you will encounter. Because TCS in Adults is "rare" (per 90% of doctors), very few know anything about it.
I feel your pain and your frustrations. But know you are not alone and there are people that are going thru the same thing as you are and are willing to help with their knowledge, recommendations, knowledge of educated doctors,etc.
God Speed and good luck in your search for answers.
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