Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Judy, I know Boston is great for kids...perhaps also for adults. I would maybe call and ask them. I'm sorry you have gone through such problems with the medical community. I am sure that if you call you can find someone who can lead you in the right direction. Also, maybe others can correct me if I am wrong, but have you tried massage therapy? I know it works wonders for people with fibromyalgia...and if it can help with that...anyway, just a thought. Good luck Elissa JUDY JEROME wrote: Hi, this is Judy. I have asked a few questions in the past, but have always read the emails for information. I live near Albany, NY, (Albany Medical Center) is suppose to be one of the best hositals in the country. I will be as brief as possible and may repeat my symptoms for those new to the site. I was born with hair tuft in a country hospital in 1949. I am sure they had no idea what the hair was about. I was given enemas everyday at the age of 5 and was always yelled at for wetting my pants. I have hammer toes, one leg shorter than the other and am always sick in one way or the other. I had a myelogram 30 years ago for chronic back pain, by the best neurosurgeon in the area. He said nothing was wrong. Had a spinal leak the next day, admitted to the hospital, all he told me was never let anyone touch your spinal cord again. Did not give a reason. I was naive at the time, never asked any questions. I have had bladder, bowel problems all my life, never the right diagnosis. Most doctors did not believe I was in pain. Finally, in 1998 an ortho did an MRI and discovered the tethered cord. I was rushed in the next day for a brain scan, that was okay. I had numerous nerve tests, etc. and finally I was sent to a neurosurgeon. He had never done a de tethereing surgery before, so I was uncomfortable with that. I then found a pediatric neurosurgeon who agreed to do the surgery. My preoperative diagosis was " tethered cord with thickened filum. " Spinal cord low in posistin - conus terminates at L4-5 interspace. Surgery was L5 and S1 bilateral laminectomies, sectioning tethered filum terminae. I also have a cyst in the cord that was not touched. I was pain free for about 9 months. Retested, no idea why pain returned. A few months later MRI showed I had retethered. My pain is intermittent, most of the time down the right leg into the ankle. I have severe leg cramps in both legs. Recently I have developed spinal burning. I has little bowel and bladder control, now I have none at all. I have also developed neck pain and soreness. I don't know whether that is related or not. One doctor had told me nothing above the waist was related to the tethered cord. Of course, I have been accused of making up my pain for medication and I have been ignored, so I do not always believe doctors. I have been to several pain management doctors (one never heard of a tethered spinal cord) Being, they would not perform any procedures, they all dump me after a while. Thankfully, my family doctor will give me darvocet when I need it. I have never taken anything stronger than Lortab 750. My reason for writing is I don't know where to go from here. Because of the new pain and symptoms, has the retethering caused more nerve damage? Should I be worried? Or should I just live with it? I know I am lucky that I am walking and lead a somewhat normal life. I am just afraid of what might be if something is worse than the first time. I have no neurologist or neurosurgeon, no one in the area will touch me. My surgeons told me that would never open me up again, my neurologist, who was great in the beginning, said he cannot do anything for me. I don't know where to turn. Does anyone know of a specialist in this area? New York city, Boston area.. As I said, I am really scared of what might come in the future. Any opinions, help would be greatly appreciated. Thank you, Judy Not Medical Advice. We Are Not Doctors. Need help with the list? Email kathy@...,michelle@..., rick@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Judy,My mane is Moe,I live in Massachussetts.There is a hospital in Burlington Mass. called THE LAHEY CLINIC. LAHEY.ORG. You can go on the web site,put in neuroooologist,or neurosurgeon. It will give you a profile of whatever kind of doctor you need there education the whole bit. I had no bowel or bladder control either.I went to see Dr. Coller. He WAS THE FIRST ONE TO BELIEVE ME !!!! It does not matter what tests you do neuro problems do not show up on bowel and bladder tests.You can even leave an eee-mail you will see where when you get on the site. They will help you . leave a name and number and they will call you back to make an appt. or they will e-mail you with one !!! good luck ,and GOD BLESS !!!! MOE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Judy, I am new to the group and I also have a tethered cord along with Chiari 1 Malformation and a rare spinal arachnoid cyst and have L-5/S-1 herniations,annular tear etc. I too have had no luck in getting treated. I know of a expert that is in miami florida who is very good with alot of spinal disorders and he also does arachnoid cyst surgery's and tethered cords etc. The doctors name is Barth Green. I myself am going to try and see him to help me get my L-5/S-1 area operated on that is causing me to lose feeling in my legs and I also think my tethered cord at T-3/4 could be pulling downward on my entire left side causing me alot more chronic pain in my back cause when I try to stand up or walk,I feel a pull with alot of pain. Feel free to email me back at aeg1211@... thanks, Anne Elissa Mercado wrote: Judy, I know Boston is great for kids...perhaps also for adults. I would maybe call and ask them. I'm sorry you have gone through such problems with the medical community. I am sure that if you call you can find someone who can lead you in the right direction. Also, maybe others can correct me if I am wrong, but have you tried massage therapy? I know it works wonders for people with fibromyalgia...and if it can help with that...anyway, just a thought. Good luck Elissa JUDY JEROME wrote: Hi, this is Judy. I have asked a few questions in the past, but have always read the emails for information. I live near Albany, NY, (Albany Medical Center) is suppose to be one of the best hositals in the country. I will be as brief as possible and may repeat my symptoms for those new to the site. I was born with hair tuft in a country hospital in 1949. I am sure they had no idea what the hair was about. I was given enemas everyday at the age of 5 and was always yelled at for wetting my pants. I have hammer toes, one leg shorter than the other and am always sick in one way or the other. I had a myelogram 30 years ago for chronic back pain, by the best neurosurgeon in the area. He said nothing was wrong. Had a spinal leak the next day, admitted to the hospital, all he told me was never let anyone touch your spinal cord again. Did not give a reason. I was naive at the time, never asked any questions. I have had bladder, bowel problems all my life, never the right diagnosis. Most doctors did not believe I was in pain. Finally, in 1998 an ortho did an MRI and discovered the tethered cord. I was rushed in the next day for a brain scan, that was okay. I had numerous nerve tests, etc. and finally I was sent to a neurosurgeon. He had never done a de tethereing surgery before, so I was uncomfortable with that. I then found a pediatric neurosurgeon who agreed to do the surgery. My preoperative diagosis was " tethered cord with thickened filum. " Spinal cord low in posistin - conus terminates at L4-5 interspace. Surgery was L5 and S1 bilateral laminectomies, sectioning tethered filum terminae. I also have a cyst in the cord that was not touched. I was pain free for about 9 months. Retested, no idea why pain returned. A few months later MRI showed I had retethered. My pain is intermittent, most of the time down the right leg into the ankle. I have severe leg cramps in both legs. Recently I have developed spinal burning. I has little bowel and bladder control, now I have none at all. I have also developed neck pain and soreness. I don't know whether that is related or not. One doctor had told me nothing above the waist was related to the tethered cord. Of course, I have been accused of making up my pain for medication and I have been ignored, so I do not always believe doctors. I have been to several pain management doctors (one never heard of a tethered spinal cord) Being, they would not perform any procedures, they all dump me after a while. Thankfully, my family doctor will give me darvocet when I need it. I have never taken anything stronger than Lortab 750. My reason for writing is I don't know where to go from here. Because of the new pain and symptoms, has the retethering caused more nerve damage? Should I be worried? Or should I just live with it? I know I am lucky that I am walking and lead a somewhat normal life. I am just afraid of what might be if something is worse than the first time. I have no neurologist or neurosurgeon, no one in the area will touch me. My surgeons told me that would never open me up again, my neurologist, who was great in the beginning, said he cannot do anything for me. I don't know where to turn. Does anyone know of a specialist in this area? New York city, Boston area.. As I said, I am really scared of what might come in the future. Any opinions, help would be greatly appreciated. Thank you, Judy Not Medical Advice. We Are Not Doctors. Need help with the list? Email kathy@...,michelle@..., rick@... Quote Link to comment Share on other sites More sharing options...
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