Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hi , I am sorry your daughter is having so much pain. My daughter has not had these complications (most of 's problems are Chiari related). Her t.c. surgeon is Dr. Wehby, she is located in Portland, Oregon. If you are looking for an expert - I have read many good things about Dr. Jerry Oakes in Alabama (at least I think it's Alabama). Best wishes, 's mom (filum release was Jan. 2003) leg pain in 10yr old My daughter had tcs 2yrs ago. It has been downhill ever since. About 4 weeks after surgery she started having what we thought were flu symptoms.After this joint and muscle aches,to the point of not wanting to walk because of the pain. We always wondered if it could be related to the surgery or not. The dr said no way. She is limited in what she can do now becuse her legs ache all the time. It is mostly lower legs. She had an emg in March. they said there is nerve damage in the surgery area but dont want to say it was because of the surgery. They said there is an 'injury there' Well the only thing done in that area was the surgery. The other thing they are saying is maybe there was damage already there because she had a tethered cord. No one thing pointed to tethered cord except she had minor bladder problems which had greatly improved before surgery. We went from a very active child to one now who hurts all the time and really hurts if she is active. She is on 600 mg of neurton for the pain. Has anyone ever heard of these symptoms after tcs? I want to find a dr. who can help her. The Dr. we saw yesterday said she was going to have to live with it and suggested with find a counselor to help her cope!!! That is not acceptable for a 10 yr old. Anyone know of a expert in this field? Thanks for any info anyone has 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 June 16, 2004 Report Share Posted June 16, 2004 Hi , I am so sorry to hear about your daughter's pain. We are just now starting this journey and so far are happy with the outcome of her surgery which was actually only a week ago. We are in Texas, the Dallas Fort Worth Area and our 16 month old daughter had tethered cord release on June 7th. She is already walking so much better and not tripping over her feet. We are happy with everything so far. I don't know where you are located but if Texas is close for you then I am happy to share his name with you. I pray that you can find the right doctor and the right help for your daughter soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Very sorry to here about your daughter's symptoms I have had similar issues after having a detethering operation. The EMG findings that report nerve damage are commonly referred to as rediculopathy. Rediculopathy is sometimes considered a meaningless finding because it is almost always reported after a spinal cord surgery. I myself have had burning, tingling, and stabbing sensations in my legs which spontaneously occured and has stayed with me. This happened 2 years after surgery. From what I have found during my own self-exploration of these symptoms is the following. These pains are related to one of three things, scar tissue formation around the nerves(arachnoitodis) or retethering of the spinal cord(these 2 conditions result from a negative healing process post-operatively, the retethering can be corrected) or 3 an unreported surgical error. What I would do is see an alternative neurosurgeon and would request your preoperative MRI films from the surgeon you saw and get a new MRI for comparison. This way when you see a new Neurosurgeon you won't have to deal with the run around of having a consultation then getting 3 months of testing only to see him again. I recommend Dr. Jallo, in Hopkins. He is one of the best. Jallo, MD Division of Pediatric Neurosurgery s Hopkins Hospital 600 North Wolfe Street, Harvey 811 Baltimore, MD 21287 Tel Fax > My daughter had tcs 2yrs ago. It has been downhill ever since. About > 4 weeks after surgery she started having what we thought were flu > symptoms.After this joint and muscle aches,to the point of not > wanting to walk because of the pain. We always wondered if it could > be related to the surgery or not. The dr said no way. She is limited > in what she can do now becuse her legs ache all the time. It is > mostly lower legs. She had an emg in March. they said there is nerve > damage in the surgery area but dont want to say it was because of the > surgery. They said there is an 'injury there' Well the only thing > done in that area was the surgery. The other thing they are saying is > maybe there was damage already there because she had a tethered cord. > No one thing pointed to tethered cord except she had minor bladder > problems which had greatly improved before surgery. > We went from a very active child to one now who hurts all the time > and really hurts if she is active. She is on 600 mg of neurton for > the pain. > Has anyone ever heard of these symptoms after tcs? > I want to find a dr. who can help her. The Dr. we saw yesterday said > she was going to have to live with it and suggested with find a > counselor to help her cope!!! That is not acceptable for a 10 yr old. > Anyone know of a expert in this field? > Thanks for any info anyone has > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 I'm just now reading this after writing about my decision not to have surgery at Hopkins because I didn't like any of the other peds neuros there! Dr. Carson only gave me two other names, neither of which were Dr. Jallo's, and I just did a little research on Jallo - turns out he now works for the SB clinic I used to attend at Kennedy Krieger Institute. Hopkins was my " medical home " from ages 6-17 and I probably would have considered having the surgery there had I found a doctor I liked -- I wish I had had the chance to at least consult with him. ~Jen | On Mon, 05 Jul 2004 00:56:02 -0000 | " davidbrian232000 " wrote: I recommend Dr. | Jallo, in Hopkins. & nbsp; He is one of the best. | | Jallo, MD | Division of Pediatric Neurosurgery | s Hopkins Hospital | 600 North Wolfe Street, Harvey 811 | Baltimore, MD 21287 | Tel & nbsp; & nbsp; | Fax & nbsp; | | | | & gt; My daughter had tcs 2yrs ago. It has been downhill ever since. | About | & gt; 4 weeks after surgery she started having what we thought were flu | & gt; symptoms.After this joint and muscle aches,to the point of not | & gt; wanting to walk because of the pain. We always wondered if it | could | & gt; be related to the surgery or not. The dr said no way. She is | limited | & gt; in what she can do now becuse her legs ache all the time. It is | & gt; mostly lower legs. She had an emg in March. they said there is | nerve | & gt; damage in the surgery area but dont want to say it was because of | the | & gt; surgery. They said there is an 'injury there' Well the only thing | & gt; done in that area was the surgery. The other thing they are saying | is | & gt; maybe there was damage already there because she had a tethered | cord. | & gt; No one thing pointed to tethered cord except she had minor bladder | & gt; problems which had greatly improved before surgery. | & gt; We went from a very active child to one now who hurts all the time | & gt; and really hurts if she is active. She is on 600 mg of neurton for | & gt; the pain. | & gt; Has anyone ever heard of these symptoms after tcs? | & gt; I want to find a dr. who can help her. The Dr. we saw yesterday | said | & gt; she was going to have to live with it and suggested with find a | & gt; counselor to help her cope!!! That is not acceptable for a 10 yr | old. | & gt; Anyone know of a expert in this field? | & gt; Thanks for any info anyone has | & gt; | | | | | | Not Medical Advice. We Are Not Doctors. | Need help with the list? Email kathy@...,michelle@..., rick@... & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp\ ; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \ nbsp; & nbsp; & nbsp; & nbsp; | | | | | | | | | Quote Link to comment Share on other sites More sharing options...
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