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Forum Name: Neurology Topics

Question: ? about 16 year old with tethered cord / peripheal neuropath


 immot - Thu Nov 13, 2008 1:55 pm

My daughter (16) has been going from Dr. to Dr. since March of this year. She has had 4 MRI's lots of x-ray and been treated and released from a few DR.'s (orthopedist) without finding the reason for her having shooting pain in her legs and arms. We have found that she has a bone cyst in her right leg & tethered cord syndrome. She was scheduled to have surgery to untethered her cord on Nov. 17 but Tuesday the neurosurgeon postponed it and is sending her to a neurologist for more testing. Something about peripheal neuropathy? She has been in pain for so long she is just used to it now. I understand them trying to make sure they are going to cure/ treat her for the right thing but isn't she going to have to have her cord untethered anyways?
To date these are the test she has had: Mri for upper & lower spine, head, lower leg ( to check for bone cancer), she had urodynamics & ultrasound of the kidneys. She has had blood test for rheumatoid arthritis and I don't remember what else. But One orthopedist ran several blood test and put her in two walking boots for a month. after she released her she was in more pain then before. so after school got out I found an orthopedic Dr at Childern's hospital in B'ham, Al. He found that her pain was from her nerves and ordered the MIR of her sciatic nerve. That is how we found she had a lumpoma conus medullaris. He sent her to a neurosurgeon who ran more test and is now sending her to a neurologist. Is this normal?
My undersatnding is that he was only snipping the tethered part but not removing any of the lumpoma. Why wouldn'y you take out as much as you can?

I am so confused please help... Is the neurosurgeon doing things right or are we just waisting time?
 John Kenyon, CNA - Wed Dec 03, 2008 9:45 pm

User avatar Hello -

I'll try and untangle some of the confusion this has caused. First, if your daughter has (or is suspected of having) peripheral neuropathy, the symptoms may have been mistaken for tethered cord syndrome. The syndrome is a cluster of symptoms typical of a certain condition. However, it is not the condition itself, and this may not have been causing the symptoms if peripheral neuropathy from some other cause is present. Of course it's also possible that a tethered cord could cause peripheral neuropathy (in the legs only in this case). It is a little bit of a matter of deduction. If there is a lumpus at the trailing end of the cord then this needs to be dissected. It's almost impossible to totally remove it, and unnecessary, but it does need to be, essentially, sliced up (with great care) to relieve the tension it may be causing on the nerves coming from the end lower end of the cord. However, if the lumpus (fatty deposit) isn't responsible for the symptoms, it might be safely left alone.

The stories you've gotten are a little confusing, for sure, but what's being done sounds like it is normal and appropriate, because if the surgery to remove or dissect the lumpus is unnecessary then it ought not be done. Peripheral neuropathy can often be treated with oral medications. I think you'll know more after the consult with the neurologist, who may perform a nerve conduction test (if that hasn't already been done). When this has happened, please follow up with us and keep us updated.

I hope this is of some help in clearing up the questions. The process does seem "normal" to me. One wants to be certain what is necessary and what is actually causing the symptoms. Best of luck to you and your daughter.
 immot - Sun Dec 21, 2008 5:19 pm

We were able to get into see the neurologist faster. My daughter had been to neurologist about her migraines. She ordered blood work and a nerve conduction study. Everything came back normal and she signed off saying it was Ok to go ahead with the untethering surgery. Her surgery is the morning of Dec. 22 she will stay overnight. and come home the next day. They are not sending her home on a catheter and said that she my not get up for any reason until Thursday morning to make sure she doesn't leak any fluid.. The neurosurgeon said he is very intrigued to see if this procedure will help with any of her problems. I asked the neurologist is she thought she might have early signs of MS or MD and she said no.
 John Kenyon, CNA - Mon Dec 22, 2008 12:02 pm

User avatar Hello and thanks for this update. This is great news, especially if it all pans out as hoped and expected. Also great news about the rule-out of MS and MD. It may be annoying to your daughter to have to stay horizontal til Thurdsay morning, but that will make a big difference and the timing is perfect. If the procedure does help improve any of her symptoms it will be a great gift.

Please keep us updated.
 immot - Sun Dec 28, 2008 7:58 pm

The surgery went as well as could be expected. However we were told that once they he was able to see inside that it wasn't what they had thought he would fine via the MRI. He went ahead and cut a little peace of the filam of as planed but it was normal. He is hoping that it will take enough pressure of the tumor if not he will need to do another surgery in 6 months. He said that he didn't go up and work where the tumor is because he didn't discus that with us and even tho it's physically just inches from where he was it was miles away neurologically. It seam her tumor is attached to several of the nerves off the spinal cord. He said it would take 3-4 mths to see if this worked but he also said she would only be in the hospital overnight ... we were there 5 nights & 6 1/2 days. When she was finally allowed to get up on Christmas she got very sick from a headache. after the medicine for it she slept the most of the rest of the day and all night except for when they came in to cath her. She had to be cathed every 6 hrs or as she asked. the night shift had a hard time with it and changed her nurses every night. The nurse would try twice then they would go get someone else to do it. They day shift were able to cath her the first time. So she has been through a lot for sometime that might not even work. I wish he would have called us while she was in surgery and gone over the information and went ahead with the other operation that he believes will work. That way she wouldn't possibly have to go through all this again.
 John Kenyon, CNA - Tue Dec 30, 2008 11:28 am

User avatar Hello -

I'm sorry to hear things didn't go ideally, but these sorts of surgeries are, in the planning stage at least, an imprecise science. One can never be certain what will actually be found, although most of the time it's close to what's expected. This was close. Hopefully it will be close enough to avoid future surgeries. It's also unfortunate (but not especially rare) that the patient had an uncomfortable recovery. We'll have to hope, now, that she will continue to improve and that there won't be a need for additional surgeries.

Thanks for the update and the good news is that for now, at least, things seem to be much improved. Let's hold on to that and hope it stands up over time.

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