NY neurosurgeons, regular procedure and Cine MRI

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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NY neurosurgeons, regular procedure and Cine MRI

Postby gue29291 » Tue Oct 30, 2007 10:33 pm

I would like to ask 2 questions. Does anyone have experience with surgeons located in NYC or long island that they could share with me. My daughter is 6 years old and was just dignosed w/ Chiari and a syrinx by Dr. David Harter at NYU. She was referred to him because her orthopedist had an MRI done due to problems she has w/ her cervial vertebare and found the Chiari and syrinx. So far Nicole has no symptoms so this came as a shock. Any advice on other surgeons as a second opinion would be great. I have heard of Dr. Souweidane from Cornell, do you think he would look at her initial MRI and give me some feedback?
Dr Harter has ordered an MRI of the brain and entire spine with and without gado along with a CT scan of the skull base and cervical spine. I spoke w/ Schneider's children's hospital today and they will be doing the MRI next month using sedation and it will take 2 appointments on separate days. I still have to schedule the CT scan. Does this sound like the usual procedure? He has not ordered a CINE MRI which I will question but does anyone know why he would not at this point before I ask?
Thanks for any and all advice!
Ginny (Mom to Nicole) :?:
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Postby brianfsmom » Wed Oct 31, 2007 5:47 am

Hi Ginny

Sorry you have to go through this. My son was 9 when he was diagnosed and he was able to do the MRIs without sedation. He has never had the brain and the entire spine on the same day, but mainly because they haven't been ordered that way. Sometimes they like to schedule children on separate days because each test takes a long time. Perhaps they don't want her sedated for two hours for scans?

Someone else might know better. Did you ask what the procedure would be at NYU?We never had a CINE MRI done either. I guess they were pretty surethe CSF was blocked due to the presence of the chiari and syrinx on the MRI.

Is Dr. Harter a neurologist? Neurosurgeon? Orthopedic? We saw Wisoff at NYU but I don't know the name Harter. (edit: I was curious and googled, I see he joined the group in 2005, we were there in January of that year, must have just missed him)

We ended up having the surgery with Souweidane. He is a very nice man, but he's also very busy. He works out of Sloan-Kettering and Cornell. I know of course he will be happy to give you a second opinion, just not sure if he will do it without an appointment. When I first contacted him, he ended up calling me at home on a Saturday and we spoke for half an hour. He was very comforting to talk to, and I did make an appointment and went in to see him.Good luck with it all. This is really no fun.

You can also consider Feldstein at NYU, he has a different approach to the surgery, and there's a Dr. Abbott at Montefiore. We saw four surgeons before choosing one.
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Postby gue29291 » Wed Oct 31, 2007 12:21 pm

Thanks so much for the reply. Before Nicole does have any surgery we will certainly get at least one more opinion. Right now Dr. Harter has not given us an answer if Chiari surgery should be done, he wants to see the results of the tests he ordered which I spent all day so far setting up at Long Island Jewish hospital. I think we will wait until I have those done and then see what Harter says and then seek some more opinions. If you don't mind me asking did youir son have symtoms related to the Chiari because right now Nicole has no symtoms the syrinx and Chiari were discovered only because she has cervical spine issues and the ortho ordered an MRI. Also, how did you finally make a decision on what surgeon to use? I appreciate anything else you can tell me. Did you consider going to the Chiari institute on Long Island by any chance? Thanks to you and anyone else who would like to reply.
Ginny
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Postby okaydorothy » Wed Oct 31, 2007 2:50 pm

We also see Dr. Souweidene ; we live on Long island and he was recommended by a few people I know. I like him a lot.

Kirk has had the cini mri and will ahve a mri on monday. He is 7 and still gets sedated for them.

good luck
dorothy
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Postby brianfsmom » Wed Oct 31, 2007 4:20 pm

Dorothy: Good luck on Kirk's MRI. Please let us know how it goes and what you find out. I hope all will be stable.

Ginny: By all means don't make a decision at all until you have all the facts and all the opinions! My son's chiari and syrinx were found by an astute neurologist. The symptoms were so vague that a year later, when he had a student trailing him, he couldn't remember why he had sent Brian for the initial MRI.

I, however, do remember why :roll: ... I had brought him in because he always had a slight hand tremor and now he was falling behind in school because of his fine motor skills. During the exam, he told the doctor that his hands were numb a bit every day. Then the doctor found on exam that he had spasticity in his legs and abnormal reflexes, including ankle clonus. He wasn't sure that anything was wrong, but sent us for the MRI - at the time just the cervical spine and brain.

Brian never had headaches or anything like that - he did have leg pain behind his knees (after running and climbing) for years, but the doctor didn't worry about it too much and I never even connected it until after diagnosis. Same with his slight lack of coordination and strength.

After these came back and showed syrinx in the thoracic spine as well, we had to have the whole spine redone with the contrast. We didn't have to redo the brain at that time, though, the original films were enough.

The main reason we went with Dr. Souweidane - besides that he is very nice and very easy to feel comfortable with - was because he was the only surgeon we met with who used the autologous graft material for the duraplasty. We really agonized over the decision and even almost went with another doctor. I guess we will never know the outcome had we gone with one of the others, but so far ::knock wood:: we are pleased with the outcome we have. It is very difficult to decide which of these people - all of whom were way smarter than we are - was right for us.

We considered TCI briefly at first. I got their paperwork and then went to the surgeons our neurologist recommended. We ended up doing what we felt was right for us and for our son. Since I have never been to TCI, I can't really comment. I wouldn't rule out going there if a problem arose. It just was not the route we wanted to take at the time.

I hope this helps you somewhat. Feel free to send me a PM if you would like.
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Postby okaydorothy » Wed Oct 31, 2007 6:39 pm

Hi Jane
The reason why Kirk is going on Monday is because almost weekly he is in the nurses office with headaches. Sometimes three times a week. But not just that ; he has been moaning for a while now that after he drinks he feels like throwing up ; everytime he drinks ; same with milk or water. He also is hot all the time ; no fever, he jsut says he is hot.

Tonight he was the child that after a half a block trick or treating, he said he had enough candy and sat on the grass. This is a kid who LOVES chocolate and candy.

So initially we had an appt for friday, but it was rescheduled for Monday. I think Kirk is just tired of feeling crappy. His teacher and I believe other children also dont understand what he is saying ; he did have speech therapy but was released and the school board wont qualify him for anymore. His cognative is very very good(way ahead of Rory), but Kirk also has a damaged vocal chord which gives him a high pitched voice.

So we will see what Dr. S says in December. I am so glad that Brian is doing so well. How is your daughter doing?
Love
dorothy
okaydorothy
 

Postby brianfsmom » Thu Nov 01, 2007 5:37 am

Hi Dorothy

Aww, poor Kirk. That is not fun. So which doctor sent him for the MRI, then? Dr. S? When do you get results?

My daughter is doing well, thanks :-) She started high school and is having a grand ole time.
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Postby okaydorothy » Thu Nov 01, 2007 3:30 pm

Jane ; I decided to have the MRI for Kirk. Luckily with our insurance, we do not need referrals so its been over a year since he had his last one.

Hopefully I am just a worry wart of a mum ; I would rather be this way than leave it alone.

High school ; wow ; thats scary.

Love
dorothy
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Postby willsmom » Fri Nov 02, 2007 8:53 am

I can't speak about NY docs but I can address the MRIs, etc.

My 14-yea-old son has minor symptoms of some vague numbness, tingling, etc. on his right side. Was diagnosed with scapular winging. Did physical therapy, got better, but when football started up again, the symptoms got worse. Orthopedic ordered cervical MRI and scapular MRI. That is when CM and syrinx were discovered.

NS ordered complete spine and brain MRI without contrast. However, anesthesiologist decided to do the whole thing (with and without contrast as well as cine MRI). My son was sedated for 4 hours.

Results were Chiari of 1.2 cm and syrinx from C1 to T12 and 1 cm front to back. So odd since his symptoms are mild.

He will be decompressed 11/12. This hospital has an intraoperative MRI machine so they will do cine MRI after the decompression to see how his CSF is doing. If it is still minimal, they will remove the dura as well.

Hope this helps! Good luck.
Yvette
This too shall pass.
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