new to cm

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

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new to cm

Postby cmmom » Mon Oct 01, 2007 1:58 pm

My son just had an mri , the report says there is tonsillar herniation with beaking and the fourth ventrilcle is seen in the posterior fossa do you or anyone know what this means . does this mean he has cm, also can any one reccomend a neuro surgeon in ny thanks sharon
cmmom
 

cm

Postby brianfsmom » Tue Oct 02, 2007 1:38 pm

Hi

are you in NYC?

There are several excellent surgeons in NYC:

Dr. Wisoff at NYU
Dr. Feldstein at Columbia Presbyterian
Dr. Souweidane at NY Hospital (Cornell)
Montefiore Medical Center (Dr. Abbott and another doctor, I forget his name right now)

to name a few.

Also, the chiari institute is on Long Island, not far from you. Many people swear by them, I have no personal experience. We saw all the doctors above and would have felt comfortable with any of them.

The 4th ventricle in the posterior fossa could be CM2 - you really should get an expert to look at the films; don't rely on the radiologist report!

Good luck, please let us know how you make out. Dr. Souweidane did my son's decompression. He is doing well. He's extremely nice and will spend all the time you need explaining the situation. Actually, all of those doctors will do that. They are all wonderful people.
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Postby cmmom » Wed Oct 03, 2007 2:13 am

Hi, thanks for the doctors , we have an appointment with dr. wisoff on oct24th . My son is ten years old , we have been on a roller coaster ride for the past ten years no one has listened to me about his headaches, and his leg pains we finally went to an orthopedic who did the mri and found these results. I am kinda of numb, I am trying to understand cm and syringomyelia. Thanks to this website I am finally understanding my sons symtoms. I am so glad to hear your son is doing good . I will let you know how our appointment goes.. thanks you so much again Oh one more question Did you have a problem with ns taking your insurance. Dr wisoff is the only one who takes our insurance ? thanks sharon
cmmom
 

Postby willsmom » Wed Oct 03, 2007 7:49 am

Sharon, your story sounds similar to ours. My son is 14 and luckily we have only dealt with CM and SM for the past 6 months. But we were seeing an orthopedic who ordered a cervical MRI only to discover a 7-8 mm herniation and a syrinx from C1 to at least T4. (Waiting on complete spinal MRI to see just how far down it really goes.)

We live in a Dallas suburb and our insurance plan did not have any pediatric neurosurgeons in the Dallas area! I was shocked. But b/c they didn't, they agreed to pay in network benefits to an out of network pediatric neurosurgeon.

For a variety of reasons we pursued a different surgeon in the area and lo and behold, we found one in Ft. Worth who is on our insurance! (For those not familiar, FW and Dallas are often linked as the Dallas/FW area so not sure why insurance didn't recommend this FW doc in the first place.)

So far I have found that you sometimes really have to "fight" to get the best treatment for your child. It seems the insurance companies aren't familiar with CM or SM and often the staff at the non neurosurgery doc's offices, dont' know about it either.

This is all very scary. But as you pointed out, this board is so helpful in not only understanding CM and SM but the emotional support as well.

Good luck to you and your son. Keep is updated on his journey.
Yvette
This too shall pass.
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Postby brianfsmom » Wed Oct 03, 2007 9:15 am

Hi Sharon

Some doctors took our insurance, others did not. Wisoff takes a lot of insurance - we almost went with him. Souweidane was in my book, but had dropped the insurance. I don't know if I would have used him had I known this, but it all worked out fine. We have out of network coverage as well and they worked with us so it didn't cost more than the out of pocket. Just a warning on NYU - check with their anesthesia department if you are scheduling surgery. Although everyone else was in my plan, they were not. It would have cost me the same as going with an out of network doctor, but in-network services, which is what I did.

Anyway, that aside, Wisoff is an excellent surgeon and highly regarded in the world of pediatric neurosurgery. I know a few people who have had surgery with him and they do fine. His follow-up is excellent as well. You will love him, and I can promise you that he will make you feel more calm about the whole situation. He's been doing chairi decompressions for about 20 years now. He did a whole paper on it, which he will probably show you/give you during the visit.

His office can be an adventure to visit, too ;-) It's an interesting waiting room.

Good luck!
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Postby cmmom » Thu Oct 04, 2007 8:17 am

Thanks for the great advise and support. My sons orthopedic thinks he should start physical therapy, do you guys know if this helps , I do not know what we should do , Have any of you use physical therapy to help with the weakness in the legs . My girlfriend who is a nurse doesnt think this will help him. I am not sure, I dont think my orthopedic doctor is to familiar with cm. thanks sharon
cmmom
 

Postby brianfsmom » Thu Oct 04, 2007 4:41 pm

Depending on the therapy, it may or may not help. I'd be more concerned with whether it might hurt, so I'd want to get an opinion from a neurosurgeon or someone else first.

I would think you'd want to treat the source of the weakness first, then start the therapy to build up whatever might have been lost. Two weeks until your appointment shouldn't make a huge difference, after ten years :-). Even though it probably seems like an eternity to you right now.

Good luck and keep us posted!
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Postby cmmom » Thu Oct 04, 2007 6:35 pm

:) I agree with you, I will wait until he goes to the ns. Thanks for help, You are keeping me sane through all this , I will keep you updated. Thanks sharon
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