very confused mom

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

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very confused mom

Postby cmmom » Wed Oct 10, 2007 2:23 pm

Went to dr. wisoff With 10 year old son today, he says he would not reccomend surgery and that he doesnt think his symtoms are related to his chiari malformation, the other ns dr. mittler says surgury would help my son . He has a chiari malformation with the cerebellar tonsil extending to the upper border of c1. Someone please help me , My head is spinning ,I just want to make the right decison for my son and I truly do not know what to do . I am sick of seeing him suffer and no one helping him . :( thanks sharon
cmmom
 

Postby willsmom » Wed Oct 10, 2007 5:48 pm

Hi Sharon. I understand your fear and confusion. First of all, take a deep breath and have a glass of wine (if you drink!).

If I were in your shoes I would seek a 3rd opinion as something of a tie breaker. From what I understand Chiari should be decompressed in almost all cases, but especially in someone who is symptomatic. Obviousily I'm not a doctor but if your son is symptomatic, I would go with the surgery. I don't think the CM will get better on its own.

Good luck and keep us informed.
Yvette
This too shall pass.
willsmom
 
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Joined: Fri Sep 14, 2007 8:03 pm
Location: Dallas, Texas

Postby cmmom » Wed Oct 10, 2007 7:55 pm

Dear Yvette, Thanks for the support, I feel like I am up against a brick wall sometimes. I felt like Dr Wisoff didnt really listen to what I had to say , and everybody says he is one of the best, Does this happen with cm alot, Do some doctors like to take a wait and see approach. Me and my husband have another appointment with Dr. mittler in 2 weeks to go over the surgery procedures. Do you know how the chiari institute is On L0ng Island , I have to send all his records before they will give me an appointment. That drink sounds good :) Thanks sharon
cmmom
 

Postby willsmom » Thu Oct 11, 2007 7:48 am

Sharon, I'm happy to try to provide support and encouragement when I can!

The only thing I know about the Chiari Institute is that everyone on here raves about them.

I'm in Dallas. We saw a NS at Children's Hospital here and I was not happy with his bedside manner or that of his assistant. Plus, they couldn't get a total spine and brain MRI scheduled for my son until 11/21. So, we are now going to a Ft. Worth NS who is wonderful from everything I hear.

I guess the way I look at it, no one is going to advocate for your child better than you will. I have fought with doctor's offices (not the docs but the staff) and insurance for about 3 weeks and there are days I want to scream! :shock: But I finally found what I think will be best for my son.

Keep researching and my best advice is to go with the doctor you feel most comfortable with.

Take care.
Yvette
This too shall pass.
willsmom
 
Posts: 119
Joined: Fri Sep 14, 2007 8:03 pm
Location: Dallas, Texas

Postby brianfsmom » Thu Oct 11, 2007 4:41 pm

Goodness, Sharon, I am sorry that you didn't have a good experience with Wisoff. One thing is that if he believes something, that will be his belief.

If I were you I would do what was suggested and get a third opinion, or a fourth as well.

Your son has a syrinx, and Wisoff didn't think he needed decompression? Is the syrinx very small, to make him say that? Also, that sounds like a very minimal herniation. Some "old school" doctors will think that doesn't need correction. Your son probably needs to have an MRI with a flow study, a CINE MRI.

It is troubling when two doctors say two different things. I would recommend seeing either Dr. Feldstein or Dr. Souweidane if you want to stay in NYC. However, the chairi institute will surely put you through all the testing necessary to give you a full diagnosis.

Good luck, and let us know how you make out. I was prepared to see as many doctors as necessary, but we never found a different opinion in the bunch with our son.
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