Dr. Question..

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

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Dr. Question..

Postby lhodnett73 » Thu Jun 26, 2008 8:42 am

My girls are seeing Dr. Carmel at UMDNJ and has had Dr. J Bello ( neuroradioloigist from Montefiore Hosp in the Bronx) re-review all of their MRIs' and studies. Just curious if anyone knows these 2 doc and has any feedback for me. Dr. Carmel is our second opinion. I don't want to get a third unless needed so I was hoping someone would know them!
Lisa
mom to
Kelli (9) and Ryan (6) both with thoracic syringomyelias and thoracic tethered cords
and my babies Thomas and Bailey 4 months!
lhodnett73
 
Posts: 11
Joined: Tue Aug 07, 2007 7:28 pm
Location: NJ

Re: Dr. Question..

Postby brianfsmom » Thu Jun 26, 2008 10:32 am

Hi

Out of curiosity, if Carmel is your second opinion, who is your first surgical opinion? Or are you saying you would use Carmel either way for surgery, based on the neuroradiologist's opinion at Montefiore? I know they have a pediatric surgical department up there with some chiari experience.

I have heard of Carmel but never met him. We emailed briefly, Dr. Frim had given me his name because I am in NJ. At the time, he had a very different approach to the surgery with regards to the duraplasty. I'd be curious to hear what his technique is these days.

Good luck!
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Re: Dr. Question..

Postby lhodnett73 » Thu Jun 26, 2008 12:13 pm

We actually started at CHOP ( Philadelphia) where they found the syrinx when looking for something else. the surgeon did not even tell me it was there when we got the results. My pediatrician noticed it on their copy of the report. So we started seeing Dr. Campbell at DuPont and felt that we needed someone with mpore experience since both girls had it and I had some concerns about a few things. So we then ended up with Dr. Carmel. Dr. carmel reviewed my girls films and then brought them to Montefoire for another opinion. So he is working in conjunction with Dr. Bello at this point. Both my girls have tethered thoracic cords and he wants to take the wait and see approach. I just have so many questions and can't decide what to do. From my understanding it is so rare to have a tether as high as they do part of me thinks I should see someone who has seen it. Both Dr. Carmel and Dr. Bello have never seen it before.
Lisa
mom to
Kelli (9) and Ryan (6) both with thoracic syringomyelias and thoracic tethered cords
and my babies Thomas and Bailey 4 months!
lhodnett73
 
Posts: 11
Joined: Tue Aug 07, 2007 7:28 pm
Location: NJ

Re: Dr. Question..

Postby Janice » Thu Jun 26, 2008 1:46 pm

I have thoracic SM but I've never heard of thoracic tethered cord either. It sounds like surgery of any kind, would be very traumatic. The thoracic area is so important because it houses a number of our vital (major) organs and the neurons connected to these organs. If surgery were ever recommended, I think it would be extremely important to know exactly where the surgeon would cutting. You need to know which organs would be impacted.

You never know, some surgeries never seems to be as scary as we imagine them to be. I believe that if it were my girls, I would want to take a wait and see approach. However, I would also try to get them to the best expert out there in order to know for sure that it is the right approach. I don't know, it's really all assumption on my part because I'm not in your shoes.

I do know that my heart goes out to both of them. Have the doctors been able to determine how their syringes developed? It's possible it's because of the thoracic tethered cord. It's so rare that I would want to know how both my children got it. Are you or your husband showing any signs of neurological deficit?

I'm going to see what information I can find on thoracic tethered cord and I'll definitely let you know what I come up with. It may be something you haven't come across yet.

My thoughts and prayers are with you all as a family. If you ever need someone to talk to, you can PM me, send me an email or IM (I'm on yahoo). I'm here as are many others in this very supportive ASAP family. ((((((((((hugs))))))))))

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
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Location: Escondido, California

Re: Dr. Question..

Postby brianfsmom » Thu Jun 26, 2008 9:11 pm

Hi Lisa

I am sorry to hear that about your daughters. How strange that they would both have the same thing.

I have personally never been to CHOP for this but from many stories I have read I will never go there, either! I believe that Dr. Carmel is well connected and respected, and if he says wait and see I would feel comfortable with that. He may not have seen it before, but surely he has many contacts in the neurosurgical world with whom he can consult. Of course, Dr. Frim comes to mind as he sees so many pediatric cases, and might have seen this before. If you can manage a trip out that way.

I hope they will do well and the wait-and-see will yield good results!
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Posts: 186
Joined: Thu Jul 26, 2007 2:31 pm


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