Newly diagnosed looking for surgeon

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

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Newly diagnosed looking for surgeon

Postby m3smom » Mon Feb 25, 2008 10:11 pm

Hi Everyone,
I have an 11 yr old son who has just been diagnosed with a syrinx, tethered cord and lypoma. We just completed the last set of MRI's and are being referred to a NS. I will hear from the neurologist tomorrow regarding the last MRI. I am looking for a specialist. I have looked in other messages, but could use some help. We live in Toledo, Ohio and 45 minutes from Univ. of Michigan. We have contacted Dr. David Frim's office in Chicago and we are going to send our films. Is this a good choice? Or are there others you can suggest?
Any suggestions on where to go next? This is so new we are trying our best to find the right specialist for our son.

Thank you,
Linda
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Postby angie7 » Mon Feb 25, 2008 10:18 pm

Dr Frim is one of the best when it comes to peds. He is an excellent choice and definately one that many on here will recommend!
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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surgeons

Postby Sara » Tue Feb 26, 2008 12:05 pm

I have heard good feedback from Ann Arbor michigan, but don't know any of their surgeons personally. My daughters are treated in Madison Wisconsin, Dr Iskandar.
http://www.neurosurg.wisc.edu/cv_iskandar.asp

Sara
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Postby m3smom » Sat Mar 01, 2008 8:06 pm

Thanks so much for your responses. We have found out that his syrinx go the entire length of his spinal cord and he does have a tethered cord and lipoma. Not sure what that will mean. Now we are waiting to hear from Dr. F's office and will be seeing a local NS this week. We know we do not want to stay local, but thought we would hear what he has to say.

Thanks again,
Linda G.
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Postby lovemyblessings » Mon Mar 17, 2008 12:52 am

We have three with Chiari.

I personally would stay FAR FAR away from U of M. We went there for second opinion and were told that it isn't Chiari unless there is a herniation of 6mm or more. If that were used to determine the treatment for my oldest Chiari child, he'd still be on the couch in misery.

We've been very happy with our doctor at Children's Hospital in Detroit. He was recommended to us by Dr. Frim.

Feel free to PM me if I can be of more help!
~Dawn~
Blessed Mommy to six amazing blessings here with us
John 10, Marah 8½, Keegan 7½, Luke 5½, Quintin 4½, and Ruth 3
Caleb Logan expected in August and
And three blessings waiting in Glory, including Selah Marie born @ 17 weeks 4/15/2009
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Postby lcolangelo » Fri Mar 21, 2008 2:02 pm

I'm not sure how far you are from Iowa-- but we travel from Buffalo Ny to the University of Iowa for our neurosurgeon-- he is rated the best in the country-- people travel from all over the world to see him-- It is a beautiful facility with a wonderful Ronald Mcdonald house. His name is Dr. Arnold Menezes--
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Postby KyliesSis » Tue Mar 25, 2008 2:38 pm

M3smom, did you get a reply from Dr. Frim?

I highly recommend him, very good doctor.

If you were looking for a doctor in Michigan, I've heard good things about Dr. Hugh J.L. Garton. A friend recommended him, maybe you should give him a call as well. Here is a link to his page:
http://www2.med.umich.edu/healthcenters/provider_profile.cfm?individual_id=68227

and his phone number is : 734-615-0536

Hope this helps!
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
Scoliosis
Kyphosis
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Postby m3smom » Fri Mar 28, 2008 4:10 pm

We did finally hear from Dr. Frim's office. We decided to schedule surgery in June, right after school is out. Mitch does have a tethered cord and syrinx. If his symptoms get worse we will go sooner. I still feel like I have a million questions. We will being seeing Dr. Frim in the clinic a couple days before surgery.

Thanks so much for all the recomendations!

Linda
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Postby m3smom » Mon Apr 07, 2008 8:31 pm

New update!! We decided to push up surgery to May. I feel better now that the surgery date is closer. He seems to be having more symptoms and is ready to have te surgery. Now to get to May !

Thanks again for all the help.

Linda
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