Re: Doctors at Columbia University

[Guest guest]

I would have a tendency to want to go to a place where you can get a fresh

muscle

biopsy. You can do that in Atlanta and not in New York. You could start in

Atlanta,

where you can get a diagnosis only, not treatment and then you could go to New

York. I would certainly take both boys. If your unaffected boy is autistic he

may not be

unaffected. That would be neurologic involvement. There are a lot of people who

have no symptoms until they are adults.

[Guest guest]

Hi, e,

Dr. DiMauro

has done muscle biopsy and blood work on my boys, but only the samples. We did not go and see him. I know some have had long waits getting

results back from him in the past.

That was a long time ago and maybe it’s better now. It seems people have had a long wait

wherever they’ve gone. Good luck

with your boys and the doctor search.

Cindy (mom to Seth and Ben, both mito)

-----Original

Message-----

From: e

Sent: Thursday, March 24, 2005

4:47 PM

To: Mito

Subject: Doctors at

Columbia University

Does anyone see Doctors DeVivo and DiMauro at Columbia

in New York? We just found out our Genetics doctor is trying to get insurance

approval for our twin boys to be seen there. I originally had wanted to take

just our one affected son to Shoffner for a muscle biopsy, but our doctor

thinks these two at Columbia would be interested in both our sons, because

the one is possibly mito affected, and his twin brother has autism, but with

no signs of mito. I guess DiMauro has an interest in the Mito-Autism connection,

if any.

I guess I'm just wondering, if your children are their

patients, can you tell me a bit about them and the facility, etc. I have

never heard of these two before.

Thanks,

e *Ü*

[Guest guest]

Hi e,

I've been a patient at Columbia Presbyterian since 1994 and have seen these and other docs there. Dr DiMauro is absolutely wonderful but no longer sees patients unless they are involved in his research studies. Dr. De Vivo, as far as I know, sees pediatric patients. My daughter saw him years ago. He was very knowledgeable. I believe Dr. Petra Kaufman is there and also sees pediatric patients. They also do fresh biopsies now which is an added bonus. They do have a MDA clinic there also if your insurance doesn't cover all the expenses. There is a Mc House on the east sidethat caters to Sloan Ketterling but I have stayed there in the past. The hospital social service department must set it up. If you want more info from me let me know or pass on my e-mail addy.

[Guest guest]

I guess I should read all the posts on the topic before I respond. Sorry! I would check with Columbia regarding the appointment wait. They have always had appointments right up to the last minute when I have called. Maybe its different for new patients. Again they have a MDA clinic there also that covers bills that your insurance doesn't pay. There was a long wait for the results from the frozen part of the biopsy but the results on the fresh part were back within weeks. From what I have heard, the reason for the fresh biopsy is to do testing that can't be done on the frozen tissue. They do eventually freeze the sample but only after the fresh tissue is tested. With my biopsy, there was a lab tech in the surgery room that took the tissue and ran to the lab to start testing immediately. He really hurried so time must be really important. I had results on the complex deficiences within 2 weeks. I hope this helps

[Guest guest]

Hi Cindy,

I forgot that the clinic coordinator for our doctor did say that we may just send them samples instead of going all the way to NYC. She did also say that the wait time is very long, and that it wouldn't be until Fall that we'd be able to get in anywhere. I guess insurance is the biggest hang up though. Isn't it always?! It's both a blessing and a curse!

e *Ü*

-- RE: Doctors at Columbia University

Hi, e,

Dr. DiMauro has done muscle biopsy and blood work on my boys, but only the samples. We did not go and see him. I know some have had long waits getting results back from him in the past. That was a long time ago and maybe it’s better now. It seems people have had a long wait wherever they’ve gone. Good luck with your boys and the doctor search.Cindy (mom to Seth and Ben, both mito)

[Guest guest]

Thanks ! That is exactly the information I was looking for! That helps alot!

e *Ü*

-- Re: Doctors at Columbia University

Hi e,

I've been a patient at Columbia Presbyterian since 1994 and have seen these and other docs there. Dr DiMauro is absolutely wonderful but no longer sees patients unless they are involved in his research studies. Dr. De Vivo, as far as I know, sees pediatric patients. My daughter saw him years ago. He was very knowledgeable. I believe Dr. Petra Kaufman is there and also sees pediatric patients. They also do fresh biopsies now which is an added bonus. They do have a MDA clinic there also if your insurance doesn't cover all the expenses. There is a Mc House on the east sidethat caters to Sloan Ketterling but I have stayed there in the past. The hospital social service department must set it up. If you want more info from me let me know or pass on my e-mail addy.

Please contact mito-owner with any problems or questions.

[Guest guest]

> Hi ,

> You know, I spoke to the clinic coordinator for our Genetic doctor yesterday

> about not being able to get a fresh biopsy done in NY. She said that she

> went to a Mitochondrial conference last August where this speaker gave a one

> hour long talk on the fact that it really doesn't matter if it's fresh or

> frozen. This speaker said that they freeze it anyway because it's easier to

> work with. >

I went to the mito conference in Pittsburgh last August and heard no such thing.

I

heard them admit that fresh IS better. When they do fresh biopsies, they do

freeze

PART of it to do additional studies. It does matter if they do fresh vs frozen.

We

have been offered frozen and have refused. I know of several families who have

had negative frozen results and multiple positive fresh results.