Muscle Biopsy in Cleveland

[Guest guest]

Debbie

do I concurr...we only visited UCSD once and never again.....their attitude , never mind.....you can get contact info for Dr. Cohen on line at the Cleveland Clinic website....you may get a faster appointment with Dr. Shoffner in Atlanta...these are really the only 2 places I know off that are good for the biopsy...Max had her biopsy in Atlanta...we also travelled from California...we live close to Monterey.....our insurance did not pick up the travel cost....

you may want to run a dual track in applying to both places and see where you get in first.... I have heard that Shoffner now does accept a larger variety of insurance...do you have copies of all medical correspondance and any testing( blood etc) to take and mail ahead ?

Unfortunately/fortunately all the work is left to you. You have to do for Taryn what you think is right. Once you have a dx, you may get some more help from UCSD.

hope this helps

best regards,

rosy, mum to max 5 1/2

[Guest guest]

Hi everyone

I am wondering if anyone has the contact information for Dr. Cohen

at the Cleveland clinic, as far as who you speak to to set up your

childs muscle biopsy?

My daughter Taryn, 3 yrs old, has a possible mito disease, in the

transport chain complex 3. We go to UC SanDiego to Dr. Haas and Dr.

Barshop but after going back and forth with them in regards to the

muscle biopsy they told our pediatrcian that it would be best to set

it up to have it done in Cleveland, and that I can call there to

start the process of setting it up. Now I guess I have to do all the

guess work , as usual for us parents...and find the numbers ect to

start the process. Does this seem normal. I dont find UCSD very

imformative or helpful but we dont have many other choices in

California. Maybe others have a different opinion on them but we

havent been too impressed. They described Taryn as a " work in

progress " with " risk of progression due to a mito disease " . They

also said it would be good to get a second opinion for her over

there. Does anyone know if insurance companies pay for airline

tickets/ Hotels or if anyone knows of any places that help families

with that type of thing? We will be going from California to

Cleveland.

Thanks Debbie (mother of Taryn)

www.caringbridge.org/ca/taryn

[Guest guest]

The waiting list for Cohen is over a year. Don't accept an appointment with

the fellow. You really need a referral from your docs and then you have to wait

for more than a year. If your mito docs suspect a specific defect, they can

call

Cohen and ask him to order a biopsy looking for specific things. That may

shorten your wait with him--because you wouldn't even see him. He'd

schedule your appts with surgeons.

You really can't make the call to Cleveland to set things up. The waiting list

is

very long even with MD referrals.

Patient Travel

http://www.npath.org/

You can call 24 hours a day, 7 days a week:

1-

Miracle flights for kids

www.miracleflights.org

free flights for medical care on commercial and private planes

http://www.airlifeline.org/a1/servlet/visit

These people offer free flights for medical care.

Angel Flight

http://www.angelflight.com/

These people offer free flights for medical care.

[Guest guest]

I started bringing my daughter to Clevleand in Dec and she will be having her muscle biopsy there soon. She see's Dr. Sumit Parikh who is in Dr. Cohen's office and is just awesome. . I have moved from florida to ohio just to go there the cleveland clinic is such a great place. CaringBridge.org - skyenicoleanastasia

[Guest guest]

Debbie, Angelflights # is 1800 352-4256 they flew me and skye from florida to cleveland over the past few months. Call them 7 days in advance of when you need your flight. It is free.....it is all private pilots that donate their time and planes to get sick kids where they need to be for care. You may have to take a few flights but it is so much easier flying with them then flying on a big airliner. GOOD LUCK!

[Guest guest]

YOU CAN CALL AND MAKE APPTS THERE VERY VERY EASILY. My daughter doesn't see Cohen but he reviews all of her workups. The fellow Dr Parikh is very very good. Much better care there. I never walk out of an appt feeling like I have no answers or am confused. I always get an explanation on everything. We see the epilespy doc there too and it only took me 2 weeks to get in with him. It took a month to schedule a sleep study, mri, eeg, evoked potential, skin biopsy, swallow study, upper gi series, to see the gi doc. They scheduled everything for us and we stayed at the ronald mcdonald house There is a shuttle that takes you to and from the hospital 24hrs a day. I had out of state medicaid and they still saw my daughter with no bill. IT CAN BE DONE! I'm praying that it all works out for you and taryn. God Bless Usually we spend about 5hrs at the clinic when we see parikh and the seizure docs because they take the time to explain everything to us.................i wouldn't want to be any place else with my daughter

CaringBridge.org - skyenicoleanastasia

[Guest guest]

Hi Debbie,

I know others have said how difficult it is to get in for the biopsy, but I thought I would give you the numbers in case you decide to call and plead your case with Dr. Cohen's office.

Cleveland Clinic switchboard: or x45559 for appts. and x49182 for Dr. Cohen's office (his nurse's name is Fran, but I think she only speaks to established patients?)

Just keep fighting for what you need. Politely drive people crazy if you have to. Keep bugging Taryn's neurologist (find out what nurse to talk to there and plead your case for help) and get them to call for you. I learned, the very hard way, to be extra assertive, in a very respectful way, with drs. offices.

Good luck! Hang in there. It may be a very long wait on the full biopsy results too, but they may get some info that could help in the meantime.

Donna

Muscle Biopsy in Cleveland

Hi everyoneI am wondering if anyone has the contact information for Dr. Cohen at the Cleveland clinic, as far as who you speak to to set up your childs muscle biopsy?My daughter Taryn, 3 yrs old, has a possible mito disease, in the transport chain complex 3. We go to UC SanDiego to Dr. Haas and Dr. Barshop but after going back and forth with them in regards to the muscle biopsy they told our pediatrcian that it would be best to set it up to have it done in Cleveland, and that I can call there to start the process of setting it up. Now I guess I have to do all the guess work , as usual for us parents...and find the numbers ect to start the process. Does this seem normal. I dont find UCSD very imformative or helpful but we dont have many other choices in California. Maybe others have a different opinion on them but we havent been too impressed. They described Taryn as a "work in progress" with "risk of progression due to a mito disease". They also said it would be good to get a second opinion for her over there. Does anyone know if insurance companies pay for airline tickets/ Hotels or if anyone knows of any places that help families with that type of thing? We will be going from California to Cleveland.Thanks Debbie (mother of Taryn)www.caringbridge.org/ca/taryn Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Debbie,

Regarding the flight from California to Ohio, there are several places to turn that provide air transport for medical reasons to families, I know one of them is called Angel Flight. They have a web site but I don't know their address. Best wishes, Jonifogeldebbie wrote:

Hi everyoneI am wondering if anyone has the contact information for Dr. Cohen at the Cleveland clinic, as far as who you speak to to set up your childs muscle biopsy?My daughter Taryn, 3 yrs old, has a possible mito disease, in the transport chain complex 3. We go to UC SanDiego to Dr. Haas and Dr. Barshop but after going back and forth with them in regards to the muscle biopsy they told our pediatrcian that it would be best to set it up to have it done in Cleveland, and that I can call there to start the process of setting it up. Now I guess I have to do all the guess work , as usual for us parents...and find the numbers ect to start the process. Does this seem normal. I dont find UCSD very imformative or helpful but we dont have many other choices in California. Maybe others have a different opinion on them but we

havent been too impressed. They described Taryn as a "work in progress" with "risk of progression due to a mito disease". They also said it would be good to get a second opinion for her over there. Does anyone know if insurance companies pay for airline tickets/ Hotels or if anyone knows of any places that help families with that type of thing? We will be going from California to Cleveland.Thanks Debbie (mother of Taryn)www.caringbridge.org/ca/taryn Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Our granddaughter is a Dr. Cohen patient and we contact his office with . When you call just tell them what you need and they will direct your call appropriately. There is a Cleveland Clinic website that may help you with other logistics. Our best wishes to you in obtaining your daughters muscle biopsy.

Re: Muscle Biopsy in Cleveland

Hi Debbie,

Regarding the flight from California to Ohio, there are several places to turn that provide air transport for medical reasons to families, I know one of them is called Angel Flight. They have a web site but I don't know their address. Best wishes, Jonifogeldebbie wrote:

Hi everyoneI am wondering if anyone has the contact information for Dr. Cohen at the Cleveland clinic, as far as who you speak to to set up your childs muscle biopsy?My daughter Taryn, 3 yrs old, has a possible mito disease, in the transport chain complex 3. We go to UC SanDiego to Dr. Haas and Dr. Barshop but after going back and forth with them in regards to the muscle biopsy they told our pediatrcian that it would be best to set it up to have it done in Cleveland, and that I can call there to start the process of setting it up. Now I guess I have to do all the guess work , as usual for us parents...and find the numbers ect to start the process. Does this seem normal. I dont find UCSD very imformative or helpful but we dont have many other choices in California. Maybe others have a different opinion on them but we havent been too impressed. They described Taryn as a "work in progress" with "risk of progression due to a mito disease". They also said it would be good to get a second opinion for her over there. Does anyone know if insurance companies pay for airline tickets/ Hotels or if anyone knows of any places that help families with that type of thing? We will be going from California to Cleveland.Thanks Debbie (mother of Taryn)www.caringbridge.org/ca/taryn Please contact mito-owner with any problems or questions.

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