The Never ending Biopsy Debate

[Guest guest]

Shoffner did my biopsy and it was very thorough.

Vivian

MELAS

[Guest guest]

Hello all,

I have a question on the biopsies that ppl have had done.

With out many answers still the next option for myself is

to have a fresh biopsy done. I believe that I will get one

at this stage. Rheum. and Endocrine Docs haven't found

anything and the frozen biopsy got so messed up no one

can seem to agree if I am truly diagnosed or not. AGHHH!!

So here is the big question......

Where to have it done..... Cleveland or Atlanta

I have the opportunity if I go to Atlanta to stay with friends.

Otherwise I live 4 hours from Cleveland and very little support.

But who does the most comprehensive work up? If I am going

to go through another surgery, I want the most information back

out of it all. From what I hear, Shoffner is very comprehensive

in his testing and biopsy work ups. Is Cleveland just as thorough?

Do they do all the pre biopsy work up like shoffner?

Any and all thought on the matter would be most appreciated.

You all have given our family so much, I feel like I can't thank you enough.

Hope and Health,

AnnMarie- Complex IV (depends on who you ask ... hahaha)

Married to my best friend Rick, mom of (14), (11), Cassandra(5

1/2)

and Joe(4) - complex IV, lactic acidosis, CP, tethered chord syndrome,

dysautonomia, and a smile that never quits :-)

[Guest guest]

Laurie had her first done in Atlanta and her second in Cleveland. My

daughter and I had ours done in Cleveland because it was closer and they

would do adults and Shoffner wasn't doing adults at that particular

time. Shoffner does more detailed testing, but in our case it didn't

yield any more specific answers than we received in Cleveland. At one

time I believe Cleveland was sending some of the testing to Shoffner

that they couldn't do in Cleveland. My daughter and I had our bx in

1999 and I think Laurie had hers done by Shoffner in 1997. The only

real difference that I can think off right off the bat is that because

of all the extra testing that Shoffner can do, his results usually take

longer to receive. Again, this was a few years ago.

Hugs,

AM L wrote:

>Hello all,

>I have a question on the biopsies that ppl have had done.

>With out many answers still the next option for myself is

>to have a fresh biopsy done. I believe that I will get one

>at this stage. Rheum. and Endocrine Docs haven't found

>anything and the frozen biopsy got so messed up no one

>can seem to agree if I am truly diagnosed or not. AGHHH!!

>So here is the big question......

>Where to have it done..... Cleveland or Atlanta

>I have the opportunity if I go to Atlanta to stay with friends.

>Otherwise I live 4 hours from Cleveland and very little support.

>But who does the most comprehensive work up? If I am going

>to go through another surgery, I want the most information back

>out of it all. From what I hear, Shoffner is very comprehensive

>in his testing and biopsy work ups. Is Cleveland just as thorough?

>Do they do all the pre biopsy work up like shoffner?

>Any and all thought on the matter would be most appreciated.

>You all have given our family so much, I feel like I can't thank you enough.

>Hope and Health,

>

>AnnMarie- Complex IV (depends on who you ask ... hahaha)

>Married to my best friend Rick, mom of (14), (11), Cassandra(5

>1/2)

>and Joe(4) - complex IV, lactic acidosis, CP, tethered chord syndrome,

>dysautonomia, and a smile that never quits :-)

>

>

>

>

>

>

[Guest guest]

Ann Marie

I have had fresh biopsies in both places (long story as to why). Dr.

Shoffner did the first and it took a very long time to get in and then a

very long time to get results, but the report was very through. If you are

going to have DNA testing done, then that is probably the place to go as

Cleveland Clinic sends tissue there for DNA evaluations. The DNA studies are

very expensive. I had this done without any results.

My biopsy at Cleveland Clinic was done about 5 years later. I had to make a

trip to see the surgeon, and another trip for the biopsy. I had my results

in about a month. I am also about 4 hours away. I found it less expensive

to drive to Cleveland than to fly to Atlanta. That meant renting a car,

paying for hotel, etc. I find it convenient to go to Cleveland. I drive and

spend a night at the Guesthouse. Once there, the parking is free in a secure

lot and I take the shuttle wherever I need to go.

I can't say that I found one to be better than an other. One thing about

seeing Shoffner is that you don't have to see another doctor first.

laurie

>

> Reply-To:

> Date: Fri, 02 Apr 2004 12:18:27 -0500

> To: Mito Mito >, Mitoldies >

> Subject: The Never ending Biopsy Debate

>

> Hello all,

> I have a question on the biopsies that ppl have had done.

> With out many answers still the next option for myself is

> to have a fresh biopsy done. I believe that I will get one

> at this stage. Rheum. and Endocrine Docs haven't found

> anything and the frozen biopsy got so messed up no one

> can seem to agree if I am truly diagnosed or not. AGHHH!!

> So here is the big question......

> Where to have it done..... Cleveland or Atlanta

> I have the opportunity if I go to Atlanta to stay with friends.

> Otherwise I live 4 hours from Cleveland and very little support.

> But who does the most comprehensive work up? If I am going

> to go through another surgery, I want the most information back

> out of it all. From what I hear, Shoffner is very comprehensive

> in his testing and biopsy work ups. Is Cleveland just as thorough?

> Do they do all the pre biopsy work up like shoffner?

> Any and all thought on the matter would be most appreciated.

> You all have given our family so much, I feel like I can't thank you enough.

> Hope and Health,

>

> AnnMarie- Complex IV (depends on who you ask ... hahaha)

> Married to my best friend Rick, mom of (14), (11), Cassandra(5

> 1/2)

> and Joe(4) - complex IV, lactic acidosis, CP, tethered chord syndrome,

> dysautonomia, and a smile that never quits :-)

>

>

>

>

>

>

[Guest guest]

I got definite results from one fresh muscle biopsy, by Shoffner.

Waiting on DNA results. We drove to Atlanta from Phila. area, nice

town, check out the museum and zoo if you can.

Take care,

RH

> Ann Marie

>

> I have had fresh biopsies in both places (long story as to why). Dr.

> Shoffner did the first and it took a very long time to get in and

then a

> very long time to get results, but the report was very through. If

you are

> going to have DNA testing done, then that is probably the place to

go as

> Cleveland Clinic sends tissue there for DNA evaluations. The DNA

studies are

> very expensive. I had this done without any results.

>

> My biopsy at Cleveland Clinic was done about 5 years later. I had

to make a

> trip to see the surgeon, and another trip for the biopsy. I had my

results

> in about a month. I am also about 4 hours away. I found it less

expensive

> to drive to Cleveland than to fly to Atlanta. That meant renting a

car,

> paying for hotel, etc. I find it convenient to go to Cleveland. I

drive and

> spend a night at the Guesthouse. Once there, the parking is free in

a secure

> lot and I take the shuttle wherever I need to go.

>

> I can't say that I found one to be better than an other. One thing

about

> seeing Shoffner is that you don't have to see another doctor first.

>

> laurie

>

> > From: AM L

> > Reply-To:

> > Date: Fri, 02 Apr 2004 12:18:27 -0500

> > To: Mito Mito >, Mitoldies

>

> > Subject: The Never ending Biopsy Debate

> >

> > Hello all,

> > I have a question on the biopsies that ppl have had done.

> > With out many answers still the next option for myself is

> > to have a fresh biopsy done. I believe that I will get one

> > at this stage. Rheum. and Endocrine Docs haven't found

> > anything and the frozen biopsy got so messed up no one

> > can seem to agree if I am truly diagnosed or not. AGHHH!!

> > So here is the big question......

> > Where to have it done..... Cleveland or Atlanta

> > I have the opportunity if I go to Atlanta to stay with friends.

> > Otherwise I live 4 hours from Cleveland and very little support.

> > But who does the most comprehensive work up? If I am going

> > to go through another surgery, I want the most information back

> > out of it all. From what I hear, Shoffner is very comprehensive

> > in his testing and biopsy work ups. Is Cleveland just as

thorough?

> > Do they do all the pre biopsy work up like shoffner?

> > Any and all thought on the matter would be most appreciated.

> > You all have given our family so much, I feel like I can't thank

you enough.

> > Hope and Health,

> >

> > AnnMarie- Complex IV (depends on who you ask ... hahaha)

> > Married to my best friend Rick, mom of (14), (11),

Cassandra(5

> > 1/2)

> > and Joe(4) - complex IV, lactic acidosis, CP, tethered chord

syndrome,

> > dysautonomia, and a smile that never quits :-)

> >

> >

> >

> >

> >

> >