Second Opinion

March 6, 2009

I do not disagree with anything you say.

You read too much into my words perhaps.

Perhaps my typo added to the confusion -

I intended to type: Doctors can only offer an educated guess.

I was looking at the other side of the coin - doctors labor long and

hard to study and learn from books, experience, peers, and other

sources, and my intention was to point out that patients, which the

books are written about, also have considerable experience which is

very valuable; especially with a large and diverse group of people who

live with various conditions - such as the members in this group - and

such a group-experience can offer very very valuable advice also.

Doctors are humans, not all knowing, and an educated guess is not an

insult. It is one way of saying that they do their Best; the best is

sometimes perfect, but sometimes a second doctor (or others such as a

research-oriented grad student) may look at the data differently and

come to a different conclusion. Sometimes new research turns

everything upside down - and everyone must rethink long held opinions.

Looking for a second 'opinion' seems very logical to me, not ignorant.

I also see little harm in searching for a second opinion - except in

rare situations where time is of the essence and life or limb are at

risk without immediate action.

Vince

On Fri, Mar 6, 2009 at 1:55 PM, pat040394 <ltpat228@...> wrote:

> J Cataldi

>

> Doctors can only offer and educated guess.

>

> ~~~~~~~~~~~~~~

>

> ?

>

> The above is probably one of the most ignorant comments I have ever read.

>

> Physicians [especially Specialists] go to school for years on end, let alone

> research, Internships, hands-on medicine and God knows what else as I am no

> Doctor.

>

> It's is my educated guess that these people are HIGHLY INTELLIGENT and I

> deeply respect most of them.

>

> It takes a unique individual who earnestly persues then actually experiences

> and practices saving human lives.

>

> ~~~~~~~~~~~~~~~

>

> Experience is also very

>> valuable, and the people in this group may have much more experience

>> in specific areas than some doctors. The opinions you get from here

>> and research on the internet are both ways to inform yourself without

>> long distance travel.

>>

>> When I went seeking advice, I received help from all parts of the world.

>>

>> Vince

>>

>> On Fri, Mar 6, 2009 at 11:57 AM, teecyemp <teecyemp@...> wrote:

>> > I have a question I have spoken to too many doctors always about

>> > different

>> > things I have never gone to seperate doctors about the same problem I

>> > have

>> > always just done what they said and assumed it was the only option and

>> > I've

>> > noticed it seems to be sort of a theme among the posts to see many

>> > specialists about a problem is this perhaps a geographical thing i live

>> > in

>> > scotland and even if i wanted to see someone else the next person could

>> > be

>> > 150miles away am I just lazy in not questioning my doctor or are people

>> > trying to hear what they want.

>> >

>> > I realise this may come off wrong I dont wish to alienate the group just

>> > looking for different opinions I guess so I am sorry if this question

>> > bothers you.

>> >

>>

>

April 6, 2009

is in Birmingham, www.birminghamhbot.com We have seen him for

several years.

HTH,

Debi

>

> I want to see another DAN doc to get a second opinion. We live in Middle

Georgia, but we are willing to drive. We originally took our daughter to the

Marcus Institute(1.5 hrs.for us) so driving is not an issue.I looked on the DAN

website and only a couple listed, but I was uncertain how up to date that is.

Any suggestions??

>

April 6, 2009

is in Birmingham, www.birminghamhbot.com We have seen him for

several years.

HTH,

Debi

>

> I want to see another DAN doc to get a second opinion. We live in Middle

Georgia, but we are willing to drive. We originally took our daughter to the

Marcus Institute(1.5 hrs.for us) so driving is not an issue.I looked on the DAN

website and only a couple listed, but I was uncertain how up to date that is.

Any suggestions??

>

June 15, 2009

Hi,

The two approaches you describe are not mutually exclusive. The titanium

prosthesis is to replace the bones damaged by the CToma with a view to providing

some level of hearing. The cartilidge from the outer ear approach I believe is

intended to replace the ear drum that will have to be damaged or replaced as

part of the CToma removal process. Pretty sure what I said is accurate. Now, in

terms of surgeon choice, you need to find a highly experience specialist that

YOU are comfortable with. Sounds like you have the comfort factor with the

second guy, so if you can validate his credentials he seems like the obvious

choice.

>

> I just went for a second opinion for an attic cholesteatoma. I really liked

this second surgeon- he was much more compassionate than the first one. He did

mention that if the c-toma has erroded the bones, he may have to take it out

(incus?) and replace it with a titanium prothesis. The first surgeon I went to

talked about reconstruction with cartilage from the outter ear. Does anyone

have experience with this, which is the better route or is there a choice? Has

anyone had any experience with Dr. Lesinski in Cincinnati, Ohio??? I have my

surgery tentatively scheduled for Aug. 17. There are only 2

otologist/neurotolgists in the Cincinnati area that I can find.

>

> Thank you, you have all been so helpful!

>

June 15, 2009

using cartilege from the ear tip is common, I had it done. In todays world thye use other things as well.

tom hansen

From: seftonmichelle <seftonmichelle@...>cholesteatoma Sent: Monday, June 15, 2009 9:28:13 AMSubject: second opinion

I just went for a second opinion for an attic cholesteatoma. I really liked this second surgeon- he was much more compassionate than the first one. He did mention that if the c-toma has erroded the bones, he may have to take it out (incus?) and replace it with a titanium prothesis. The first surgeon I went to talked about reconstruction with cartilage from the outter ear. Does anyone have experience with this, which is the better route or is there a choice? Has anyone had any experience with Dr. Lesinski in Cincinnati, Ohio??? I have my surgery tentatively scheduled for Aug. 17. There are only 2 otologist/neurotolg ists in the Cincinnati area that I can find. Thank you, you have all been so helpful!

July 5, 2009

Stacey,

Do you have a location? Can you travel?

On Sun, Jul 5, 2009 at 11:07 AM, kgemom <staceyenlow@...> wrote:

>

> I am looking for suggestions of hospitals or doctors that are well known

> for their treatment of PID. Recently my daugher was diagnosed with CVID

> and we are going to be starting IVIG. What are the best hospitals for

> immune deficiency treatment and research? I was searching on line and

> came across Cincinnati Children's Hospital. Anyone know anything about

> them? We would just like get a second opinion on all of this.

>

> Thanks,

>

> Stacey

>

July 5, 2009

Currently, we are seeing a doctor at Cardinal Glennon Hospital in St. Louis.

We live in SW Missouri, about 5 hours away from St. Louis. Because of our rural

location, I'm figuring we will be traveling no matter what. I was just wanting

to know if there are a few hospitals in the U.S. that are known for their PID

departments? Any suggestions ?

Stacey

________________________________

From: Derrick and <derrickandchristine@...>

Sent: Sunday, July 5, 2009 1:14:39 PM

Subject: Re: second opinion

Stacey,

Do you have a location? Can you travel?

On Sun, Jul 5, 2009 at 11:07 AM, kgemom <staceyenlow> wrote:

>

> I am looking for suggestions of hospitals or doctors that are well known

> for their treatment of PID. Recently my daugher was diagnosed with CVID

> and we are going to be starting IVIG. What are the best hospitals for

> immune deficiency treatment and research? I was searching on line and

> came across Cincinnati Children's Hospital. Anyone know anything about

> them? We would just like get a second opinion on all of this.

>

> Thanks,

>

> Stacey

>

July 5, 2009

Dr. Filipovich and Dr. Bleesing at Cincinatti Children's are known for their

expertise. Dr. Cunningham-Rundles at NY Mt Sinai and there are a couple of

doctors in Texas and California UCLA-Stanford. If you are wanting another

opinion you would be best served by getting it before you start IVIG treatment.

The results of the opinion become skewed once the infusions are introduced. THe

workup is more reflective of the donors antibodies and function than the

patient. Also start now keeping a symptom log and try and go back and make a

chronological diary of illnesses and surgeries and things that have been done up

to this date.

Even though you will have the records from your current doctor to send to a

second opinion doctor it still helps to have your perspective on what you though

influenced the disease so far and what problems have happened.

Ursula Holleman

mom to (16) and Macey (14)

www.caringbridge.org/visit/maceyholleman

________________________________

>

> From: staceyenlow@...

> Date: Sun, 5 Jul 2009 18:07:14 +0000

> Subject: second opinion

>

> I am looking for suggestions of hospitals or doctors that are well known

>

> for their treatment of PID. Recently my daugher was diagnosed with CVID

>

> and we are going to be starting IVIG. What are the best hospitals for

>

> immune deficiency treatment and research? I was searching on line and

>

> came across Cincinnati Children's Hospital. Anyone know anything about

>

> them? We would just like get a second opinion on all of this.

>

> Thanks,

>

> Stacey

>

July 5, 2009

Stacey,

Mark's immuno is in ville, In and is absolutely incredible. He was

practicing at our children's hospital here in PA, and when he moved to Indiana

we followed him. We make the trip once a year. If you want more info, you can

e-mail me offline.

mom to Mark 8 CVID

>

> Dr. Filipovich and Dr. Bleesing at Cincinatti Children's are known for their

expertise. Dr. Cunningham-Rundles at NY Mt Sinai and there are a couple of

doctors in Texas and California UCLA-Stanford. If you are wanting another

opinion you would be best served by getting it before you start IVIG treatment.

The results of the opinion become skewed once the infusions are introduced. THe

workup is more reflective of the donors antibodies and function than the

patient. Also start now keeping a symptom log and try and go back and make a

chronological diary of illnesses and surgeries and things that have been done up

to this date.

>

> Even though you will have the records from your current doctor to send to a

second opinion doctor it still helps to have your perspective on what you though

influenced the disease so far and what problems have happened.

>

> Ursula Holleman

>

> mom to (16) and Macey (14)

>

> www.caringbridge.org/visit/maceyholleman

>

> ________________________________

> >

> > From: staceyenlow@...

> > Date: Sun, 5 Jul 2009 18:07:14 +0000

> > Subject: second opinion

> >

> > I am looking for suggestions of hospitals or doctors that are well known

> >

> > for their treatment of PID. Recently my daugher was diagnosed with CVID

> >

> > and we are going to be starting IVIG. What are the best hospitals for

> >

> > immune deficiency treatment and research? I was searching on line and

> >

> > came across Cincinnati Children's Hospital. Anyone know anything about

> >

> > them? We would just like get a second opinion on all of this.

> >

> > Thanks,

> >

> > Stacey

> >

>

July 5, 2009

Thanks, Ursula. I'm going to look into Cincinnati Childrens and the Texas

doctors. I did a liitle research on line to try and find where they might be.

Possibly Texas Childrens Hospital in Houston or maybe University of Texas

Southwestern Medical Center in Dallas? Any ideas?

Stacey

________________________________

From: Ursula Holleman <uahollem@...>

Sent: Sunday, July 5, 2009 4:00:28 PM

Subject: RE: second opinion