Re: Questions for First Appt with Surgeon??

[Guest guest]

Hi Donna, here, from Restoule Ontario, formally of Toronto. I spoke to you when you first joined the group. My son, 17, and I, 41 both have BPES and we are patients of Dr. Pashby's. Actually we both have an appointment with him on August 29. We are done with surgeries but go every couple of years for general check ups with him. Dr. Pashby is very easy to talk to so do not be nervous. When he has called me on the phone or anything he calls himself Bob, so he has no airs about him. He does not put himself on any kind of pedistals. He is excellent with children and does his surgeries out of Hospital for Sick Children in Toronto. I think my son still, at 17, looks forward to the lolly pops he has always been given by Dr. Pashby. If there are any questions you have from me or that you would like me to ask him, since my appointment is before yours, just let me know. Take

care, newhavenmama <newhavenmama@...> wrote: Hi all,I am not a regular poster here but do follow you and have been since our daughter, Halle, was diagnosed with BPES in Sept 2004. She is now 26 mos old and doing wonderfully! We are from PEI, Canada.We have an appt scheduled with Dr. Pasby in Toronto on Sept 25th for consultation. I am both thrilled to get 'the ball rolling' and scared of what lies ahead with surgeries, recoveries, outcomes, etc. I thought I had read on

this site once before a list of questions that should be asked at the first appt with the surgeon...I am so nervous that I will forget to ask something or think of it afterwards!Do any of you know the list I am talking about? If not, are there any questions you can think of that I should be asking?I know I've come across Dr. Pashby's name on this site as well...are there any of you out there who are patients or have children who are patients of his? What are your comments, views on him? Thank you so much for any help or info you can give me!Cheers,Donna

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Hi !

I DO remember your posts from when I first joined...although I must

say I was in a bit of a stunned stage still trying to digest all the

new information!! I am so relieved to hear that Dr. Pashby is - well

basically a nice guy!! That means so much to me as I am not an

outgoing person and am one to be easily intimidated. I hate doctors

who have a know-it-all/I'm better then you attitude. I know I will

be able to talk more freely to this guy! Do you think it might be

worthwhile to compile a list of questions and send to him before our

appt? Or should we just wing it? I'm just so afraid that we will

travel all this distance only to have me forget to ask him something

and kick myself all the way home! I guess he will let us know what

we need to know. But if you think of anything that I should ask, I'd

appreciate it! Thanks for your reply! Oh - you wouldn't happen to

know the answer to my other question...why I can't seem to post new

photos to my album? It gives me a message saying I do not have those

privileges or something?? I have posted pics before but wanted to

post some current ones. Thanks!!

Cheers,

Donna

> Hi all,

> I am not a regular poster here but do follow you and have been

since

> our daughter, Halle, was diagnosed with BPES in Sept 2004. She is

now

> 26 mos old and doing wonderfully! We are from PEI, Canada.

> We have an appt scheduled with Dr. Pasby in Toronto on Sept 25th

for

> consultation. I am both thrilled to get 'the ball rolling' and

scared

> of what lies ahead with surgeries, recoveries, outcomes, etc.

> I thought I had read on this site once before a list of questions

that

> should be asked at the first appt with the surgeon...I am so

nervous

> that I will forget to ask something or think of it afterwards!

> Do any of you know the list I am talking about? If not, are there

any

> questions you can think of that I should be asking?

> I know I've come across Dr. Pashby's name on this site as

well...are

> there any of you out there who are patients or have children who

are

> patients of his? What are your comments, views on him?

> Thank you so much for any help or info you can give me!

> Cheers,

> Donna

>

>

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

[Guest guest]

Hi Donna,

I just saw your post from earlier this week and saw that you were

from PEI. I'm from Halifax and my son Braydon was just diagnosed. I

was wondering where Halle was diagnosed and if Halifax was an option

for the surgery or if Toronto is where it needs to be done? Do you

know when Halle will be having surgery?

Thanks, Jen

[Guest guest]

Hi Jen!

WOW - I can't believe there is another case of BPES in the Maritimes!

Welcome to the group!

How old is Braydon? I assume he was diagnosed by the geneticist there?

That's who ended up diagnosing Halle. She was 9mos before she was

diagnosed as no one here knew what it was and we do not have a

geneticist on the Island. Dr. Dyack (I think) comes to the Island

twice a year so we saw here when she came. She instantly diagnosed

her. I must say it was both scary and a relief at the same time. They

were wonderful - she and her assitant Jillian. They helped us set up

an appt with a surgeon in Halifax but were told it would be awhile

before we got in to see him. After a few months of not hearing back, I

contacted the geneticists office and we found out the guy had moved

out West to practice!!! No one bothered to phone and tell us! Since

then, I have been on the hunt for a surgeon and after talking to Dr.

Katowitz in Philadelphia, he recommended Dr. Pashby in Toronto or

another surgeon in BC. I had been in touch with a Dr. in Ottawa but

Dr. Katowitz said that Dr. Pashby had more experience working with

children. So that is why we are heading to Toronto! I don't know if

anyone new has arrived in Halifax. But my main concern was finding

someone who had a lot of experience in dealing with cases like this.

We had met with a regular surgeon in Halifax who said he had never

seen a case like this but would be willing to do the operation....NO

THANKS!! I do not want this to be a first-time surgery for someone.

I'd love to hear more about you! Feel free to email me with any

questions you have!

Talk soon,

Donna:)

>

> Hi Donna,

>

> I just saw your post from earlier this week and saw that you were

> from PEI. I'm from Halifax and my son Braydon was just diagnosed. I

> was wondering where Halle was diagnosed and if Halifax was an option

> for the surgery or if Toronto is where it needs to be done? Do you

> know when Halle will be having surgery?

>

> Thanks, Jen

>

[Guest guest]

Hi there, Tonikka from edmonton here, i know this post was meant for someone else but i saw that you had trouble with doctors at one point. i also saw that you may have considered a doctor in B.C. but opted for the Toronto Doc instead. good luck with that .... i hope that he gives you all the answers you need. If for some reason you are unhappy or want a second opinion here in edmonton alberta we have a great surgeon who has done many many surgeries on BPES patients and is quite familiar with BPES. He says its one of his rare specialties. people from all over canada and the States come to him. His name is Dr Royce johnson. if you have any questions or want some info on him just let me know.... anyway i hope Dr pashby is a great help.... dr johnson talks highly of him too. anyway just wanted to let you know there were more options if you feel stuck again.... (let us know how the appointment went )

Tonikka and Chris

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of newhavenmamaSent: August 22, 2006 8:17 AMblepharophimosis Subject: blepharophimosis Re: Questions for First Appt with Surgeon??

Hi Jen!WOW - I can't believe there is another case of BPES in the Maritimes! Welcome to the group!How old is Braydon? I assume he was diagnosed by the geneticist there? That's who ended up diagnosing Halle. She was 9mos before she was diagnosed as no one here knew what it was and we do not have a geneticist on the Island. Dr. Dyack (I think) comes to the Island twice a year so we saw here when she came. She instantly diagnosed her. I must say it was both scary and a relief at the same time. They were wonderful - she and her assitant Jillian. They helped us set up an appt with a surgeon in Halifax but were told it would be awhile before we got in to see him. After a few months of not hearing back, I contacted the geneticists office and we found out the guy had moved out West to practice!!! No one bothered to phone and tell us! Since then, I have been on the hunt for a surgeon and after talking to Dr. Katowitz in Philadelphia, he recommended Dr. Pashby in Toronto or another surgeon in BC. I had been in touch with a Dr. in Ottawa but Dr. Katowitz said that Dr. Pashby had more experience working with children. So that is why we are heading to Toronto! I don't know if anyone new has arrived in Halifax. But my main concern was finding someone who had a lot of experience in dealing with cases like this. We had met with a regular surgeon in Halifax who said he had never seen a case like this but would be willing to do the operation....NO THANKS!! I do not want this to be a first-time surgery for someone.I'd love to hear more about you! Feel free to email me with any questions you have! Talk soon,Donna:)>> Hi Donna, > > I just saw your post from earlier this week and saw that you were> from PEI. I'm from Halifax and my son Braydon was just diagnosed. I> was wondering where Halle was diagnosed and if Halifax was an option> for the surgery or if Toronto is where it needs to be done? Do you> know when Halle will be having surgery?> > Thanks, Jen>

[Guest guest]

Hi Tonikka!

Thanks so much for you post - I really appreciate it! Its so hard to

know when it comes to finding a doctor who is best and how far one

needs to travel to get to the best!! We have friends in Edmonton who

would have loved if we had chosen a surgeon from there! I have come

across Dr. 's name and read very positive things about him. I

am just so nervous about the whole thing...and this is just a

consultation appointment! I will be a wreck when it comes time for

the actual surgery! I guess the fact that this is consultation is a

good thing..if I don't get the answers I want, then I know I will

have the option of pursuing some other Canadian doctors.

Thanks again for your post!

Cheers,

Donna

> >

> > Hi Donna,

> >

> > I just saw your post from earlier this week and saw that you

were

> > from PEI. I'm from Halifax and my son Braydon was just

diagnosed. I

> > was wondering where Halle was diagnosed and if Halifax was an

option

> > for the surgery or if Toronto is where it needs to be done? Do

you

> > know when Halle will be having surgery?

> >

> > Thanks, Jen

> >

>

[Guest guest]

Hi Donna,

We are in Edmonton and have also been really happy with Dr. , but I certainly understand the worry about wanting the best for your little one, we were willing to go ANYWHERE to find the best, we were so blessed to find him here, he really has been wonderful.

I was wondering if you could forward me any info you have about a Dr. in B.C? Is it Vancouver?

Thanks.....

Trish

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of newhavenmamaSent: Tuesday, August 22, 2006 12:12 PMblepharophimosis Subject: blepharophimosis Re: Questions for First Appt with Surgeon??

Hi Tonikka!Thanks so much for you post - I really appreciate it! Its so hard to know when it comes to finding a doctor who is best and how far one needs to travel to get to the best!! We have friends in Edmonton who would have loved if we had chosen a surgeon from there! I have come across Dr. 's name and read very positive things about him. I am just so nervous about the whole thing...and this is just a consultation appointment! I will be a wreck when it comes time for the actual surgery! I guess the fact that this is consultation is a good thing..if I don't get the answers I want, then I know I will have the option of pursuing some other Canadian doctors. Thanks again for your post!Cheers,Donna > >> > Hi Donna,> >> > I just saw your post from earlier this week and saw that you were> > from PEI. I'm from Halifax and my son Braydon was just diagnosed. I> > was wondering where Halle was diagnosed and if Halifax was an option> > for the surgery or if Toronto is where it needs to be done? Do you> > know when Halle will be having surgery?> >> > Thanks, Jen> >>