Re: surgery complications when you don't live in NY

[Guest guest]

Hello,

I live in Ohio,last year I opted to go to NY for further treatments

of my complex case.I had 5 previous operations in Ohio for

acm,hydro,sm.

I had my 6th operation in NY in June2002.I had decided before hand I

was going to stay in NY two weeks after my operation to make sure

things was fine.I think about a week after operation I had a bright

green drainage.I had to go back into the OR same day to have a

cleaning done.It was fortunate I was in NY in rehab still cause if

not I would have had to travel again.

This is one avenue you can consider staying over a few weeks if that

is a option for you as it was for me.

Tarkeshia

[Guest guest]

Hello,

I live in Ohio,last year I opted to go to NY for further treatments

of my complex case.I had 5 previous operations in Ohio for

acm,hydro,sm.

I had my 6th operation in NY in June2002.I had decided before hand I

was going to stay in NY two weeks after my operation to make sure

things was fine.I think about a week after operation I had a bright

green drainage.I had to go back into the OR same day to have a

cleaning done.It was fortunate I was in NY in rehab still cause if

not I would have had to travel again.

This is one avenue you can consider staying over a few weeks if that

is a option for you as it was for me.

Tarkeshia

[Guest guest]

> Hi Stacie,

I live in NC and I had my surgery local and I had complications

and my doctor had preformed many surgeries just like mine also. So my

advice to you is go where you feel comfortable having your

surgery. You have to remember this is your decision and not some

doctors. I wish you the best of luck with whatever decision you

make. Take care.

>

> Date: 2003/04/15 Tue PM 05:53:59 EDT

> To: chiari

> Subject: surgery complications when you don't live in NY

>

> Hi, everyone. I read all of the messages everyone posts but don't

> really ever post anything. I need some help right now. I live in

> Kentucky and have seen several neurosurgeons here. I have an

> appointment with Dr. Bolognese in NY next month. But several

> neurosurgeons here are kind of scaring me about opting to go to NY

> for surgery. They have told me that I should have the surgery here

> because it would be really bad if I have complications and am that

> far away from the doctors when I return home. I am so confused and

> feel like I am on a total roller coaster ride. The nsg here has done

> over 100 of these surgeries and assures me that he thinks mine would

> be successful. I had pretty much resigned myself to going to NY

> because I feel like I can get the best care there. But now the

> doctors here have scared me. I'm desparate to do something. I just

> don't know what to do. Should I go on to NY? Does anyone that lives

> far from NY but had the surgery there, have any advice? Thank you all

> for your advice in advance. Also, I appreciate all of you and the

> support I get from reading your posts!

>

> Stacie

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

> Hi Stacie,

I live in NC and I had my surgery local and I had complications

and my doctor had preformed many surgeries just like mine also. So my

advice to you is go where you feel comfortable having your

surgery. You have to remember this is your decision and not some

doctors. I wish you the best of luck with whatever decision you

make. Take care.

>

> Date: 2003/04/15 Tue PM 05:53:59 EDT

> To: chiari

> Subject: surgery complications when you don't live in NY

>

> Hi, everyone. I read all of the messages everyone posts but don't

> really ever post anything. I need some help right now. I live in

> Kentucky and have seen several neurosurgeons here. I have an

> appointment with Dr. Bolognese in NY next month. But several

> neurosurgeons here are kind of scaring me about opting to go to NY

> for surgery. They have told me that I should have the surgery here

> because it would be really bad if I have complications and am that

> far away from the doctors when I return home. I am so confused and

> feel like I am on a total roller coaster ride. The nsg here has done

> over 100 of these surgeries and assures me that he thinks mine would

> be successful. I had pretty much resigned myself to going to NY

> because I feel like I can get the best care there. But now the

> doctors here have scared me. I'm desparate to do something. I just

> don't know what to do. Should I go on to NY? Does anyone that lives

> far from NY but had the surgery there, have any advice? Thank you all

> for your advice in advance. Also, I appreciate all of you and the

> support I get from reading your posts!

>

> Stacie

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

> Hi Stacie,

I live in NC and I had my surgery local and I had complications

and my doctor had preformed many surgeries just like mine also. So my

advice to you is go where you feel comfortable having your

surgery. You have to remember this is your decision and not some

doctors. I wish you the best of luck with whatever decision you

make. Take care.

>

> Date: 2003/04/15 Tue PM 05:53:59 EDT

> To: chiari

> Subject: surgery complications when you don't live in NY

>

> Hi, everyone. I read all of the messages everyone posts but don't

> really ever post anything. I need some help right now. I live in

> Kentucky and have seen several neurosurgeons here. I have an

> appointment with Dr. Bolognese in NY next month. But several

> neurosurgeons here are kind of scaring me about opting to go to NY

> for surgery. They have told me that I should have the surgery here

> because it would be really bad if I have complications and am that

> far away from the doctors when I return home. I am so confused and

> feel like I am on a total roller coaster ride. The nsg here has done

> over 100 of these surgeries and assures me that he thinks mine would

> be successful. I had pretty much resigned myself to going to NY

> because I feel like I can get the best care there. But now the

> doctors here have scared me. I'm desparate to do something. I just

> don't know what to do. Should I go on to NY? Does anyone that lives

> far from NY but had the surgery there, have any advice? Thank you all

> for your advice in advance. Also, I appreciate all of you and the

> support I get from reading your posts!

>

> Stacie

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

This is an issue I've been thinking about myself......worse so for me

because I'm in Australia..... I'd appreciate any responses people can

send on this issue.

Thanks

Beth in Australia

No official Chiari Diagnosis yet, no surgery

My Chiari Story & View my MRI scans

http://users.tpg.com.au/talie/health.html

-----Original Message-----

Hi, everyone. I read all of the messages everyone posts but don't

really ever post anything. I need some help right now. I live in

Kentucky and have seen several neurosurgeons here. I have an

appointment with Dr. Bolognese in NY next month. But several

neurosurgeons here are kind of scaring me about opting to go to NY

for surgery. They have told me that I should have the surgery here

because it would be really bad if I have complications and am that

far away from the doctors when I return home. I am so confused and

feel like I am on a total roller coaster ride. The nsg here has done

over 100 of these surgeries and assures me that he thinks mine would

be successful. I had pretty much resigned myself to going to NY

because I feel like I can get the best care there. But now the

doctors here have scared me. I'm desparate to do something. I just

don't know what to do. Should I go on to NY? Does anyone that lives

far from NY but had the surgery there, have any advice? Thank you all

for your advice in advance. Also, I appreciate all of you and the

support I get from reading your posts!

Stacie

[Guest guest]

This is an issue I've been thinking about myself......worse so for me

because I'm in Australia..... I'd appreciate any responses people can

send on this issue.

Thanks

Beth in Australia

No official Chiari Diagnosis yet, no surgery

My Chiari Story & View my MRI scans

http://users.tpg.com.au/talie/health.html

-----Original Message-----

Hi, everyone. I read all of the messages everyone posts but don't

really ever post anything. I need some help right now. I live in

Kentucky and have seen several neurosurgeons here. I have an

appointment with Dr. Bolognese in NY next month. But several

neurosurgeons here are kind of scaring me about opting to go to NY

for surgery. They have told me that I should have the surgery here

because it would be really bad if I have complications and am that

far away from the doctors when I return home. I am so confused and

feel like I am on a total roller coaster ride. The nsg here has done

over 100 of these surgeries and assures me that he thinks mine would

be successful. I had pretty much resigned myself to going to NY

because I feel like I can get the best care there. But now the

doctors here have scared me. I'm desparate to do something. I just

don't know what to do. Should I go on to NY? Does anyone that lives

far from NY but had the surgery there, have any advice? Thank you all

for your advice in advance. Also, I appreciate all of you and the

support I get from reading your posts!

Stacie

[Guest guest]

Me also as I cannot get a straight answer from several docs. one who is

particular doesn't want anyone to get a second opinion.

Ann in Aussie

Beth in Australia wrote:

> This is an issue I've been thinking about myself......worse so for me

> because I'm in Australia..... I'd appreciate any responses people can

> send on this issue.

>

> Thanks

>

> Beth in Australia

> No official Chiari Diagnosis yet, no surgery

> My Chiari Story & View my MRI scans

> http://users.tpg.com.au/talie/health.html

>

> -----Original Message-----

> Hi, everyone. I read all of the messages everyone posts but don't

> really ever post anything. I need some help right now. I live in

> Kentucky and have seen several neurosurgeons here. I have an

> appointment with Dr. Bolognese in NY next month. But several

> neurosurgeons here are kind of scaring me about opting to go to NY

> for surgery. They have told me that I should have the surgery here

> because it would be really bad if I have complications and am that

> far away from the doctors when I return home. I am so confused and

> feel like I am on a total roller coaster ride. The nsg here has done

> over 100 of these surgeries and assures me that he thinks mine would

> be successful. I had pretty much resigned myself to going to NY

> because I feel like I can get the best care there. But now the

> doctors here have scared me. I'm desparate to do something. I just

> don't know what to do. Should I go on to NY? Does anyone that lives

> far from NY but had the surgery there, have any advice? Thank you all

> for your advice in advance. Also, I appreciate all of you and the

> support I get from reading your posts!

>

> Stacie

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

Me also as I cannot get a straight answer from several docs. one who is

particular doesn't want anyone to get a second opinion.

Ann in Aussie

Beth in Australia wrote:

> This is an issue I've been thinking about myself......worse so for me

> because I'm in Australia..... I'd appreciate any responses people can

> send on this issue.

>

> Thanks

>

> Beth in Australia

> No official Chiari Diagnosis yet, no surgery

> My Chiari Story & View my MRI scans

> http://users.tpg.com.au/talie/health.html

>

> -----Original Message-----

> Hi, everyone. I read all of the messages everyone posts but don't

> really ever post anything. I need some help right now. I live in

> Kentucky and have seen several neurosurgeons here. I have an

> appointment with Dr. Bolognese in NY next month. But several

> neurosurgeons here are kind of scaring me about opting to go to NY

> for surgery. They have told me that I should have the surgery here

> because it would be really bad if I have complications and am that

> far away from the doctors when I return home. I am so confused and

> feel like I am on a total roller coaster ride. The nsg here has done

> over 100 of these surgeries and assures me that he thinks mine would

> be successful. I had pretty much resigned myself to going to NY

> because I feel like I can get the best care there. But now the

> doctors here have scared me. I'm desparate to do something. I just

> don't know what to do. Should I go on to NY? Does anyone that lives

> far from NY but had the surgery there, have any advice? Thank you all

> for your advice in advance. Also, I appreciate all of you and the

> support I get from reading your posts!

>

> Stacie

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

Me also as I cannot get a straight answer from several docs. one who is

particular doesn't want anyone to get a second opinion.

Ann in Aussie

Beth in Australia wrote:

> This is an issue I've been thinking about myself......worse so for me

> because I'm in Australia..... I'd appreciate any responses people can

> send on this issue.

>

> Thanks

>

> Beth in Australia

> No official Chiari Diagnosis yet, no surgery

> My Chiari Story & View my MRI scans

> http://users.tpg.com.au/talie/health.html

>

> -----Original Message-----

> Hi, everyone. I read all of the messages everyone posts but don't

> really ever post anything. I need some help right now. I live in

> Kentucky and have seen several neurosurgeons here. I have an

> appointment with Dr. Bolognese in NY next month. But several

> neurosurgeons here are kind of scaring me about opting to go to NY

> for surgery. They have told me that I should have the surgery here

> because it would be really bad if I have complications and am that

> far away from the doctors when I return home. I am so confused and

> feel like I am on a total roller coaster ride. The nsg here has done

> over 100 of these surgeries and assures me that he thinks mine would

> be successful. I had pretty much resigned myself to going to NY

> because I feel like I can get the best care there. But now the

> doctors here have scared me. I'm desparate to do something. I just

> don't know what to do. Should I go on to NY? Does anyone that lives

> far from NY but had the surgery there, have any advice? Thank you all

> for your advice in advance. Also, I appreciate all of you and the

> support I get from reading your posts!

>

> Stacie

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

In a message dated 4/15/2003 5:58:39 PM Eastern Daylight Time,

stacie.otto@... writes:

> They have told me that I should have the surgery here

> because it would be really bad if I have complications and am that

> far away from the doctors when I return home. I am so confused and

> feel like I am on a total roller coaster ride. The nsg here has done

> over 100 of these surgeries and assures me that he thinks mine would

> be successful. I had pretty much resigned myself to going to NY

> because I feel like I can get the best care there. But now the

> doctors here have scared me. I'm desparate to do something. I just

> don't know what to do. Should I go on to NY? Does anyone that lives

> far from NY but had the surgery there, have any advice?

Stacie,

I had two operations with a surgeon locally in 2001. I had an extremely

complicated recovery with frequent hospital admissions and emergency room

trips. Living 10 minutes away from Emory University hospital was definitely a

plus, but having my surgery there was not. Like you, I had a surgeon who had

performed well over 100 decompressions and was assured that my operation

would be an easy recovery and very successful. Needless to say, it was not.

The truth of the matter is that almost all of the decompressions my first

neurosurgeon were quite successful and weren't flawed with complications. It

was for this reason that we felt comfortable with him operating on me.

I'm pointing this out for many reasons. I do believe that many non chiari

experts are competent enough to perform a chiari decompression successfully.

I simply was not one of these cases. The main difference to me, between a

chiari expert and a non chiari expert, besides experience, is that they know

what to look for. They know to look for other conditions that are or aren't

related to ACM, they are able to decide what it is that is causing the most

trouble, and they are able to decide which surgical approach would be the

best course for the patient. None of the above were done correctly for me in

2001.

I just had another round of surgeries in NY during March. I live in Atlanta.

I was very afraid of having an operation in another state, especially after

having such a rough recovery with ER trips every week after the first

surgeries. I spent almost 3 weeks in the hospital (I didn't have just a

decompression) and flew home less than 24 hours after my discharge. Guess

what? I had so much more done to me surgically this time than the last and my

recovery has been quite easy compared to the last. More than anything I think

it is because these guys knew what they were doing, they did what needed to

be done, and they didn't complicate my situation or cause more problems than

I had to begin with.

So Stacie, I totally understand your fear, but I will tell you personally,

after having been through surgery locally and away from home, my bigger fear

than being long distance, is ever having another surgeon besides Drs.

Bolognese or Milhorat touch me again! It's not going to happen, EVER. I

learned the hard way that my case is one that needs to be addressed by the

experts.

I only wish that I had known this before I had my first two surgeries.

Perhaps if I had I would have only needed one surgery as opposed to the ones

I've already had and the ones I need in the future. But like I said before, I

do think that some people have cases that are simple enough to be treated by

a local surgeon and I think that some surgeons, who aren't experts, are

qualified enough to do a decompression. 

Just my opinion, but go to NY. It is scary traveling home, but I know that if

I were to have any sort of major problem this time, which I haven't, I can

get back to NY one way or another. They are very accessible and kind with

your concerns. I have stayed in touch with both Dr. Bolognese and Kim since

I've been home and they do keep an eye on things for you. They're all great

up there, what else can I say??

I think it is worth everyone's time and effort to have an evaluation by a

chiari expert. They will be able to give you a better understanding of your

situation and a complete and full evaluation. They will also be able to tell

you if you have a situation that can be handled by your local surgeon. Like I

said before, I'm a lot less scared of being far away from experts who know

what they are doing than being close by and letting someone operate on me who

can't take care of me as well. Hope this helps. Good luck and take care.

Joanna/Atlanta (17 years)

You can view my story at: (not current... needs updating)

http://www.pressenter.com/~chip/joanna.htmhttp://www.pressenter.com/~chi\

p/joanna.htm

Chiari 1, Syrinx C1-T7, Intracranial Hypertension (PTC), Ehlers-Danlos IV

Syndrome, Neurocardiogenic Syncope, retroflexed odontoid, cervical

instability, bulging discs, and other *pleasant* stuff )

-VP Shunt- 3/20/03

-Craniectomy, duraplasty, meningocele repair, cauterization of cerebellar

tonsils, and cranioplasty (titanium mesh plate)- 3/11/03

-Invasive Cervical Traction- 3/10/03

-Surgical debridement of staph infection and dura exploration- 9/8/01

-Decompression, laminectomy, duraplasty- 7/27/01

Check out the Wacma Kids group at: http://groups.yahoo.com/group/wacmakids/http://groups.yahoo.com/group/wa\

cmakids/

I can also be reached at Joanna@... or KidsAsk@...

" To accomplish great things, we must not only act, but also dream; not only

plan, but also believe. " -Anatole France