Author Topic: Question on Traveling to House (or anywhere) for surgery  (Read 8596 times)

v357139

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Question on Traveling to House (or anywhere) for surgery
« on: October 28, 2013, 11:16:20 am »
I am strongly considering House, but I have a concern.  I know they keep you for a few days or so after release from hospital.  Question - What if you need a surgeon on short notice after you get home?  Doc there said he'd find someone local for me.  But some doctors will not even want to touch me because someone else operated on me.  He acknowledged that and said he'd keep looking until he found someone.  But what if I need a surgeon on short notice, which might not leave him enough time to find someone?  Wouldn't I be up the creek without a paddle?  I did see two cases on here where a person had to see a surgeon once he got home.  Is this a realistic concern?  Or is it too unlikely?  Input appreciated.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

arizonajack

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #1 on: October 28, 2013, 12:35:44 pm »
I suggest you line up local resources before committing to House.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

v357139

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #2 on: October 28, 2013, 09:29:21 pm »
I suggest you line up local resources before committing to House.

Sounds logical to me.  I tried that with one doc.  He got insulted.  One of the docs at House said it is very unusual for someone to try line up another surgeon ahead of time.  Has anyone ever lined up local surgical resources ahead of time?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

arizonajack

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #3 on: October 28, 2013, 10:10:27 pm »
I suggest you line up local resources before committing to House.

Sounds logical to me.  I tried that with one doc.  He got insulted.  One of the docs at House said it is very unusual for someone to try line up another surgeon ahead of time.  Has anyone ever lined up local surgical resources ahead of time?

Look at it this way. If you can't get a local Dr to be responsive before your surgery what makes you think you'll get one afterwards? And once the surgeons at House are done with you I seriously doubt that they'll pay much attention to you afterwards, other than maybe "We tried, sorry."

I sent my MRI results to House just like everybody else. I got a call from one of their surgeons and he recommended translab. That didn't sit well with me and I didn't buy his explanation based on my own research. I was leaning towards radiation and then spoke with the specialists at the Barrow Neurological Institute here in Phoenix. The Acoustic Neuroma team there does both surgery and radiation and had no reason to pick one over the other. We went over the pros and cons of each and agreed on Gamma Knife.

I'm not saying that Gamma Knife is the way for you to go. Just illustrating that the surgeons at House might be a little biased in favor of surgery and, if surgery is the way to go for you, that there are very likely neurosurgeons closer to home that can handle the surgery just as well as the surgeons at House.

None of these surgeries are new and nobody has a monopoly on them.


3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

clere

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #4 on: October 29, 2013, 09:02:15 am »
No.. the surgeries are not new and there are numerous Dr's. out there that do them but I am continuously hearing (on this site as well as other places) that experience is the key. The info I have gathered certainly seems to point to HEI having by far the most experience.  ??  Currently I am at the same point as V357139...wanting to stay closer to home but concerned about experience and obviously nervous about the potential outcome.  Also, it appears that once your surgery is done most of the surgeons are "done", and refer you on for whatever follow up you may need. Is that the experience people have had once there treatments are complete? 

v357139

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #5 on: October 29, 2013, 10:39:33 am »
Look at it this way. If you can't get a local Dr to be responsive before your surgery what makes you think you'll get one afterwards? And once the surgeons at House are done with you I seriously doubt that they'll pay much attention to you afterwards, other than maybe "We tried, sorry."

[/quote]

Arizona - Glad yours worked out.  The House docs do follow you by phone - I have seen many posts attesting to that.  I think the local surgeon will only treat me if I have a problem and the House doc asks him to.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #6 on: October 29, 2013, 03:46:08 pm »
People who went to House.  Did you have good follow up with your surgeons once you got home?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

rupert

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #7 on: October 29, 2013, 06:59:39 pm »
Most people have to travel at least some distance for AN surgery.  Mostly preformed in the bigger cities.  I know my nearest hospital for AN surgery would have been a 3 1/2 hour drive.  You can be on a plane and be in LA from almost anywhere in 5 - 8 hours if necessary. That's one way to look at it.  My local ENT offered to  help with any follow up problems like removing stitches or treating an infection, pain etc.  The only thing that you would probably need another surgery for would be a CSF leak and a few hour flight wouldn't be a problem.

v357139

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #8 on: October 29, 2013, 08:04:58 pm »
That is very reassuring.  Thank you.  Like to hear more like that from people out there.  I need it!!!!
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #9 on: October 29, 2013, 08:07:28 pm »
So with CSF leaks you usually have some time?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

LakeErie

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #10 on: October 29, 2013, 08:41:29 pm »
I had a CSF leak through my nostril that started 2 days after surgery. Leaks can also start in the incision.
Most CSF leaks are first treated with conservative measures. In my case the surgeon advised doing nothing and in two weeks the leak stopped on its own.
If leaks persist a lumbar tap is used to reduce fluid volume and lower the pressure at the point of the leak allowing the area to heal. If that fails, a lumbar drain is used in hospital and bed rest for several days often works. Once conservative measures do not work reoperation is possible. My surgeon's record using conservative measures was very high.
So to answer your question, as long as the leak is not an emergent situation, conservative measures can be used and immediate reoperation is not usually necessary.
« Last Edit: October 29, 2013, 08:43:19 pm by LakeErie »
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

CHD63

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #11 on: October 30, 2013, 12:01:00 pm »
I have to agree with rupert.

I never gave it a second thought because I had the confidence that my doctors would have helped me out if I had needed it.  By the way, my first surgery was done at a hospital 5 1/2 hours drive from where I live.  Second surgery was done about the same length of flight time, plus one layover.

If CSF leaks are going to happen, the majority of them occur shortly after surgery.  This is one of the reasons House requires you to stay in the area for 10 days post-op.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

v357139

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #12 on: October 30, 2013, 06:32:48 pm »

So to answer your question, as long as the leak is not an emergent situation, conservative measures can be used and immediate reoperation is not usually necessary.

I know leaks ususally happen right after surgery.  Have you ever heard of an emegent situation csf leak that happened several weeks after surgery?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #13 on: October 30, 2013, 06:34:32 pm »

If CSF leaks are going to happen, the majority of them occur shortly after surgery.  This is one of the reasons House requires you to stay in the area for 10 days post-op.

Clarice

That is good, while I would still be there.  Have you ever heard of a leak happening say a month or months after surgery?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

CHD63

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Re: Question on Traveling to House (or anywhere) for surgery
« Reply #14 on: October 30, 2013, 08:42:06 pm »
To my knowledge, CSF leaks can occur anytime after a person has had surgery, but the majority of them are shortly after surgery, if they are going to happen.

My local neurosurgeon said most small leaks seal over and heal on their own.  He further indicated that it is sometimes very difficult to determine exactly where a leak is occurring ..... and this would be true for any kind of brain or spinal surgery.

Keep in mind that a CSF leak is a relatively rare occurrence.  You read about more of them happening on this forum than in the general public.  There are many, many success stories of people with uncomplicated AN surgeries, who never post on this site.

Clarice



Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011