Author Topic: Complications developed after surgery and who would I see  (Read 2485 times)

Abetpds

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Complications developed after surgery and who would I see
« on: May 07, 2018, 06:34:04 pm »
I am planning to travel from GA to CA for surgery for my AN.  Concerned about who I would see if complications develop after I return home.  I'd like some inputs into
1.  How many developed complications needing a doctor after they returned home
2. What kind of complications can develop
3. Will a local neurosurgeon be willing to work with another doctor's patient?
4. How long do you stay in the hospital after surgery and when do they release you to go home?

Any other information would be much appreciated.
Thanks
Regina

CHD63

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Re: Complications developed after surgery and who would I see
« Reply #1 on: May 07, 2018, 07:29:49 pm »
Hi Regina .....

I flew to CA from the East Coast for my surgery 7 years ago and it was the best decision I could have made.

1.  I had no complications but I was assured that in the unlikely event I did, my CA docs would put me in touch with a local doc to check me.
2.  The main complication that can develop is a CSF leak.  However, a CSF leak usually occurs within the first week post-op if it is going to happen.  It is a rare complication.
3.  If it is an emergency situation, a neurosurgeon would be called to evaluate.
4.  I was in the hospital for four days, walking around LA on day 9 post op, flying home on day 13 post op.  Most doctors like you to stay in the vicinity for at least a week following release from the hospital.  I opted to stay an additional few days just to be sure.

Due to weather issues, resulting in flight delays, I was extremely tired upon returning home.  A few good hours of sleep cured that and all was well within a couple of days.

Hope that helps.  Best wishes, 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

Natalie29

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Re: Complications developed after surgery and who would I see
« Reply #2 on: May 09, 2018, 02:38:56 pm »
Hi Regina,

I flew to California last year for a surgery from overseas (very long flight), and am very happy with the outcomes! (this was my second surgery, first being 9 years ago in my home country).
Stayed in the hospital for three days.
Stayed in CA almost three weeks after surgery without complications. Was cleared to fly earlier but prefered to stay longer for reassurance before flying back home. The flight home went fine.
A week or so after returning home, had a concerning runny nose, and was instructed by the surgeon to go to the ER to rule out CSF leak (was told it is very rare at this stage). I called different hospitals to check whether they perform the test. At the ER the neurosurgeon on call did a beta transferrin test which detects CSF in body fluids, which returned negative after several days. 

Hope this helps, and hope everything goes smoothly with surgery.

Kind wishes,
Natalie
2007-diagnosed at 19y.
2009-retrosigmoid surgery Israel, only half removed. Postoperative dizziness, facial weakness (resolved), chronic headaches.
2016-residual double in size.
February 28th 2017-translabyrinthine surgery (USC Dr. Friedman and Dr. Giannotta) diagnosed as FNS-great outcome!!!

Patti

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Re: Complications developed after surgery and who would I see
« Reply #3 on: May 11, 2018, 07:19:37 am »
Regina- I am glad you decided on surgery due to it's size.  My complications were rare.  Patti
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

Abetpds

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Re: Complications developed after surgery and who would I see
« Reply #4 on: May 18, 2018, 09:07:55 am »
Thank you all so much for your inputs.  You have addressed my concerns.
Wondering if anybody has had surgery done at Michigan Eye and Ear  with a Dr. Babu?  In talking to him about wanting a team of doctors who have had a lot of experience,  he talked very highly about Friedman/Schwartz team, but said that he jokes with them as to who did the most number of surgeries.   I am considering visiting him too. MI is attractive since my sister lives there and I can stay with her for months for post op care if needed.

leapyrtwins

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Re: Complications developed after surgery and who would I see
« Reply #5 on: June 08, 2018, 11:05:29 am »
Although people like to say "HEI" - House Ear Institute and the new group with Friedman (also in CA) are the "best", there is really no reason to travel to California for AN surgery.

There are a lot of other places where people have had just as good an outcome - or, dare I say it? - even better.

I had surgery in Illinois with a phenomenal doc and my experience and outcome was excellent.  I also can't imagine traveling from California post op when it wasn't very pleasant just to travel 35 minutes to my home. 

There are a lot of great choices out there - Michigan Ear Institute is one, the docs in NJ are another, etc., etc.,

Just make sure you have a doc who has experience.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Abetpds

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Re: Complications developed after surgery and who would I see
« Reply #6 on: July 23, 2018, 08:55:47 am »
Hi All
I am home now after surgery on July 26th.  Also got the BAHA implanted. 
I stayed in San Diego for 20 days after surgery to make sure that there would be no complications. Started Therapy there as well and was able to walk well after the 4th day.  However, the headaches are so bad.  Have throbbing headaches whenever I stand up from sitting and it just stops me cold. At other times I get shooting pain from my neck into my head.  Sometimes I feel like my left ear is going to burst with the pressure. It is hard to lie down. The doctors do not know why I have so much pain.  I was under the impression that  the pain would last 3 weeks but on reading other Post surgery comments, I realize that many are having the same headaches I am having and have had it for years. It is so debilitating that I cannot even move sometimes.  I used to lead a very active life - and cannot believe that I'll not be able to do that anymore. Wish I had decided to W&W some more instead of caving in to pressure from family to remove the tumor.
Rregina

ANSydney

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Re: Complications developed after surgery and who would I see
« Reply #7 on: July 23, 2018, 05:38:47 pm »
Hi Regina, When you say you have throbbing headaches whenever you stand up, is it whenever you first stand up or while ever you stand up. That is, if you wait 10 minutes after standing up, does the headache become better?

Abetpds

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Re: Complications developed after surgery and who would I see
« Reply #8 on: July 24, 2018, 02:58:01 pm »
Yes AN Sydney, When I stand up the pain is really bad -- I cannot move -- but after about 10 minutes it starts subsiding.

ANSydney

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Re: Complications developed after surgery and who would I see
« Reply #9 on: July 25, 2018, 05:14:52 pm »
Regina, we're on to something. I haven't had treatment and have a similar situation about when I stand up after sitting for a while balance is not all that good. After 5 to 10 minutes, it's back to normal.

This started only in about February when I started sleeping less. Nothing to do with the tumor, but I think getting enough sleep is a big factor.

Things get temporarily worse when I stand up, but only sometimes. I'm been trying to work out what scenarios are worse. It all started when I got off the bus in the afternoon. Was it altitude change. Checked that and no. Was it vibration from travel that cause gunk within the cerebrospinal fluid to build up? Is it less sleep? Is it lack of hydration? These last three are still under investigation.


 


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