Author Topic: who has had surgery done twice for their AN?  (Read 4385 times)

tenai98

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who has had surgery done twice for their AN?
« on: May 21, 2016, 02:17:54 pm »
Had translab 7 yrs ago.   Booger has now regrown :(...anyone have surgery a second time?  Do they go through the same cut?  Seen that the hole already there, is the surgery as long as first?  I will be seeing my neurosurgeon June 1, but he leans more towards radiation.  I am having a hard time with my new symptoms.  Headaches, pressure inside head.  Feels like I"m drunk all the time.  I'm wondering if debulking and then radiation.   I know it can take about 6 months for tumour to start to die, but I dont think I can live like this for 6 months.  I cant work. I teach driver education, therefore, I need my fulll attention and I cant.  I manage to do about 3 hours and then come home and take a tylenol 3.   So basically here are my questions
1) is surgery as long second time around?
2) is it easier to recover?
3)Do they need to drill another hole?
4)is another fat graft done?
I am thinking this is the route for me.  Debulk and then radiation as one the original plan but we didnt have cyberknife available at that point and I agreed with the specialist to let it be and see what happens.  Then when it did start to grow, he suggested it was just scar tissue.  Well from last August/2015 it was 20X14X11....now its 28X18X22mm....quite a growth spurt..
tenai
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

CHD63

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Re: who has had surgery done twice for their AN?
« Reply #1 on: May 21, 2016, 02:29:23 pm »
Hi tenai .....

You may already know my story, but here it is again, if you do not.

I had retrosigmoid approach surgery for my 2.6 cm AN eight years ago.  I was told it was removed "in toto."  Initial post-op MRIs showed "scar tissue," which, like yours took a growth spurt.  It was removed a second time via translab approach five years ago. (Different doctors, different medical facilities, different states.) So far my follow-up MRIs have been stable.  I had no radiation at any time due to massive doses of radium to my head as a kid.

Dr. Schwartz explained that on second surgeries they want a clean plane to approach the tumor, hence translab for me the second time.  I had no fat graft the first time, but did the second time.

1) The second surgery was about the same length of time as the first, around five hours.
2) It was more difficult to remove because of the surrounding scar tissue.
3) Yes, they drilled a different hole.
4) Fat graft was done.

Much depends upon which direction/location of the regrowth as to the neurosurgeon's choice for approach, I would think.

Many thoughts and prayers for right answers from experts in the field!

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

Kathleen_Mc

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Re: who has had surgery done twice for their AN?
« Reply #2 on: May 31, 2016, 03:09:26 am »
Hi
I too have had surgery twice for the same AN.
First time was a 15 hour OR, lost 7-10th nerves inclusive in that and was told it was all removed. 7 years post op I was told what was showing on the MRI was scar tissue and the next year it grew!......scar tissue NOT!.....regrowth. I had that surgically removed as well, different approach taken.....different doctor and a much shorter OR and recovery time, shorter hospital stay.....had already lost my balance, hearing  etc  the first time so it was just recovering from the surgery itself
I did not have a fat graft the first time but did the second time. Due to the different approach the second time I had another "crack" to the skull so I have two suture line cracks to the skull and one "burr hole" but who cares...hair hides them.
Take care
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

tenai98

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Re: who has had surgery done twice for their AN?
« Reply #3 on: May 31, 2016, 06:35:11 am »
Kathleen_Mc.

I see you are from Ontario as I am.  Where did you have your surgeries.   Since writing this post, the pressure in the back of my head have subside.  that was my main concern.  So now at this point, I will just take the CK and go from there.  It was my preferred method of treatment to begin with back when I was first diagnosed, but CK was not available here in Ontario.  It may have been in Montreal at that time though.  Now that it is here in Ottawa, yeaaaa, time for CK
Joann
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Kathleen_Mc

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Re: who has had surgery done twice for their AN?
« Reply #4 on: June 18, 2016, 04:04:45 am »
Joann
I live about an hour east of Toronto
First OR was at Toronto Western, second at Sunnybrooke
I would have gone with gamma knife if it had been available the first time around ( and if my tumor had been found in a small enough state for gamma knife, which it wasn't)
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

LakeErie

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Re: who has had surgery done twice for their AN?
« Reply #5 on: June 18, 2016, 10:34:29 am »
Have had just one surgery, but my retrosigmoid approach opening was closed with a titanium plate and screws, not the skull flap itself. I do not know if this standard approach or not. The plate can be removed to access the CP Angle if necessary.
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