Author Topic: Dealing with a re-occurance  (Read 4848 times)

swordjock

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Dealing with a re-occurance
« on: August 31, 2015, 09:05:34 am »
Does anyone here have experience going through a re-occurrence of an AN?

I had 3 surgeries to remove one in 2013 and it looks like I'm going to be having surgery again soon. I'm looking for information on dealing with not only the re-occurrence but dealing with the psychological/emotional issues surrounding another surgery (pre and post).

Cheers,
Scott

CHD63

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Re: Dealing with a re-occurance
« Reply #1 on: August 31, 2015, 11:00:06 am »
Hi Scott and welcome to this forum of caring, supportive friends .....

Yes, I had a regrowth of my acoustic neuroma following total surgical removal via retrosigmoid approach.  Three years after the first surgery I had the second surgery for the regrowth via translab approach.  The second surgery was four years ago and my MRI in May of this year showed all to be stable.

I chose my second surgeons very, very carefully because I wanted the best possible outcome.

I will say this, recovery from the second surgery was way easier than the first one, since I had already compensated for the missing vestibular system.

Like you, it was an emotional roller coaster for several years in there, but I can assure you that I have fully recovered now, but with some "new normals" in place.

Let us know if you have further questions.

Thoughts and prayers.

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

AlabamaDonna

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Re: Dealing with a re-occurance
« Reply #2 on: May 02, 2019, 08:12:54 pm »
Dear CHD63,
I read with great interest your story about having several surgeries. May I ask which doctor performed the second procedure at Duke? Which neurosurgical team did you think was best?
I just saw Dr. Fukushima and plan to have him operate on me but also talked to Dr. Friedman, who impressed me. I'm wondering if one is better than the other.
AlabamaDonna
Diagnosed after sudden hearing loss at age 57
MRI November, 2018 1.7 cm
Steroids restored most hearing; ringing in ear, headaches, tingling on tongue, lips, fatigue, memory loss..
MRI in April, 2019 2.1 cm
Watch & Worry

CHD63

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Re: Dealing with a re-occurance
« Reply #3 on: May 03, 2019, 07:28:22 am »
Hi AlabamaDonna .....

My first brain surgery, almost 25 years ago, was done at UPMC in Pittsburgh for decompression of pressure on the trigeminal nerve, not an AN.  Eleven years ago my first AN surgery was done by Dr. Fukushima at Duke.  My second AN surgery (for the regrowth of my AN) was done eight years ago by Drs. Friedman and Schwartz in CA.

Dr. Fukushima is in his late 70s in age now, just so you know.

For me, if I have any further problems AN related, I will always go back to Dr. Friedman, who, as you know, is now at UC San Diego.  Dr. Friedman still orders my follow-up MRIs, which are then sent to him for evaluation.

For what it is worth, flying to CA from the East Coast was a non-issue and I had zero problems.  While still in LA, nine days post-op I was walking around downtown LA with friends sightseeing.

As for which doctor is better, that is a subjective question/answer.  Both of the doctors you mentioned have done hundreds of AN surgeries.  I do not know how you could see any statistics on outcomes.  Even I cannot compare them because one did my first surgery and one did the second.  In most circumstances the first surgery would normally be a longer recovery anyway, so .....

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

notaclone13

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Re: Dealing with a re-occurance
« Reply #4 on: May 03, 2019, 07:58:00 am »
One has to consider that it is not just the surgeon that counts, it is the whole team. From what I have read on the forum, Friedman has assembled a highly experienced team that routinely work together and function like a well oiled machine. It seems as if whenever someone has a problem after surgery elsewhere, they go to Friedman next time around. I have not read many posts about people that had surgery at Duke, although I know it is a fine hospital. I think the age of the surgeon is also a factor. If Fukushima is near 70, it does not seem likely to me that he will actually perform the surgery, but perhaps supervise? Did you talk about his team?


jami

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Re: Dealing with a re-occurance
« Reply #5 on: May 03, 2019, 08:35:05 pm »
HI,

I saw Drs Ewend and O'Connell at UNC Chapel Hill (for the NC connection).

The surgery was mid august, but 6 month MRI showed some most likely growth on the bit of tumor that remained. As frustrating as that is, when speaking with them they were so supportive and open as we made the surgery vs radiationdecisions, and the fact that the tumor was very sticky with respect to my facial nerve. (CK was last week)

My brother is an eye surgeon who speaks the language, and also spent time with Dr Ewand and O'Connell; we all loved them.

Jami
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment

turbomom

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Re: Dealing with a re-occurance
« Reply #6 on: May 29, 2019, 02:48:17 pm »
Hi AlabamaDonna,
Dr. Fukushima did my AN removal 10 years ago. I cannot say enough about the staff and his team of helpers at Duke Raleigh Hospital. Dr. Fukushima salvaged some of my hearing, all my facial nerve and all my balance issues (which I did not have any problems with prior to surgery) returned to normal about 3 months post surgery. As in any surgery, it is important to find the surgeon that you feel confident with and that makes you feel at ease. I wish you the best in finding the surgeon that matches your goals during this challenging time. Do as must research as possible; as that is what I did and would still do it the same way today. Keep us posted.
Lisa :)
tinnitus, mild hearing loss, occasional light-headiness, rare imbalance. Diagnosed on 07/09; 14x9x8mm intra and extra canalicular of left ear. Repeat MRI on 1/15/10...waiting for radiologist to read, but on quick review little growth shown.