Author Topic: Regrowth of tumor removed 12 years ago  (Read 4011 times)

gileski

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Regrowth of tumor removed 12 years ago
« on: April 30, 2014, 10:03:37 am »
Looking for treatment options advice.  12 years ago had a 7mm tumor surgically removed at Mass General by Dr. Martuza.  In the last couple of weeks have had intense dizziness symptoms, leading to an MRI on Sunday, which revealed 3mm of new growth.  My Wife and I own a B & B and are about to enter busy season.  I love to downhill ski and ride motorcycles, so continuing dizziness is not an option. 

As i recall from 12 years ago, re-surgery was not an option, due to the difficulty of dealing with scar tissue.  So, I'm thinking radiation (gamma knife?), and I really don't want, and can't handle a year of recovery again at age 64, and as an inn-keeper.  One of the reasons I did not do radio surgery last time, was that the physician who ran that unit at Mass General could not respond to the question of resolution of dizziness symptoms.  I have very little hearing left in my right ear anyway, so that's not so much of an issue for me.

Would like to hear from folks who have had regrowth and how they dealt with the options.

Thanks!
Scott

CHD63

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Re: Regrowth of tumor removed 12 years ago
« Reply #1 on: April 30, 2014, 12:21:14 pm »
Hi Scott .....

I also had regrowth of a surgically removed tumor.  However, mine regrew to 1.3 cm in three years so I really did not have much option to wait and watch.  My first removal was via retrosigmoid approach (which seems to be more prone to have regrowth later because the surgeon cannot see all the way to the cochlea from that angle).  It was done that way for hearing preservation, which was partially successful.

Because of my personal history of large doses of radium to my head as a kid, I really was not anxious for treating the regrowth with radiation.  Therefore, at the recommendation of Dr. Friedman, the regrowth was surgically removed a second time three years ago next month (via translab approach).  So far my MRIs have been stable since then.

Yes, there is scar tissue to deal with on second surgeries and that is why the surgeon will usually use a different approach to avoid as much of it as possible.  This is one time where the skill and experience of the neurosurgeon is vitally important so choose your surgeon wisely.

Dr. Schwartz completely removed the regrowth without damaging my facial nerve (a top concern of mine).  I am now completely deaf in that ear, but the Oticon Medical Ponto Pro abutment was implanted at the same time as the second surgery and it is a tremendous help in hearing sounds from my deaf side.  So glad I decided to do that!

PM me if you'd like to talk.

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

Sheryl

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Re: Regrowth of tumor removed 12 years ago
« Reply #2 on: May 01, 2014, 08:06:29 pm »
Hi Scott - Sorry after 12 years that you have to face this again.  My husband has another type of brain tumor called a meningioma.  He has had two craniotomies and two separate sessions with radiation - once with Cyberknife at the Beth Israel in Boston and the last one was IMRT  (30 sessions) at Cape Cod Hospital, which ironically was recommended by the Boston docs (Dana Farber) so that we could stay closer to home.  We have been chasing this tumor and subsequent regrowths since October of 2003 when he was 60 years old.  He tolerated both types of radiation quite well - some fatigue and some loss of hair in the area which has not really returned to baseline.  I, too, have a brain tumor (we like to do things together after almost 48 years).  Mine is more like an AN, being on the brain stem and affecting cranial nerves 8 & 9.  I have been able to W&W since November of 2001 with only 5 mm of growth in that time and no discernible symptoms.

Good luck - keep us posted,
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

leapyrtwins

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Re: Regrowth of tumor removed 12 years ago
« Reply #3 on: May 02, 2014, 09:24:55 am »
Scott -

sorry to hear about the regrowth; especially after 12 years.

Radiation is a great option, but from what I've read on the Forum, a second surgery isn't out of the question.  Things have changed a lot in the past 12 years when it comes to ANs.

I'd consult with several doctors and see what all your options are before making your decision.

Good luck and prayers,

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

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