Author Topic: Surgery vs Radiation  (Read 2938 times)

Polina

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Surgery vs Radiation
« on: December 08, 2014, 09:25:37 am »
Hi guys,

 Resently I was diagnosed with  AN  16mm x 7mm x 7mm in my right ear.  I already have the following  symptoms :
 bad dizziness, annoying tinnitus, some hearing loss, wonky head, little eye lid twitching.  Can anyone tell me - will all these symptoms will be getting better or worst after radiation? after surgery?
I live in Baltimore/DC area. Already had appointment in John Hopkins. They advised retrosig surgery.

   I would greatly appreciate all your answers.

Thanks,
Polina

CHD63

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Re: Surgery vs Radiation
« Reply #1 on: December 08, 2014, 10:57:52 am »
Polina .....

I tried to reply to your last PM and it bounced back, saying your Inbox was full.  If it is cleared out now, let me know.  Thanks.

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

Echo

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Re: Surgery vs Radiation
« Reply #2 on: December 09, 2014, 07:49:11 pm »
Hi Polina,

I also tried responding to the email you sent me and your inbox is full.  I'll try again tomorrow to resend my response.

Meanwhile in regards to your question on this post - it's difficult to tell you what the outcome will be with symptoms post surgery or radiation.  Some people have great success and overcome many of their symptoms while others are not so lucky and have ongoing issues or new symptoms develop.  We all react differently to surgery or radiation and our recovery times vary as well. Some bounce back quickly and for others it can take weeks to months.

I can tell you that the more experienced your Dr., the better your chances for a positive outcome.

For me personally, post Gamma Knife, the headaches I used to get up the back of my head while lying down, I no longer get. The numbness on the tip of my tongue and at the side of my mouth went away about 3 months post treatment and has not returned.  Balance issues are greatly improved.  Hearing is maintaining the pre treatment level and my tinnitus has not changed - it is still manageable.  Wonky head days are becoming fewer and for me they are definitely connected to changes in barometric pressure.  Dry eye issues developed about 4 months post treatment and continue.  Ocular motor issues developed at about 6 months and are now substantially improved.   Energy levels also improving, exhaustion not quite as overwhelming.

At 15 months post GK, I am substantially better than I was this time last year.  I am not out of the woods yet, but I am happy with my treatment choice and my personal outcome to date.

Cathie.

Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

Mimispree

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Re: Surgery vs Radiation
« Reply #3 on: December 10, 2014, 07:08:29 pm »
Before my Tranlab surgery, I did the research and you should too.  I wanted the less invasive Gamma Knife surgery, but my doctor told me I wasn't a candidate.   

Learn about all of the surgeries for the tumors.  The Translab surgery I had is similar to the RetoSig.  Although I think the Translab has a much smaller incision site, and is the newest approach.

So read up on your options, prioritize them and then find the best surgeons who specialize in the type of surgery you want.  I had to travel six hours away, but I'm so glad I went to the University of Utah Medical Center.

What I regret is that I failed to get a second and third opinion, and I didn't ask more questions about what to expect in recovery.  I just assumed I would get through the surgery and hospital stay, and I would recovery much sooner than the six to eight weeks the doctors mentioned because I have always healed well and bounced-back quickly. 

I had GREAT surgeons, but for my own peace of mind post-surgery, I wish I had read this site and exhausted even more research beforehand.  If your tumor is small, minimally invasive surgery may be a good thing, OR the Watch & Wait approach may be a good idea.  Exhaust your research and read the posts on this page because you'll learn more here than from your medical team.

Make sure you're in good hands.
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.