Author Topic: Did You Have Radiation or Surgery The Second Time Around And Why You Chose It?  (Read 8041 times)

Kathleen_Mc

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folks: I apparently didn't have any symptoms of my regrowth. For about the first two years after I was told it was there I felt absolutely no different than I had before I knew it was there. I think the increased headaches I felt in the next three years was likely related to the stress of knowing it was there. Since my second surgery I am not much worse for wear, I get some ear pain with the killer headaches but they are no more worse or frequent than after the first surgery, I am however going through a period of great frustration and also not coping as well right now (with the headaches and vertigo that is). This too shall pass I'm sure.
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)

justafactoflife

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When I had the surgery on the 1st tumor, it was very small and my doctor told me I had a 20% chance he could save my hearing.  When I awoke he told me I was in his 20% category because I could still hear.  I was just lucky I guess in that aspect, but looking back, it makes me wonder if he left a piece of the tumor in order to save my hearing.  Especially, after he told me he got it all.  As for my balance nerve, I'm not sure if it was left intact or not.  I did have about 8 to 10 weeks of unsteadiness but it did improve over the next 2-3 years until I began noting I would somehow lose track of where I thought I was on the road and where I actually was while driving my car.  I too have a pressure build up feeling inside the ear and headaches. 

Beyond that, I also experienced a high blood pressure rise and a high white blood cell count.  My nose began bleeding almost daily and several times throughout the day.  My doctor first thought I had some sort of an infection which would cause the spike in my white blood cell count.  I was fine.  So, he sent me to an ENT to discover the bleeding nose problem.  The ENT sent me in for the MRI and they found the tumor after 5 months of Physycial therapy on my complaints about my neck, shoulder, and hand issues and explaining to them that I had headaches, dizziness, ear pressure and etc.  My doctor told me that a tumor can cause your blood pressure to rise and in some circumstances cause your white blood cell count to be high, and it i did in my case.  So you see, ...some symptoms were the same as before and some were not.
AN 1st time, July 2003
7mm x 4mm x 5mm
Subocital/Retrosigmode microsurgery
St Anthony's Hospital, St Louis MO
Dr Faisel Albanna, MD Neurosurgeon

2nd regrowth 1cm x 5mm x 4mm, Oct 2006
3 FSR using Cyberknife
St Anthony's Hos. Oklahoma City
Dr Clinton Medbery, III MD Radiologist

3rd 1.8cm x 12mm

FlyersFan68

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Here is a link I found explaining different options and statistics regarding radiation in various types of patients. In the end, this is basically just one doctor's view but does also mention in the conclusion section that the author uses FSR in the management of planned residual or recurrent acoustic neuroma. I still feel this may be the way to go for me if I was to experience another. I think you're in god hands with the mentioned chosen team. Maybe this can help clarify some possible outcome expectations and even help as to what questions to ask your team. Please be sure to get advice on "waiting and watching". We are all here no matter what you choose.
 
http://www.emedicine.com/ent/topic668.htm

Captain Deb

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Re: Did You Have Radiation or Surgery The Second Time Around And Why You Chose I
« Reply #18 on: September 22, 2006, 06:43:09 pm »
I see my neurologist Monday and am having him schedule my MRI. If I have a regrowth, I'm definitely having CK--no doubt about it. Apparantly the first one was a fast grower as my symptoms and hearing loss came on suddenly. I didn't want to go on watch and wait and have another MRI in 6 months. I just wanted the dang thing gone before it ate up my facial nerve.
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

MLB57

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Hello Justa and everyone!! I had a 1 cm rt AN totally removed Jan 2001, UMassMed Ctr, Worcester, MA and this year's MRI showed re-growth. I can emphatically say (in my case) that I will not have microsurgery again, because it didn't stop it before. (I do not regret having the surgery as odds were 95% it wouldn't come back and I just wanted it out of there and at that time would not even consider radaition.)  I have re-read all my old ANA newsletters on surgery vs radiaton and spent hrs on the web researching and even some neurosurgeons (who do surgery) recommend radiation for a small AN. And the jury is still out regarding the tumor/scar tissue being more difficult to remove if radiation fails and micorsurgery is necessary.

Have you considered GK? I have a Consult w/Dr Gerog Noren in RI Sept 28. He heads NE Gamma Knife Ctr--Gamma has a longer track record than Cyberknife--my new neurosurgeon prefers Cyberknife because of the "frameless technology" and his colleague who is head of Rad iation Oncology at my hsoptial prefers Gamma due to its track record. They both agree the the expereience of the team is the most important factor.  I read recently the House Ear Clinic in CA recently opened a Gamma Knife Ctr and they are stauch micro-surgery advocates. Of course I know it is a business decision as patients are more and more opting for radiation over surgery, and in my opinion it speaks volumes that they chose GK over CK.

Of course you need to make the decision that feels right for you, but I am thankful that microsurgery isn't my only option!! I had the retrosigmoid sub-occipital approach and is fortunate not to have headaches as I read they can happen due to that surgical approach. My surgeon said he packed my head and pasted the bone flap back and found that to be successful inprevneting headaches.

I just had a thought--if you do have repeat microsurgery, would you have the same surgical approach? I would guess so but wonder...

In any event I think the indecision is probably the worst part for you right now--when you finally decide and are at peace with your decision you will feel confident to go ahead with it... 

Best wishes and let us all know what you do!!! Regards, Mary from MA  >:( :-\ :o ::)

LancasterLass@aol.com
1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!