Author Topic: NEW AND UNSURE WHAT TO DO?  (Read 8239 times)

proudmomof3

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NEW AND UNSURE WHAT TO DO?
« on: April 09, 2011, 12:40:18 pm »
Hello,  I was diagnosed 2 weeks ago with AN. I have had problems for years with my hearing, tinnitus, headaches and my GP would not take me seriously, so I took myself to an ENT Dr. After looking in my ear and taking a hearing test, he immediately said I have AN and sent me for an MRI. Well, he was right. The size is about 1.5cm, and it appears it is pressing in my brain, though the Dr did not say that, it is definitely touching my brain and looks as if it is actually "in" there.

I hope someone can help me because I do not know what to do. I saw the neurosurgeon Friday who has already scheduled me for the Gamma Knife surgery in 3 weeks. I went in there with absolutely no question (like a complete idiot). After coming home and researching, I have read where the Gamma Knife could possibly cause a cancerous tumor in the future. I am now really afraid. I have 3 children ages 2, 5, and 9. I stay at home with them and homeschool. I do not know whether to have "real" surgery to remove the tumor, or chance it and do the Gamma Knife and hope I do not get a cancerous tumor 10 years down the road.

Has anyone felt this dilemma, and if so, how did you decide? I do not want to go through such an invasive surgery with 3 small children, yet I know at least the tumor will be removed. I hear good things about the Gamma Knife, but is the Dr pushing that because it is the "latest and greatest" invention? We did not even discuss removal of the tumor during my visit.

Any help would greatly be appreciated. Also, I live in the Richmond, VA area and there is a Gamma Knife option right here in Richmond,

Thank you,
 Cheryl

**Thank you everyone for your responses and words of encouragement. I know this is only a decision that I can make. It is a bit overwhelming, but it is comforting to know there are others that have been through this and they are doing fine. For those of you who say that GK does not cause cancer, did you doctors tell you? I can't determine what I find on the internet is truth or myth...How do you know?  Thanks again![/color][/b]
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« Last Edit: April 10, 2011, 10:35:44 am by cpayne101 »
Right AN - 1.5cm
Diagnosed 3/2011
GK  4/2011
Last MRI 5/13 - 1.5cm
SSD Right Side, Constant Tinnitus, Vertigo, Headaches

jennifer7

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Re: NEW AND UNSURE WHAT TO DO?
« Reply #1 on: April 09, 2011, 01:42:17 pm »
Hi Cheryl

Welcome to the forum.  I'm sorry you have had to find us.

I can't help you out with gamma knife, I had mine removed surgically, but I can say three weeks is really fast.  You don't want to put off ANs forever but they are not typically something you have to rush into.  It really pays to take a little while and research doctors and methods, every doctor does their best but some doctors have better outcomes than others.  Better outcomes, meaning less side effects of treatment.  You might consider getting a second opinion or third.  Sometimes it is worth traveling farther and "big name" hospitals do not mean better outcomes. 

Hope this helps
Jennifer

retrosig 2/10/10 1.2cm
headaches, facial weakness, tinnitus
hearing preserved :)

Tod

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Re: NEW AND UNSURE WHAT TO DO?
« Reply #2 on: April 09, 2011, 01:45:32 pm »
Hi Cheryl and welcome.

First, take deep breath. The general wisdom with a tumor the size you have is that you have time to make a decision. I live in the Richmond area and will send you a private message with my phone number and email so we can talk directly if you feel it would help.

Second, as I share with you my experience, please keep in mind that it is certainly not the norm. On Dec 31, 2009 I had an MRI at St Francis (in Chesterfield) after experiencing a similar set of symptoms to yours. The following Monday, after a very long holiday weekend, I got the news from the ENT (the radiologist had already told me that I had a brain tumor and that he had contacted  the referring physician already) that I had a largish tumor pressing against my brainstem. About 4.5 centimeters give or take...a little larger than a golf ball. From what I had read over that weekend, I knew that radiation was not an option because of the size. So the answer was surgery, the question was where and who?

I was referred to docs at VCU/MCV for the following week. During that time, after reading copious pages on this site, I had found I could send a copy of my MRI to the House Ear Institute (HEI) for a free telephone consult. I did that. I also met with a neurotologist (an ENT specializing in these tumors and surgery) and the neurosurgeon he works with. They outlined their thoughts about how long the surgery would take, what approach they would use, how long I would be in the hospital, when I could return to work, and all that. In between the two appointments I also had two conversations with the docs at HEI. Given that I had a blended family situation at the time with various members with their own disabilities, I wanted to have this done close to home if at all possible. I was able to make that decision because all the docs were making the same statements: 14-18 hours of surgery, 3-5 days in ICU, a couple days in a regular room, and then home and back to work 4-8 weeks.

It didn't work quite that way. I ended up with 32 (or 36 depending on who you talk to) hours of surgery, about 39 hours of waiting room time for my family, six days of intubation, two weeks in ICU, and 10 weeks at home before returningto work. I also had some typical deficits (temporary facial paralysis, eye problems) and atypical deficits (paralyzed vocal cord, swallowing difficulties). But those last ones are very unusual and I had large tumor in a very bad place that was very difficult to get to, but the surgeons just refused to quit until they felt they could really accomplish no more. Ultimately, the feel they removed 85-90% of the tumor.

14 months later I am doing extraordinarily well. My voice is returning, my health is excellent, and most importantly, my family survived. This was harder on them than it was on me. I am doing so well, that in 10 days I will be on the Appalachian trail for 56 miles with part of my scout troop. Life is good.

Third, and perhaps most importantly to you, and keeping in mind that I am not a doctor, neither Gamma Knife, nor Cyber Knife (or for that matter, any of the radiation surgeries) are likely to cause a cancerous tumor. There are a number of people here who can speak more completely about the topic. For my part, I have my 14 month MRI on Monday and if they tell me that "Bob" has started growing again, I will not hesitate to proceed with GK, CK, or the other radiation options.

I had extraordinary care at VCU/MCV and continue to have such. There are some fabulous doctors there. There are also a lot of people here who swear by their experiences at HEI and elsewhere.

I'm glad you have found us, although I'm sorry that you had to.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

leapyrtwins

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Re: NEW AND UNSURE WHAT TO DO?
« Reply #3 on: April 09, 2011, 03:28:07 pm »
I do not know whether to have "real" surgery to remove the tumor, or chance it and do the Gamma Knife and hope I do not get a cancerous tumor 10 years down the road.

Cheryl -

this is a complete and utter myth.  Having GK for an AN will not give you a cancerous tumor. 

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

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: NEW AND UNSURE WHAT TO DO?
« Reply #4 on: April 09, 2011, 04:05:15 pm »
Hi, Cheryl ~

Welcome to the ANA discussion forums.  Although the initial diagnosis of an acoustic neuroma is always a bit of a shock, yours is relatively small and there is no need to rush into anything, be it surgery or radiation.  I'm not a doctor and won't presume to advise you on what method might be best to treat your AN but  I can tell you without equivocation that, as both Tod and Jan have emphatically stated, undergoing the Gamma Knife procedure does not generate a malignancy in the irradiated tumor.  I don't think it would be inaccurate to state that your doctor is misinformed on that issue.  However, although the AN turning cancerous is not an issue, GK does carry a few inherent risks, as does any AN treatment, certainly including surgery.  I underwent debulking surgery followed by radiation (FSR) and did not experience any negative effects but as we always state, every AN case/patient is unique and one patient's experience, be it good or not-so-good, does not guarantee that another AN patient having the same procedure(s) will have an identical outcome.  Too many variables are involved but as the ANA recommends, employing a physician that has extensive experience treating acoustic neuroma patients is a paramount factor.  I wish you a successful quest in choosing the right procedure - for you - and would urge you, again, not to allow yourself to be 'rushed' into a decision.  We're glad to do whatever we can do to help you along this journey that no one really wants to take.  Please stay connected here via these forums.  Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

sgerrard

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Re: NEW AND UNSURE WHAT TO DO?
« Reply #5 on: April 10, 2011, 02:11:27 pm »
Hi Cheryl,

In medicine, just about everything is possible at some level. The question should always be, how likely is it?

The reason for the confusion about radiation treatment of ANs (among doctors as well as patients), is that another kind of radiation, whole brain radiation, has a significant risk of causing a new tumor. About 5% of patients treated that way get a new tumor in the next 10 years. For that reason, it is used only on patients who already have a serious malignant brain tumor.

That treatment is entirely different from radiation treatment for an acoustic neuroma. Stereotactic radiation does not expose surrounding tissue to significant levels of radiation, so that the only tissue affected by it is the neuroma itself, which is of course the goal. There are numerous studies that show that with more than 25,000 patients treated with GK or CK, the rate of malignant brain tumor formation is essentially the same as with the general population. In other words, you have a small risk of getting a malignant brain tumor anyway, and GK or CK do not significantly increase that risk.

By the way, GK is not a recent development. It has been in use for treating ANs for over 20 years now, and the results are good. There are good reasons for not doing radiation treatment (longer time before you know it worked, weird idea of still having the dead tumor in there, etc.), but the risk of cancer is not one them.

You can get an oncologist's view of the matter on the Cyberknife patient forum:
http://www.cyberknife.com/forum.aspx

Just as you would speak to a surgeon about surgery, it is a good idea to speak to a radiation oncologist about radiation, so you can get the full story.

Best wishes,

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

CHD63

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Re: NEW AND UNSURE WHAT TO DO?
« Reply #6 on: April 10, 2011, 02:26:40 pm »
Hi Cheryl and welcome to this forum .....

You already have good responses, but I did want to add that if you have not already done so, send for the free informational brochures from the ANA.  They contain unbiased and good information in an easy to read format.  Check the other pages on the ANA home page for questions to ask the doctors, as well.  See http://www.anausa.org/index.php?option=com_content&view=article&id=118&Itemid=116 for questions to ask.  See http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195 for free brochures.

Do not be in a big rush to make a decision.  Yes, it is yours to make, but gather all of the facts and opinions you can before doing so.  Sometimes you need to take a break from the fact-finding if it all becomes too overwhelming.  ANs are normally very slow growing.

Best thoughts.  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

JAndrews

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Re: NEW AND UNSURE WHAT TO DO?
« Reply #7 on: April 10, 2011, 05:12:57 pm »
There is no evidence that gamma treatment will cause a cancerous tumor later in life:) I do, and please know this is just my opinion..that the doctor/doctors you have seen have made a very quick opinion in your case. Not a good thing. I would absolutely seek other opinions. I know you have small children and so do I, but its imperative that you get proper treatment. The size of your tumor sounds like you've got some time to research. I know its hard with 3 kids to take care of. Mine were 8 weeks and 2 1/2 years when I got my diagnosis, I know how scared you are.
Please seek the advice/opinions of experts in this field. The fact that surgery wasn't even mentioned is negligent on their part. Make sure you take a list of questions and write all the answers down. You will be ok:) But please......take some time to research. I went to the House Ear Institute after alot of research and alot of money spent...I am fine. Not an easy road..but ok at the end. Please feel free to email me with your number and I will call you.
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

ppearl214

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Re: NEW AND UNSURE WHAT TO DO?
« Reply #8 on: April 11, 2011, 03:59:02 am »
Hi Cheryl and welcome.  As you can see, folks are providing terrific inputs and we constantly tout around here that treatment decisions are VERY personal and you will know in your gut what direction you want to take when the time is right.... all based on your AN (ie: location of tumor, size, treatment options available to you, your health insurance, etc).

As with any treatment option with any ailment in life, risks are always noted.  Many potential risks with surgical removal of AN's.... and with radio treatment options for AN's.  Potential risks may tend to run a bit higher with surgical removal of AN's (since it is an invasive procedure) but with radio, potential risks exist as well... including potential enhanced hearing loss, potential enhanced balance issues, etc.  There are documented cases of radio-treated AN's becoming malignant but the extreme low % of that occurring vs. the number of AN's  successfully treated with radio barely ranks against the number of success cases.

It has been shared with me that the chance of my AN becoming malignant is actually lower than me potentially being struck by lightening.

Please remind yourself that "individual results may vary...."  Some surgical patients do fine, some have issues... and the same applies to radio choices as well. Some radio patients do well (I, personally, am in that %) and some have issues.

As you do your homework, your gut should begin to speak to you to help guide you to a direction of treatment that you feel will be best for you.  For the most part, gut feelings tend to be on the money.... so, by doing this homework and by listening to your gut, here's hoping it will guide you to the road of wellness.

Hang in there... and again, welcome!  As you can see, we are all here to help!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"