Questions about possible treatments

[annamaria]

Hi,

I am new to this Forum.  I was diagnozed with a posterior fossa meningioma (approx 3 cm) also with IAC involvement (approx 0.8 cm). This is 2 months back.  I have another MRI scheduled in 1 mo.  I've seen a couple of specialists (John Hopinks) and I have a paper eval of my situation from the doctors at UPMC); I'll be seeing folks at UVA in mid August. [btw, I also have insurance limitations with some establishments.]

I've started the process of determining what approaches to follow: Gamma or retrosig surgery.  I would like to get input from anyone that has had either of these in terms of outcomes, post-procedure issues, and longer term status. Is Gamma viable? Is surgery better?

Any input is appreciated. 

Annamaria

[tenai98]

Hi Annamaria  and welcome to the forum
Treatment is always a personal choice....there is a wide range of outcomes from all of the treatments available...no two are alike...I had translab a little over a yr ago...I researched and reseached til I found peace with having surgery...My first choice was radiation but I decided against it and opt for translab....It is a soul searching time...Read research and ask the forumites and doctors tons of questions til you can make ur decision on your choice of treatment.
JO

[leapyrtwins]

Hi, Annamaria.

I had the choice of radiation (Gamma knife) or surgery and I chose surgery (retrosigmoid) but want to stress that this was MY choice.  Your choice should be based on what you feel is best for you - after consulting with an experienced, qualified doctor (or doctors).

You should contact the ANA for their informational brochures.  They are very helpful and will answer a lot of your questions.

My AN was 1.5 cm at the time of diagnosis and almost 3 cms at the time of my surgery approximately 6 weeks later.  My surgery was 7 1/2 hours and my only permanent "side-effect" is SSD (single-sided deafness).  I opted for a BAHA (bone anchored hearing aid) 9 months after my tumor was removed and I've been extremely happy with it.

Jan

[annamaria]

I appreciate the quick input -- Are there folks who used Gamma and have an input and/or opinions? AnnaMaria

[mk]

3 cms is at the limit for GK. your doctors should be able to advise you if it is possible, depending on the location, surrounding structures etc. Meningiomas may be at different locations that ANs - make sure to get the advise of a radiation oncologist in addition to the neurosurgeon.
I had GK two years ago for a 3 cm AN, and as of now haven't experienced any adverse problems, although of course the verdict is still out on whether it has worked. Vivian (Vivian B.) had GK for a (most likely) meningioma very recently.

Marianna

[Jim Scott]

Hi, and welcome, Annamaria ~

I underwent debulking surgery for a large (4.5 cm) AN in June, 2006 using the retrosigmoid approach.  The 9-hour surgery went very smoothly and I suffered no complications.  The surgery was followed up, as a plan, with FSR, not GammaKnife so I cannot credibly answer your specific query regarding the GammaKnife experience, except to echo Jan ('leapyrtwins') that every AN patient is unique and what is best for one is not necessarily best for another.  I must add that one patient's good or not-so-good experience, be it with surgery or radiation, does not guarantee another AN patient having the identical procedure will experience an identical outcome.  Choosing a doctor is crucial in obtaining a satisfactory outcome because not every neurosurgeon or radiation oncologist is experienced in dealing with acoustic neuromas, which are relatively rare.  Both surgery and radiation carry inherent risks but that cannot be avoided but a good doctor will point out the risks and explain how he'll try to avoid them during your procedure, which is what my neurosurgeon did in my case.  I'm now 4 years past my surgery and subsequent radiation treatment (which I underwent 90 days after my surgery) and I'm doing fine.  I have a few tiny deficits but nothing noticeable or that has any real impact on my lifestyle. 

I trust that you'll find an answer to your question and be able to choose a treatment for your AN that will be successful for you.  We're here to help in what ever way we can as well as to support you as you travel on this AN journey that no one really wants to take. 

Jim

[yardtick]

Hey AnnaMaria,

That is actually my legal name, but I go by Anne Marie and at times Maria, long story!  Very nice to meet you, but I wish the circumstances were different.  Lots of wonderful people on this forum with a wealth of information.  Know that what ever treatment option you decide, we are behind you 100%.

Anne Marie

[annamaria]

I do appreciate all of your comments.  I do know that it is my decision at this time, but it is very difficult to be able to make sure that I am making the right choice.  I will be doing another MRI at the end of the month to see the if there is any additional growth.  I will also be going to see other specialist in UVA for the GK and go to John Hopkins for the second time to see the surgeon again and ask additional questions.

Any additional input from anyone on GK or surgery is appreciated. Any input on UVA Gamma? Or is it better to do it at UPMC (if that is the way I go)?

AnnaMaria

[Tod]

AnnaMaria,

Just in case you decide retro-sigmoid, or if you want yet another set of opinions, you might wish to consult at MCV in Richmond with Drs. Broaddus and Coelho. I can't say enough good things about them.

-Tod

[6pick]

I'm with you, AnnaMaria, because I, too, am trying to come to a decision. My research has brought me to either translab or CyberKnife.  My "Alien" (from the movie of the same name  ) was diagnosed late May of this year. It is approximately 1.7 X 2.5 cm at the CPA with tail extending into the left auditory canal.

According to Dr. Nikolas Blevins at Stanford, if I do the surgery, I'm looking at an all-day event with 24 to 48 hours in ICU followed by 3 - 5 days inpatient and a few months of recovery. In fact, it would be a good piece of information from Forumites to learn about recovery time. Anyone care to share? When I left Dr. Blevin's office, he handed me what appeared to be a chapter from a medical book written by Drs. Robert Jackler and Marcus Pfister. It was a bit of a tome, but I feel I got the good, the bad, and the ugly.

I've also spoken with Dr. Iris Gibbs, also of Stanford re: the CyberKnife. Unfortunately, I wasn't able to get the depth of information from her that Dr. Blevins gave me. Perhaps I can fill in the blanks on this forum. I believe she told me that I'd have three, 30-90 minute sessions of radiation treatment. When I asked her about "collateral damage" she seemed to say that there was virtually none; that the risk was about 2% with either option (CyberKnife or surgery). It all sounded really good for radio until, when I asked her for data to take home to read, she handed me her department's P.R. CD and brochure. Not very informative in my opinion, so I'm just as confused as ever.

I'll be copying this post to the Radiation/Radiology topic to see what experiences were had on that board.

Thank you for your input and replies,

Mark

[turbomom]

Just had retrosigmoid on July 7th in at Duke-Raleigh hospital in Raleigh, NC. Surgery done by Dr. Takanori Fukushima. I'll be glad to answer any questions you might have.
Lisa

[6pick]

Thanks, Lisa. For starters, how long did it take before you could communicate effectively - like on the telephone?

[annamaria]

Folks,

if you go to http://www.ncbi.nlm.nih.gov/sites/entrez and type in either "meningioma radiotherapy" or "radiosurgery acoustic neuroma" you will get prime-source medical stats on these ...

AnnaMaria

[turbomom]

No problems on the phone. Talked the day after surgery to my Mom on phone using my good ear. The AN ear is usable but I tend to use my right(non-an ear) side on the phone anyway. Does your job require you to use the phone?

[6pick]

AnnaMaria: Thanks, I'll check it out.

Lisa: yes. The diagnosis came just after throwing into a startup business that is communication intensive. My health is the absolute 1st priority, of course, but the financial obligations of the startup adds stress to the mix. I have a tentative surgery date of August 16 this year, and my question was about how long I'd be out of the line-up if I had the work done then. I think I can postpone the surgery until January, and if I can, my situation will be a lot smoother. I have an appointment with the neurosurgeon late this month, so I'll be checking it out with him.

Mark