Incidental medium AN finding 6 months ago...

[rm516]

I fell in bathroom in Mar.09, Emergency room  CT scan showed ~ 2cm AN..
MRI confirmed 2.7x2.6x2.6 cm CPA round giving mass effect.(meningioma)
Symptoms free , minimum hearing loss (high frequency only, word discrimination > 90 %)  no facial issues.
Had a repeat MRI after 6 months.. No change in dimensions (this time 2.6X2.7X2.6  cm).. Shows no IAU involvement
Consulted with Dr Golfinos, Dr Sisti & Dr Sen in NYC. First two doctors want RS surgery soon where as as Dr Sen wants to watch-wait for a repeat MRI year(as I am symptoms free except for occasional tinnitus). Dr Sisti gives best chances with expected surgery lasting < 4 hours .
Any one with similar experience and similar size AN.
Is worth waiting for a year for repeat MRI because I don't know, if growth stopped many years ago ? I am 53 yrs Male.
I can live with minor annoyance than permanent deficits (may or may not happen) 
any suggestion appreciated.
 ???First post on  MB 

[sgerrard]

Your AN/menigioma is squarely in the medium sized category, and there are lots of those around. If the 6 month MRI showed no growth, and your hearing is good and unchanged, watch and wait makes sense to me. I think I would ask for 6 month MRIs rather than annual, just to catch it early if it does start growing, and continue to get hearing tests as well. If it stays stable for a year or two, then annual checkups would be enough.

There are cases of people watching a tumor in this size range for years. Derek's story is a good example: http://anausa.org/forum/index.php?topic=3791.0.  If it does start growing or the hearing starts to go, though, I would get on with treatment fairly soon, you don't want it to get much bigger than that.

Best wishes for a successful wait.

Steve

[Vivian B.]

Hi there,

I have the same exact type of tumour, except mine is 1.9cm. I was also diagnosed in March 09. I have an upcoming MRI next month. I was recommended to W & W and then radiosurgery. My symptoms are mild ringing, hearing loss 30% and balance nerve loss 49%. I saw a surgeon, nurosurgeon and radiologist and all recommended the same thing. Mine however has grown 8mm into the intracranial area toward the facial nerve, sometimes I feel a little numbness on the right side of my lip. I was told that these tumors are more rare than the Acoustic Neuromas, but same pathology and same treatment. There are a couple of other people on the forum with CPA meningiomas. Maybe they will reply to your post as well. Keep us posted.

Vivian

[rm516]

Steve/Vivian.
Thanks for your encouraging comments.
My initial diagnosis was in ER room for different reasons, Imagine Doctor comes in start saying "brain tumor"  AN &  MRI  etc.
 Words like meningiomas, Schwannomas etc were so mouthful and foreign. I started finding out that Nuero surgery is not like regular surgery, these are complex and longer.. Every day, I learn new medical terms. Thanks for sharing with a newbie.
BTW Derek's story is inspirational and does have lots in common. Please keep them coming as it will help me make an rational decision to Watch&wait rather than rush into something unknowingly.

regards
Raj
 

[leapyrtwins]

Raj -

I'm with Steve on this.  I'd ask for an MRI in 6 months and go from there. 

With the size of your AN, you can probably continue to watch and wait until a) it grows larger or b) your symptoms get worse - greater hearing loss, facial issues, etc.

Surgery can have negative side-effects, but each case is different.  It's not something to go into lightly, but if you eventually decide to opt for it don't stress too much.  There is life after AN surgery 

I'm not familiar with Drs. Sen and Sisti, which is not to say that they've aren't good, but I can tell you that Drs. Roland & Golfinos have an excellent reputation. 

Jan

[rm516]

Jan,
    Thanks for advising getting MRI at  6 month's interval  for my size meningioma /vestibular schwannoma.
    I met with Dr Golfinos only (not yet with Tom Ronald). Dr. Sen is chairman of nuero surgery dept. (St.Lukes Hospital), good reputation for craniotomies.
    Dr Michael Sisti from Columbia university has very impressive record (4000+ surgeries both GK & Micro , 750+ AN surgeries alone).
    He said to me that "He believes in quality of life for his patients" not just in successful operations. He made me feel very comfortable.

[sgerrard]

Hi Raj,

I got a few hits doing a search for "Dr Sisti" on the forum. The most recent was from mandy721 (Mandy), whose husband Ken had surgery with Dr. Sisti on Aug. 2.

I do think that while you watch and wait, researching and forming Plan B, in the event it does grow, is a good idea. It will make the decision easier if the time comes, and it is more likely that you will have growth than it is for smaller tumors, since obviously yours has done some growing in the past. This was a common comment made by doctors at the recent symposium.

You can research procedures and doctors at your leisure to help pass the time.

Steve

[CHD63]

Raj .....

Just wanted to add my welcome to this ANA Forum.

Steve, Vivian, and Jan have already given you very good advice.  I would agree with them that you go for six month MRIs unless you develop additional symptoms (or increasing levels of your current ones).  Then, I would not wait to have another evaluation sooner.  ANs almost always are slow growing but there are those of us who had sudden growth so be watchful on the symptoms.

Clarice

[mk]

Hello Raj,

your situation reminds me mine exactly. AN of similar size, no symptoms other than slight numbness in the face. The neurosurgeon I saw first recommended also W&W since I was symptom free - but this is something that they tend to do in Canada more.
After a bout of sudden hearing loss (which came back completely with steroids), I decided to seek treatment. Wanting to remain symptom free (among other reasons) steered me towards GK. This was a bit risky, because of the potential of swelling, but anyway, it has turned out OK for me up to now.

It is good that you have consulted with experienced doctors. One thing that you should ask about is if there is any concern with brainstem compression, 4th ventricle compression etc. At this size, and depending on the location, these are serious factors in deciding what to do.

Best regards,
Marianna

[rm516]

Clarice/Marianna and others,

Thanks for sharing your experiences and concerns. These will be helpful in future.
It is good to know "what to expect" in various scenarios but disadvantage, is that "one starts over analyzing" and pretend having symptoms even though  those are not there! So for it looks like there are no new symptoms , I would like it to remain that way.
BTW, I read somewhere that these lesions not only stop growing at one point but  may start to regress (<6%) during w&W. Is it true? Did someone observe "regression" by itself ? Please share such stories.

  Does anyone know about experimental VS medicine trial ? (Phosphoinositide-dependent protein kinase-1 (PDK1)... new drug } ...
Thanks
regards
Raj    

[leapyrtwins]

I've heard of ANs that don't continue to grow, but I've never heard of regression.

I've never heard of the experimental trial either, but then again, I'm not an AN expert.

Jan

[rm516]

Jan,
This what I found during my research, i wanted someone more knowledgeable than me ( newbee) to comment.

Mention of regression on  page 272

http://books.google.com/books?id=QatG2Rin6PsC&pg=PA272&lpg=PA272&dq=vestibular+schwanna++regress&source=bl&ots=sM2KROxBCM&sig=eDgcBDY3cM0RA_eltVG6ogS6Oec&hl=en&ei=mpiQSv_lL


Vestibular Schwannoma: Pathogenesis and Treatment DevelopmentFitz- (Hugh Symposium June 12 , 2009)
http://medical.wesrch.com/paper_details/pdftext/ME1LYY000MTXZ/vestibular_schwannoma:_pathogenesis_and_treatment_development

regards
Raj

[sgerrard]

Raj,

I'm glad to see you have worked out how to search the Internet for information. That should keep you busy for a while!

On the first point, the above mentioned Derek reported a reduction in AN size last year. See this message in particular:
 http://anausa.org/forum/index.php?topic=3791.msg60394#msg60394

It is not very common, but one thing you learn about ANs is that nothing seems to be completely off the table.

On the second, Dr. Welling was at the symposium last week, and gave a good presentation on their research on drugs affecting ANs (and other schwannomas). They are focused on those related to NF2, since NF2 patients can have multiple occurrences. There are interesting results with possible future use, although all of them are very expensive at the moment ($5,000 to $15,000 per month). I think the trials are strictly NF2 patients at this point. You could always ask, though.

Keep reading...

Steve

[leapyrtwins]

Steve -

just read the link with Derek's regression post.

I'm somewhat skeptical.  I think back to my own diagnostic MRI which showed my AN to be 1.5 cm and then to my surgery (approximately 6 weeks later) when my docs found my AN to be almost double that - which made it close to 3 cm

My theory is that Derek's MRI showed an inaccurate measurement - and I think mine did also.  I've had numerous patients tell me that their AN, once the docs opened their head, wasn't the size that their MRI originally showed.

I could be wrong; just my opinion.

Jan

[Sheryl]

Raj - It's turned into a beautiful day on Cape Cod - Hurricane Bill blew by with only some rain (which we needed) and here I sit reading your very informative links - thank you.

I am a 7-1/2 year (almost 8 year) wait and watcher for a 9th cranial nerve schwannoma.  I've graduated to MRI's every two years which will be coming up this November.  Since it was discovered at 9 mm (although one neuroradiologist thought it to be slightly larger), it has only increased by 3 mm to approximately 12 mm. 

What I found extremely interesting in the article you posted (and Derek will appreciate too) is "growth rate is usually slower in older than younger patients".  Also, "slow or absent growth over a period of 18 months to 3 years is said to make it unlikely that subsequent enlargement will be significant".  They also talk about hormone receptors and I tried to link my use of Arimidex for five years (an estrogen blocking drug because of breast cancer) to my schwannoma.  In those five years I had absolutely no change; whereas, in the first three years (2001 to 2004) before Arimidex was the time when I had the 3 mm growth.  I wrote to a few researchers and they claim there was not a link.  I was able to stop the Arimidex this past June and have noticed some increased dizziness/vertigo - nothing that I can't live with.  My two-year MRI in November wiill be interesting.

Ironically, my husband has been battling another benign brain tumor called a meningioma.  He had surgical resection in 2004, had Cyberknife with a regrowth in 2007, and just had to undergo another surgery for regrowth on July 9th.  There are three grades of meningomas and his was graded, "atypical grade 2".  Still benign but more likely to recur.  The surgeon was very aggressive and, even though doing well, my husband has been in an inpatient rehab since the surgery 6-1/2 weeks ago.

Good luck and keep us posted.
Sheryl