reaccurance

[cheeka]

hello everyone,
I had a 13mm on my right side removed via retrosigmoid on Jan 4, 2006 NYC
My docs told me that tumor was removed 100%
I was just wondering if anyone had a reaccurance or had a new one develop on the other side
They said that i can go on with my life and probably never have to worry about a tumor again
my 6 month post op MRI had nor signs of the tumor
I am due for my first annual MRI in June of 2007
or
has anyone had weird things happen post op
any weird happenings or noises in their head
thanks
kym

[Boppie]

KYM,  We can only hope that tumors are 100% removed.  But in light of the size for yours and the approach chosen, I would guess your tumor was optimally visible to the surgeon and he believes yours is 100% removed.  Since you had surgery Jan. 06 if that was correct, you might still be sensing some weird ear nerve sounds.  Nerve endings in the scalp are healing, and your face might be feeling weird at times.

Congratulations!  You are one year post op!   

[Jim Scott]

Kym:

I too had my AN removed via the retrosigmoid approach, but in my case, the neurosurgeon opted to 'de-bulk' the tumor (it was large) and purposely left about a third of it in place in order to avoid cutting/disturbing the cranial/facial nerves and the problems that can cause.  I came through the surgery with no real complications; no CSF leaks, facial paralysis, serious eye or swallowing difficulties, headaches, etc.  Three months following the surgery I underwent 5 weeks of FSR treatments to kill the remaining tumor cells.  No problems there, either.  This fairly recent, two-tiered approach to AN removal has been successfully performed on many AN patients in New England with excellent success - defined as no tumor re-growth, ever.  With small AN tumors, physicians utilizing microsurgery are often able to completely remove the tumor, as I trust happened with you.  I'm scheduled for an updated MRI in April, which will tell me whether there has been any change in the remaining tumor.  Your upcoming MRI will also tell you if your doctor's optimisim is well-founded.  I sincerely hope that it is.     

Jim

[badkins]

I had my AN removed translab removed 1-10-06. They left a portion on my facial nerve and I was aware. My tumor did grow rapidly and I underwent gamma knife at UVA 9-29-06. Now we wait to see if this has worked to stop the growth. Best of luck to you.
Beth

[ppearl214]

Hi Jim, if my short term memory serves me right, I believe jcinma (Jane) did the same, debulk and radio-surgery. I know she peeks here from time to time, so hoping she can also chime in (yeah, Jane, I owe you a Grey Goose!  )

Phyl

Kym:

I too had my AN removed via the retrosigmoid approach, but in my case, the neurosurgeon opted to 'de-bulk' the tumor (it was large) and purposely left about a third of it in place in order to avoid cutting/disturbing the cranial/facial nerves and the problems that can cause.  I came through the surgery with no real complications; no CSF leaks, facial paralysis, serious eye or swallowing difficulties, headaches, etc.  Three months following the surgery I underwent 5 weeks of FSR treatments to kill the remaining tumor cells.  No problems there, either.  This fairly recent, two-tiered approach to AN removal has been successfully performed on many AN patients in New England with excellent success - defined as no tumor re-growth, ever.  With small AN tumors, physicians utilizing microsurgery are often able to completely remove the tumor, as I trust happened with you.  I'm scheduled for an updated MRI in April, which will tell me whether there has been any change in the remaining tumor.  Your upcoming MRI will also tell you if your doctor's optimisim is well-founded.  I sincerely hope that it is.     

Jim

[jcinma]

Phyl,
Your memory is amazing!  Yes, I had surgery to debulk as total removal was not an option without endangering the facial nerve.  I made it quite clear that preserving the facial nerve was the only goal I had. This was a reocurrrence, so I was already deaf on that side from the previous surgery.  I, like Jim followed up with FSR (30 treatments).  It has been a year and a half and 2 follow up MRIs that show absolutely no growth.  I'll take that!!!  See you at the next east coast brunch-
Jane

[ppearl214]

(Jane, I'm milking my dr's note for short term memory loss.... don't blow my cover!

[Brandi]

Hello, my name is Brandi and I was first diagnosed with an A.N. when I was 31 yrs old. I had a 4 cm tumor and went through surgery (retrosigmoid-translabryinthe approach) successfully, leaving me deaf on the right. The surgeons left about 1 cm behind, on the facial nerve, with the intention of gamma knife. Within 6 weeks time, another 4 cm tumor grew back in the same place (very deep interfering with the brain stem). I went through another surgery down to 1 cm again. I had gamma knife done a couple of months later. Since then the tumor remnant is about 7 mm in size, doing okay. During the surgeries I had a lot of CSF leakage and brain swelling and had to have a permanent shunt placed. The gamma knife took about an hour 1/2. I thought I was fine, back at work a couple months later; but started to notice serious problems with memory, concentration, aggitation, etc... I am almost 5 years post surgery and have filed for disability due to major problems with work. I wonder about my future and my abilities. I've been evaluated a couple of times due to increasing cognitive difficulties, and it appears that I sustained quite a bit of frontal lobe damage. I've only been off work for about 5 mos. and am still having great emotional difficulty with all this.

This is the first time I've ever posted. Its just nice to know there are others who can relate.

Brandi

[ppearl214]

Hi Brandi and welcome.

You have sure been through a lot and thrilled you have found us here to lean on.... we're real good for that

It's really weird but many of us have noted recently (ok, the past year) on this site and the CK Patient Support Board about cognitive issues.  The question has been posed to many dr's and no one seems to be able to give us a clear answer why many are enduring short term memory issues, writing issues, concentration issues, etc.  I wish I had the answer as the short term memory issue drives me nuts......

I have to share... the past few weeks on ABC News (national news for our int'l gang here) with reports by Bob Woodruff have focused on brain injury. He is a newscaster that was injured with severe TBI (traumatic brain injury) in a roadside bomb while reporting in Iraq last year.  The more I watch his special reports the past 2 weeks, it has had me thinking that, even though we do not have TBI, our functions have to be affected in one way or another since this does affect brain. 

Any thoughts on this? I'd love to hear others thoughts on it.......

Brandi, I'm sorry you have endured so much.  My hope is that the GK will do the trick to kill off the remainder of your AN.  Hang in there.

Phyl

[nancyann]

I'm with you guys on the short term memory issues.
I expected it immediately post op - things I routinely do everyday I've had trouble with,
especially at work.  I've noticed it does continue & I'm almost 9 months post op.
My writing is also a little sloppier- at work I copy dr's notes instead of writing like I use to...
geuss that affects my ability to concentrate too....Now that I think about it, it isn't only the
memory issues....   but,  I'M GLAD TO BE ALIVE & STILL KICKING !!!!

[matti]

Phyl - I am glad you brought up cognitive issues. I had microsurgery almost 9 years ago and immediately noticed difficulties with concentration, short term memory, hand writing, transposing words, and finishing a complete thought or sentence. At times I feel like a stroke victim. From day one, my doctors and surgeons have said it is not related to AN surgery, BUT I DIDN'T HAVE ANY OF THESE PROBLEMS BEFORE!!!! 

I have been watching the interviews with Bob Woodruff and his wife and notice many similarities between our cognitive issues.

I had my surgery at a teaching hospital and have brought this subject up many times as something that needs to be addressed and researched because there are too many of us experiencing the same issues.

Cheryl