Gamma Kife results???????????

[Richey]

Hello from a very yellow world of pollen in the South

I had gamma knife for a small an just a little over two years ago. So far I have seen no affect to the tumor. It has not grown any however since the first six months mri. I was wondering if anyone has seen results show up past this two year period.

Now I have a doctor telling me that I should have it removed translab and that would help my balance. My balance is not real bad but does become worse with fatigue and in the dark. I lost the hearing after gamma knife so there is no help for that and I have a bi-cross hearing aid which has helped. by far my worse side effect is the tinnitus in my deaf ear. I have tinnitus in my good ear as well but it does not bother me much as the sound kinda buffers it.

Thanks, Rich

[ppearl214]

Hello to Pollen Land  *achoo!*

Richey, sorry to hear you are running into this... I assume you had your GK in Atlanta or Birmingham?  If you are in the Atlanta area, have you consulted with the team at Emory University Hospital? I know Brucifer (and others here) know the team well and may be able to help guide you on this.

I'm sorry you are here... yet, then again, I'm not We're here to help.

Phyl

[macintosh]

Rich--

I would suggest that you need to get another opinion. There are multiple studies out there that address situations like yours, and the ones I have seen all suggest no further treatment unless the AN continues to grow. In some cases, ANs can take several years to show any signs of necrosis.

On the pubmed.gov site, some of the studies that address this question (under the seach string <acoustic neuroma radiosurgery effects>) have as principal authors Pollock, Huber, Hasegawa,and Nakamura. I'm sure there are other studies that also address this question.

Mac

[Richey]

I had my gamma knife at the Medical College of Georgia and the team that I used there are not the doctor that wants me to do translab . The doctor that did the gamma knife wants me to wait for another year and see how it looks and that's probably what I will do.

[GM]

Rich,

The normal monitoring time for post radiation (GK) is 2 years.  But...shrinkage is not necessarily the only measurement of success in GK tumor control.  If the tumor has stopped growing and doesn’t cause any further complications…this too is success.  Also, you can have the tumor irradiated again…as another option, since you had GK.

I can relate to you as I too am a GK patient and my tumor swelled slightly over the 2 year period (2003 – 2005) after treatment.  It went from 1.8cm – 2.1cm and is currently holding there.  For me surgery is the last option, the “Alamoâ€? if you will, of the tumor battle.  My viewpoint is to monitor “itâ€? to see what’s happening.  I’m currently on an annual MRI…with the next one due this June.  I’ll need to see more than 1-2mm of growth and I’ll need to have new symptoms to convince me that I need to do something else other than the current monitoring of the tumor.   I’ll be honest, I hate these things (MRI’s), I feel like I live my life in yearly increments (waiting for the next MRI result).  Can anyone else relate?   

Also…is your doctor reading the MRI or is a trained radiologist reading the MRI…there is a BIG difference here.  I’ve read some amazing stories on THIS web site of where patients…(yes patients…like us!)...pointed out errors to their docs who were reading the MRI incorrectly.

Go with your gut, don’t rush into anything unless YOU feel you need to or if you are suffering new symptoms that you just can’t deal with.  Good luck and I’ll keep you and everyone else in my prayers.

Gary

[Derek]

Hi there Gary...

Yes...I can also relate to the annual MRI scan scenario having been diagnosed over 5 years ago and having since been subject to the 'wait and watch' procedure.

If and when I have to opt for treatment it will be GK here in the UK and I have accepted that I will be having annual MRI scans for the rest of my life. But then that is not really a problem and I consider myself to be extremely fortunate that I presently have the GK option available as I just do not want to unnecessarily subject myself to invasive surgery at 63 years of age.

I also consider myself 'lucky' that I have a benign condition that is treatable and my heart goes out to those who are not quite so fortunate.

Regards

Derek

[macintosh]

This is a quote from an abstract for an article in Neurosurgery: February 2006. The primary author is BE Pollock:

<Tumor expansion after VS radiosurgery rarely denotes a failed procedure, and the majority of patients only require further imaging. Approximately one third of tumors that enlarge will remain increased in size compared with the time of radiosurgery but will not show sequential growth. Additional tumor treatment should be reserved only for patients who demonstrate progressive tumor enlargement on serial imaging (2% in this series). >

[krbonner]

Now I have a doctor telling me that I should have it removed translab and that would help my balance. My balance is not real bad but does become worse with fatigue and in the dark.

What's the reasoning for improving your balance with a translab surgery?  With a translab approach, the acoustic and vestibular nerves are removed, so I don't see how that can improve balance.  Shouldn't your other vestibular nerve be compensating regardless of whether or not you have a dead AN in there? 

Of course, I never did a lot of research on radiosurgery so I'm completely out of my league here... 

Katie

[Richey]

Now I have a doctor telling me that I should have it removed translab and that would help my balance. My balance is not real bad but does become worse with fatigue and in the dark.

What's the reasoning for improving your balance with a translab surgery?  With a translab approach, the acoustic and vestibular nerves are removed, so I don't see how that can improve balance.  Shouldn't your other vestibular nerve be compensating regardless of whether or not you have a dead AN in there? 

Of course, I never did a lot of research on radiosurgery so I'm completely out of my league here... 

Katie

Now I have a doctor telling me that I should have it removed translab and that would help my balance. My balance is not real bad but does become worse with fatigue and in the dark.

What's the reasoning for improving your balance with a translab surgery?  With a translab approach, the acoustic and vestibular nerves are removed, so I don't see how that can improve balance.  Shouldn't your other vestibular nerve be compensating regardless of whether or not you have a dead AN in there? 

Of course, I never did a lot of research on radiosurgery so I'm completely out of my league here... 

Katie

[Richey]

Hey folks, I'm not sure I understand the paths around this talk, so I am replying to myself as I could not figure out how to reply to those of you kind enough to reply to me.

Anyway, the doctor I talked to about translab is very well know from L A. I'm not sure if we are suppose to mention names on here or not. The impression I got from him is that the opposite side of your brain compensates better with no vestibular function on the other side than with a nerve that is being pushed on or crowed out by the tumor. He was not pushy but he did not agree with two other doctors that I have talked to about the degree of difficulty of surgery after radiation.

I am very thankful that I still function pretty much on a normal basis and my employer has been good to me on my work restrictions. By far my worst complaint is tinnitus which I had all along, I guess from too many years of exposer to noise in the work place. I'm a big advocate of hearing protection to my coworkers now. The tinnitus got so much worse after my hearing went away.

I failed to mention before that The Medical College of Georgia is in Augusta. We have a little golf thing going on down here this week. I hope we get a little rain to wash down some of the pollen.


Thanks to all who have posted,

Rich (could not use Rich as it was already taken so I use my Mothers old name for me Richey, which I never cared for much, it's actually Richard)

[ppearl214]

Hi Rich,

I'm hoping Brucifer logs on to see this as his team is at Emory, where they are doing radio-surgery as well as AN micro-surgery.  I know he knows names there and Augusta is a bit of a drive but may be worth it......Emory is a leader in AN treatments in Atlanta (as well as Kennestone Hospital in Marietta, I think, for Cyberknife Radiosurgery). 

I need to get back to Atlanta to visit my family and follow up on this info so I'm better informed but Brucifer can help re: Atlanta.

Phyl

[ppearl214]

Rich, here is a terrific link for the Atlanta AN treating phyciains... not sure if you saw this yet.

Phyl

http://anausa.org/forum/index.php?topic=2104.0

[pearchica]

Hey Richard, Rich (Richey): sorry to hear about your condition.  I was given a balance test by my ENT in Sacramento- it was way more uncomfortable than the MRI's or the CT Scan. However it proved that my right vestibular nerve was compensating for the left one (where my AN is). KBonner is right, translab removes the acoustical and vestibular- my ENT in Sac was going to debulk my tumor via translab, then treat the remaining amount with Gamma Knife. That's why the balance test was ordered. And it was a doozy- hot water, tepid water and cold water all squirted into both ears (one at time) and I had to keep my eyes open while the machine scanned me. Also had very uncomfortable mask on. Also had to follow red dots and keep my eyes open for 2-3 minutes at a time.  (I don't know the name of the test off hand- let me know if you need it and I can look it up). The good news was that after three separate surgical opinions, I finally got to a surgeon that was both radio and traditional, so I opted for CK treatment based on his assertion that as I had no balance issues, he would zapp the sucker. However he was pretty clear with me that had I had balance issues, he would want me to do traditional surgery. BUT having said all that, I would get a whole lot more opinions and as far as I remember- you should be able to get this thing zapped again.  Take care, and yeah, I heard about the pollen that all you folks are suffering from in the South- it made news here in Sacramento.. Annie

[Richey]

Thanks for the info Annie,

I don't think I could have taken that test and passed 10 years ago. I remember once when I was in the Air Force and guy flushed Wax from my ear and he used cold water(He did not know what he was doing) and it made me so dizzy I couldn't stand up. Some other guy told him he was wrong that you should always use warm water when doing that.

anyway, I've about decided to just wait this think out a little longer and see how the next MRI looks.
I'm still doing most anything that I did before except get on ladders at work. I have learned to take changes of direction more carefully and I can walk pretty straight most of the time unless it's real dark or course. The dark experience happened to me recently at a Sunday School class cookout at a guys house that lives out there with the cows and horses and no street lights. It was a strange feeling walking back to my car on unfamiliar ground. Once I got to the car and sat down I was fine and had no trouble driving but I going to get me a key chain light. I have been dealing with this for over two years but that was the most strange feeling yet.

Rich