Changes since Gamma Knife Radiation

[kbwright]

Has anyone noticed any significant changes since undergoing gamma knife radiation? My symptoms of dizzy spells and the ringing in my ear seems to flucuate daily. Recently I had 4 days in a row that the dizzy spells were very mild. Then the following 2 days they were worse. I keep trying to figure out if these changes are because of anything I am doing or not doing... very confused. I have noticed that if I am even a little congested that the symptoms are worse. I have started working with a vestibular therapist/physical therapist. I am having alot of visual problems... if I read for too long, or work on the computer for long periods of time, or read looking downward, these situations bring on episodes of vertigo.

I am 3 months out of gamma knife treatment and my neurosurgeon still expresses that the worse is yet to come at the 6 month point. It was explained to me that it is most common at 6 months  for the tumor to swell and begin dying off. Has anyone been through the 6 month point and experienced worse symptoms?

I appreciate sharing any info that is helpful,
KB

[tclark]

I unfortunately cannot help you with my experience just yet, I am only 2 weeks out of my gamma knife procedure (I am actually having more difficulty with the emergency appendectomy I had to have done the week after the gamma knife procedure, totally unrelated I am sure).  I didn't have dizzy spells or balance problems ( I didn't prior to the procedure, I just had some hearing disturbances), although I think I am noticing a little bit of visual problems. I normally wear reading glasses minimally, but I am finding I am relying on them more over the past week.  I would be very interested in continuing to hear how you are doing.  I will share any new experiences I am having as the weeks progress to months for me.  Good luck.  You are actually approaching 6 months now right?  Do you have a 6 month MRI scheduled?

[SammyLee]

Hello. I had my Gamma Knife on January 28 2005.I have my followup appt on July 28th. I am nervous and just plain scared.
I have heard that the tumor(I named it.. Egbert and Guiness) will swell. That is the biggest fear I have.
The Gamma itself was scarey. They put the headgear on and had to unscrew and rescrew it in.
I was sick for 3 days after and slept on the bathroom floor the first two days of the three.
As for the changes since that day. My ear always feels like there is pressure pushing against it or there is water in it.
My headaches are sometimes bad and I am exhausted.  I called my Doctor's office in Lexington and they said it was normal.

Keep us updated.

[Mark]

For those considering radiosurgery to treat their AN, this reinforces why it is important to look for the more advanced machines such as Cyberknife and even Novalis. The GK is old technology and due to it's requirement of a head frame is generally not conducive to doing FSR. It is no longer the "gold standard" in accuracy ( Cyberknife is more accurate based on recently published studies) which has been it's claim to fame for a number of years.. If you select radiosurgery as a treatment for your AN over surgery, then that is half the decision. The next part is to select the machine and approach ( one shot or FSR) that a  physician is using. Do not assume that all machines are equal. Just because the doctor you first saw operates out of a hospital that uses a GK, don't assume that is the best way to be treated. It is really no different for a surgery patient deciding between House in LA or another highly experienced surgeon and someone who has only operated on a few AN's.

[kbwright]

To address the last entry...
I did research cyberknife and gamma knife before making my decision. The gamma knife facility here in Denver has done thousands of treatments on AN's over the past 15+ years. I am confidant that I made the right decision.

I seem to be doing better each week, though it is a slow recovery. I has a 3 month MRI that showed some swelling which has caused more hearing loss. My balance has improved through the help of a physical therapist who specializes in vestibular therapy. I just have to take things alot slower than I used to.

Hope you are all doing well. Thanks for the response.
KB

[kat]

 

Hi I am new to this site . I had Gk in Sheffield UK over 7 months ago . My An was 2.2cm and apart from tinnitus and
reduced hearing in my left ear I had no other symptoms . After months of research and wasted appointments only
offering surgery  I finally managed to persuade my GP to get an appointment to see if my tumour would be suitable
for GK .  I finally had my GK in April 05 and tolerated the whole procedure very well .The fitting of the headframe was the
only uncomfortable bit and I had a feeling like Jet lag for a few days after  but all in all it sure beats 9 hours of brainsurgery
and 3 months recovery and possible permanent after effects .

I have carried on with my life as usual right up till  4 weeks ago I started to have severe discomfort in my neck which gradually mutated into sharp  shooting pains in my head and ear on the side of the AN . I phoned the specialists who
performed the GK and had some very conflicting information . One doctor said that it was most likely the tumour
reacting to the GK and thought that I should just take anti inflammatory paikillers for the problem . This did not
help so I called again and the next specialist said that I should not be experiencing any pain at all as a result of the GK .
I finally manage d to get an appointment in 2 weeks time but in the meanwhile I really would like to hear if anyone else
out there has had similar symptoms after GK and what medication was prescribed fro the pain  which is intermittent and has not so far responded to any of the usual headache pills . At the moment I have been pain free for 4 days and feeling fine
but I fear that it might be just a temporary break and that there might be more to follow . I have not had any of the usual
symptoms of poor balance or any facial weakness or tingling .

I would like to hear from anyone post Gk who has had similar symptoms and what if any medication was prescribed and more importantly if it worked . I have looked on British sites for answers but since this is such a rare condition I find the US
sites better because of course there is a  much larger population and more cases of AN . 

Best regards Kat
 

[Goh]

Hi everyone,
                I had my gamma knife treatment in June 2004.  My AN was 2cm by 1.8cm on the left ear.  The most difficult part of the experience was the fixing of the headframe.  After treatment I suffered from headache as well as severe vommitting and like Sammy Lee, I spent the first few days after treatment in the toilet (about 4 to 5 days).   Less than 2 weeks after treatment I was as good as new and was fortunate not to experience any serious complications - hearing loss was same as pre treatment, no balancing problem nor any headache.

                 I had my first MRI scan after treatment in June 2005 and fortunately there was no further growth of the AN.  My next MRI scan is in June 2006.  My condition is currently being monitored by a neurologist, a radiologist and an ENT specialist.

                 So far so good and I am not on any medication.  Recently I had also considered hearing aid for my AN ear but after some tests I was told that conventional hearing aids will not be suitable.  I guess my only option is the BAHA.  I have not make up my mind yet and is still functioning on one reasonably good hearing ear.   

                 I wish all of you the very best and hope your respective conditions would improve.  Thank goodness for this site - which had provided me with crucial information before I opted for Gamma Knife treatment.

                 Keep in touch and god bless!


Chuan from Singapore

[hernieb1]

Hi KB:

I had Gamma Knife 3 months ago: I had dizzy spelss before the procedure, but they have now increased a bit and it is ratyher unconfortable.
I was told by my neurosurgeon that this, as well as tinnitus, is normal after Gamma.
I have been feeling dizzy, lightheaded, a bit spacey.
It should get better...
Good luck!!

Hernieb.