Post GK

[ppearl214]

HI John,

I don't think it's going to to a bad facility or bad machine... please remember that "individual results may vary" since each person's AN is unique onto themselves. I have to also say that in all of my extensive research when I was researching radiosurgery, other than hearing a few things here and there about FSR/Novalis and an occasional GK issue (which still remains a very important viable option in the treatment of AN's), I have yet to hear a "bad" thing about radiosurgery.

Having had CK 6 weeks ago (wow, time went by fast), I have absolutely NO bad words about the treatment choice I made or when I went. Now, Beth Israel only had their CK for 9 months and had only done a few AN's at the time of my treatment, but I had/have faith in the facility and the extensive work/training they did (trust me, I asked every question under the sun during my "pre-planning meeting" the wk before treatment).  It's all in recommendations, knowing the facility well and ask questions until you are blue in the face.  Regardless of what kind of radiosurgery, ask anything and everything, as well as going on recommendations of those that have been to the facility (get references either from the facility directly or through many of us here on the site.)

Hope that helps.
Phyllis

Who did your GK? I don't want to go to any facility that did GK and had dizzyness result. I think it may be due to physician error or a bad machine. Please people, if you have a bad result let us know who or where it was done. Thanks.

Hi,
Just wondering if anyone out there is or has experienced what I have.
I'm almost 3 months post GK, and still have constant dizziness.
Have not been able to return to work or drive a car!!  My Dr. is just chalking it up to
I'm in the 2% that don't go well !!!
Gayle

[Gayle]

Hi fellow GK er's !!! (and AN er's!!!)
It's been about 2 months since my last post here (5 months since GK), so thought I'd update you!
Hope all is going well with everyone else out there!!
I think I'm getting a little bit better--but very slowly still !
I had my GK w/ Dr. Duma at Hoag Hospital, Newport Beach Calif.
Anyway since then (Jan31,06), I've had a lot of ups & downs (I won't bore you with the details!).  This past month I fianlly saw a Dr. here in Colo. who had some answers as to why he thinks I didn't have the typical quick recovery; & I've also started vestibular-rehab.
Still can't drive or return to work, due to dizziness/vertigo.  My AN was discovered kind of by mistake (ear pressure after airplane flight/ congestion, etc., etc.---ENT finally ordered MRI) I didn't have any of the typical hearing loss that most have, just a lot of dizziness & ear pressure.  Since my AN was small (bet. 1-1.5 cm), I opted for GK.
He thinks the swelling or enhancement from the radiation is what is causing my balance nerve to still be so affected.  By the time most people discover their AN, their balance nerve has already gone from 100% functioning to 0% functioning, without them knowing (over several years--because of the slow growth of these type tumors) Again, most people go in because of hearing loss problems (& the balance/dizziness issues have already taken care of themselves----other side of brain has compensated!).  He thinks my balance nerve is somewhere in between 0 & 100 % functionality, which is why I'm  still experiencing my symptoms!  When the tumor finally starts shrinking away,
the symptoms should subside!!  That's one of the advantages(I guess!) of the open craniotomy--they cut that balance nerve(making it go from 100-0% functionality), and right away (within days), the other side of your brain takes over &  compensates, thus no dizziness or balance problems after a few days!!  He was positive w/ rehab & time (2months - to 2 yrs!!!), I would be "fine".
Whatever "fine" is!!!!
Anyone else out there having similar symptoms/ answers/insight??
Like everyone says---do your homework, ask lots of questions, etc, etc.  I don't blame the Dr. or facility neccessarily, I've seen lots of Dr's since then & shown them all my treatment plans etc.---everyone has been pretty much in agreement as to - they would have done the same thing.  Besides my rehab, I'm doing a VNG test next week---hear they are not pleasant---any words of wisdom there???
Sorry to ramble so much, here!!!
Phyl, are you still doing well ??

[ppearl214]

Hey Gayle! Thrilled to see you posting and hope you are hanging in there.  OMG, we are on the same page as to what is going on!  I've asked the CK gang on the CK support board the same thing and was seen at Beth Israel yesterday for it.  Here's the update link:

http://www.cyberknifesupport.org/forum/default.aspx?f=12&m=5344

Does this mirror your situation? Sounds a lot alike in many ways. It is not Dramamine it is Meclizine (trade name is Antivert)& is used for vertigo. Spoke to my drug pusher (pharmacist/dad), PapaPearl and he's getting updates now. As you can see in the thread, Dr. Medbery is also saying 2mg Valium helps the issue as well.

Hang in there hun. I know it's been rough for you lately, but we are sista's in radio-crime and we're going to get through this!

xo
Phyl

[targa72e]

Hi Gayle,

Who did you see here in colorado? just curious.

thanks

john

[Bob Partak]

Hi Gayle,
I agree with your doc. I'm 21 mo.'s post CK rad. and you sound like me after the treatment. I had no balance issues before Rad. but got sick as a dog 24 hr.s after my first treatment. Severe vertigo from dizzyness. I always said I just felt like I had the flu, always dizzy with vertigo if I pushed my activity. I also had the ear pressure you mention.
Now the good news. It all gets better over time. I do not notice the ear pressure unless my allergies kick in,, and I do have tinnitus.
It took me a while (14 mo.s), but my balance is much better. I walk my dogs daily and I think that helped. Also practiced one-foot-in front of the other toe -to- toe for a long time. Balance is almost not an issue anymore. Give it a few more months with practice. It'l come slowly.
I tried Meclizine, but the 2mg. of Valium worked well for me. Also, getting a lot of sleep seemed to help me a lot. I still have a problem with fatique, but that also is improving. I do agree it might take all of two years to start feeling "fine". I lost my hearing on my AN side afew months post treatment ,but I didn't have much to start with. Hang in there, it does get better. The brain takes a long time to adapt, but it does.  I even ran into a friend with single sided deafness (since childhood) and he says he has learned to locate birds and other noises. It's impossible for me, but there's hope.  Take care,  Bob
My doc is Dr.Medbery.

[Gayle]

Thanks for your reply's~~
John, my Dr. here in Colo. is Dr. Breeze (with Univ. of Colo. Hospital).
Bob, thanks for the words of encouragement----I am just not a patient person (having to learn that virtue, however!!!  I'm used to coaching & playing competitive tennis 4-5 days a week---luckily my team advanced all the way to Nationals last summer, so because of that, we had to split the team up this year---so I'm fortunate if this had to happen, it wasn't last summer!)
And if the next 6 months go as fast as these past 6 have gone -- there's hope & light at the end of the tunnel !!!
Phyl, thanks for your response & support----and yes it does seem like we're experiencing
similar symptoms!!!  I have tried the meclizine, scopolimine patches, wrist pressure bands, etc.,etc.!!  I am currently taking 5 mg of Valium 2x per day----I guess it's helping some---who knows!!!!  Good days & bad!  It's weird though, I do not get sleepy or drowsy at all from the Valium---in fact it almost seems the opposite---I've been trying to take the second one earlier---I've become  nocturnal, & stay up later than I ever did before!!  Does your Dad say that ever happens???  Upper--instead of downer??!!!!
Anyway, you hang in there too, somehow & sometime we WILL all get through this!!!

I have a new goal as of today---1 month from today there is a NBTF (National Brain Tumor Foundation) 5K walk here in Denver (July 22nd), and I AM going to be there, and walk it---even if i have to use a cane, crutches, crawl or whatever!!!  I've traded my ski pole in for my 3 iron this summer, so that might help me along too!!!
I'll keep you posted----I can walk 2-3 blocks now---1 month from now--3 miles!!!!
xoxoxoGayle

[Kilroy1976]

It is not Dramamine it is Meclizine (trade name is Antivert)& is used for vertigo. Spoke to my drug pusher (pharmacist/dad), PapaPearl and he's getting updates now. As you can see in the thread, Dr. Medbery is also saying 2mg Valium helps the issue as well.

I tried the low-dose Valium treatment as well. (Ah, Valium, is there anything it can't do? ) It seemed to help more than the meclizine did, although neither provided any substantial relief. I'm afraid that no drug is going to be a real solution in our case because of the nerve damage that creates the vertigo. I hope I'm wrong, but it seems to me that since the problem is a broken nerve, no drug can be effective unless it can fix the nerve or re-wire the brain to compensate. Thoughts?

[Gayle]

Yes, I think that's correct, the drugs can help, but it's my understanding that until that nerve dies off (necrosis??), and is not trying to function anymore, we will experience this vertigo/dizziness to some degree or other.  Once this happens (nerve is destroyed), the other side of our brain will take over/compensate & we will have balance again!!  Hooray!!!

[ppearl214]

the antivert/meclizine is killing my energy level. was prescribed 25mg (I know they also dispense as 12.5 mg).... another call into BI...seems I'm the new "benchmark" having been zapped and whacked the hardest out of all AN - CK patients... lucky me... I'm so speshal!

You all hang in there.. and Gayle, sending you huggles hun!!  You and I are going to get through this.. inch by inch, day by day!

xo
Phyl

[okiesandy]

RE: sinking feeling.

Two weeks before I knew I had an AN is was standing on a conrete dock in the Grand Caiman Islands waiting for the tender boat. The concrete sunk and I lost my balance and went staggering around and flapping my arms and generally looking like big bird. (I am pretty sure everyone thought I was into the rum).  No one else moved  so I assume the concrete did not move. That was my first clue that something was worng.

I had a feeling like sinking a couple of times in the car and for a brief period of hours a couple of times the feeling that I am falling backward. I happend to be in front of a big plate glass window and know it is only a feeling because I was looking at myself as I had this attack, nothing moved. So I guess when they say it is all in your head that's what they mean. I am not riding in anybody's car. I see double when they go over bumps at night. Don't when I drive.

Hang in there, it will get better.


Sandy

[Gayle]

Phyl,

Isn't nice to be soooo special, & in that 1-2 % category!!!!
You're right though---we'll get through this somehow, sometime!!
Don't you just wish you had that crystal ball though---it would be much easier
to be patient if you could see the light at the end of the tunnel!!!
Are you doing vestibular rehab yet???
I've started that (I've gone 3 times now), & she thinks there's hope, & that
she see's definite progress!   Actually I think I can see a little bit too (or I'm just getting used to it (I'm making myself get out more & walk, or rather stagger!!).
Hang in there!!!
xoxoxoxoxoGayle