ANA Discussion Forum
Archive => Archives => Topic started by: Gayle on April 14, 2006, 07:30:01 pm
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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
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Hi Gayle and welcome.... I did a little digging here in the forums and found this link that maybe will help with some answers you seek.
http://anausa.org/forum/index.php?topic=341.0
Some other GK posters here on the site note their Post GK symptoms and maybe a good reference point to start. Hope it helps.
Phyllis
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Phyllis,
Thanks for you're info--it was very helpful, and it's always a little reassuring
to know that you are not the only one out there experiencing these things!!
Gayle
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The first symptom of my AN was dizziness. It got worse almost immediately after radiation, but subsided within a few weeks. Recently it has flared up into full-blown vertigo. Off and on, all day long, it's like having the bed spins without the pleasure of getting rip-roaring drunk first (or being in bed :P). I'm usually ok driving, even if it gets a bit scary when the vertigo hits while I'm on the road, but don't get me anywhere near a passenger seat. More than a mile or two of riding and there's a real danger that I'll toss my cookies.
I have some hope that it'll go away soon though. Since radiosurgery, I've had one symptom after another, but aside from the tinnitus they never seem to last more than a few weeks. Hopefully yours will get better as well; three months post-procedure isn't that long.
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Thanks for the input!
I know dizziness can be a part of recovery.
And I know 3 months (even though it seems more like 3 years!), isn't that long,
does anyone have suggestions as to whether I should try to push myself a lot more, or lay low and give my brain more time to adjust?? I have been wearing that patch behind the ear, and have been taking some valium too. Have tried lots of things, none of which works!!!
Gayle
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Kilroy1976
that's exactly how I've been describing my dizziness---like having the spins without having a single drink!!!
What were some of your other symptoms you've had, that you mentioned one thing afer another since radiation???
I have a 1.5 cm AN on right side, and did GK on Jan 31/06, and also seem to have one thing after another!
Gayle
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It would probably be best to do as much as you can without hurting yourself. I think any activity that requires balance and coordination, even something as simple as walking, will help your brain figure out which way is up. Of course, you'd be taking the advice of someone that hasn't gotten their own vertigo under control, so...
I've just had the usual problems... Headache, fatigue, dizziness, ear ache, facial pain... It seems that I've forgotten most of it already. They come and go very quickly sometimes, and I haven't been taking notes.
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running into the same as you (Gayle and Kilroy) almost 2 weeks post CK treatment. I'm finding the dizziness is worse at night... do you all find that any of the symptoms (dizziness, balance, tinnitus) are most prevelent during one part of the day vs. another? I've read some here about the tinnitus being worse at night but the other symptoms, just curious. To try to walk the dog before bedtime is really quite challenging for me now.
Phyl
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Phyl,
I'm trying to keep a journal to see if there are any patterns or consistencies, but so far haven't found any----some days I'm better in the morning & some in the afternoon or evening! Probably part of why it's worse in the evening, is you're worn out from the day! And I'm sure you have the same as I -- good days & not so good days!! I have 3 Dr. apts this week, so will keep you posted if I get any "new revelations"!! Did you have any dizziness before procedure?? What meds are you on???
Gayle
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HI Gayle and thanks! Please let me know what the drs say this week. I'd be curious.
No dizziness pre-treatment and has been rearing its ugly face this past week. Balance was issue pre-treatment (in line also with my Chiari 1 Malformation, so I can't tell which condition was throwing it off) but it has worsened since treatment. I just tell everyone my cane is a fashion statement! :)
Meds on now are Decadron but in taper mode now for another week, then done. I've had severe reactions to meds the past couple of weeks but the docs and such knew of my sensitivities (not allergies, per se, but sensitivities). But, hanging tough with it.
If you get any new "revelations", oh, please... do share... I'm taking notes as well.
Hang in there!
Phyl
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Look up the brain port at Florida Institute for human and machine cognition, which is supposed to be a new treatment for vertigo.
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I had CK starting Jan 5, 2006. I am nearly 4 months post radiation. One thing I was shown by an accident victum is to quit looking down when you walk. This lady is the wife of a co-worker who sustained very severe head injuries a few years back. She went to several theraphy clinics and could only get so far in her recovery. She taught me to wear a foam neck brace when driving so that my eyes could track better and when my head was turning it is level. The biggest thing is when walking to look at the horizon and not at your feet or down. I practice this all of the time and my balance and tilting feeling is much better.
This lady learned this from a ballet instructor of all things. I always had the feeling of the beginnings of motion sickness. Our bodies are adjusting to something moving around on our balance nerve. Our eyes take over a lot of our balance function. Looking down because our balance is bad could be some of the dizzy feeling. This is not a cure, it just helps me with the crazy feeling. I went to the ear doctor Monday and he noticed a big change in my rotational balance. I have been doing this every day for three weeks. I also notice when I wear my glasses and not my contacts my balance and dizzy feeling are worse.
Sandy
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Ok, I have something semi-useful for a change. One cheap and easy thing to try is Dramamine or meclizine (Antivert). It hardly makes a dent in my vertigo, but I can tell that it helps ever so slightly. And if it doesn't work for you, you're only out a few dollars. ;)
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Full blown vertigo was one of my first symptoms as well. After a week and a half and lots of meds (steroids, antibiotics, etc), it tapered off dramatically. After about a month, I started driving again (I practiced short drives near my house early in the morning). This happened last May (wow, almost a year now) and I had my GK last August. By then, I just felt the usual balance issues and that has not changed. In fact I would say I'm sort of at a platue (?). Anyway, I have just learned to walk with my head straight forward, be careful moving from shade to sun, don't walk on the moving sidewalks (nausea!) etc.
However, I had a really weird experience last Sat. I was driving and stopped in the left turn lane (my an is left side) waiting for my turn arrow. I turned my head to the right and was watching a vehicle pulling a trailer with a Seado on it slowly. Suddenly, I felt like the left side of my car was sinking! I immediately thought "2 flat tires"! and then realized it wasn't the car, it was me sinking!! Needless to say I freaked out. But the sensation lasted only a few seconds, but it was so dramatic, it really frightened me. So anyway, the other night I'm driving home from work, and I'm stopped in the left turn lane waiting for my arrow (oh oh where is this story going?) and foolishly, I'm watching the traffic go by in the right lanes, when I suddenly feel kinda dizzy. Well short story long, I've learned another lesson. :)
Anyway, I feel for you Gayle and I hope the dizziness gets better soon.
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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
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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
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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 ??
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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
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Hi Gayle,
Who did you see here in colorado? just curious.
thanks
john
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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.
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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
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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? :P) 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?
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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!!!
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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
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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
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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