Vertigo and Radiation....worse after treatments???

[sloxana]

I am considering FSR at Vanderbilt for my 1.4cm AN, but I'm worried about my vertigo.  It seems to be getting worse and the last attack was while I was driving.  Talk about scarey!!  I'm worried now that I will have to give up driving but I am a mom of 3 whose kids are involved in many activiities after school and I need to be able to drive!  So here is my question....will the radiation make my vertigo worse or better?  I've read some conflicting posts about this and I'm really confused.  I don't want to have radiation if my vertigo will get worse afterwards.
Thanks so much for answering,
Susan

[Richey]

I had GK for my small AN and I would have to say that for a very brief period my off balance feeling may have been a little worse. Weather it was due to the radiation, the meds., or just stress I don't know.
Now, my balance was my first indication that something was not right with me so this was my main problem going into treatment. Since the treatment that was a little over two years ago my balance has done pretty good. I think that your brain learns to compensate through your vision. My balance does not keep me from doing pretty much what I want to. I do have to be mindful about it when doing some things and it does tend to be a little worse if I am tired or stressed.

[mema]

I think everyone is different in how any treatment effects them.  I had vertigo before radiation.  It didn't change.  It hasn't gotten worse just stayed the same  way it was before  my treatment.  When I last talked to my neuro-onycologist he made it seem like some people never loose their vertigo.                                                                                                       

                                                        mema                                                                                     

[Betsy]

Hi Susan,

Like Richey, the only symptom I was aware of pre-diagnosis was vertigo.  Since April, my vertigo seems to be changing into a kind of unsteadiness, as if my brain is literally moving in my head.  In a way it's better than the vertigo, which literally had me on the floor, but the unsteadiness (for want of a better term) affects my life more because the episodes last longer and when they're happening I can't drive or do anything that involves moving my head.  The theory behind the change is that the nerves on the good side are beginning compensate for the one that has the AN sitting on it.  Nobody knows for sure, but that's what I'm choosing to believe!

I'll be having radiation treatment soon, using the Trilogy system.  The docs have all warned me not to expect an overnight improvement, but the consensus is that in time, my balance problems will most likely subside.  However, there is also a chance the radiation could cause the temporary swelling that Bruce mentioned.

It's absolutely terrifying to have vertigo while on the road.  It happened to me a couple times.  Doubly stressful for you since you're driving your kids.  It's probably a good idea to line up some back-up transportation just in case.  Are your kids old enough to understand what's happening?

The bottom line is, everyone is different and our treatment results are going to be different.  The best we can do is to learn as much as possible about our options and make sure we're comfortable with our decisions.  It looks like you're already on the right track!

Betsy

[ppearl214]

Hi Susan,

I have to agree with mema... "individual results may vary".... I have had vertigo (slightly) initially post-CK but... I have another ailment (Chiari 1 Malformation) that can also throw things off, so for me, it's tough to say which brings it on.  My neuro-oncologist gave me vestibular exercises to do at home to help counter-act it (without the use of meds).  Maybe some research into some of these exercises would be of help.... just a thought.

Hang in there... and hoping your better days out-number your "not-so-good" days.

Be well,
Phyl

[gordy]

i had gamma treastment about 3 weeks ago. had some vertigo in the past. wasnt sure what it was at the time. was just unsteady and in a panic mode while driving. 3 weeks out of my gamma treatment i rode my motorcycle this wek. my car had issues and didnt even think about the vertigo. everything was fine. i do notice while riding i cant wonder out at different things. havent noticed any issues since treatment but walking through the house in the dark. good luck to you.

[Craig]

Susan,

I also had my treatments done at Vanderbilt with the Trilogy system. I found my AN because of Vertigo. I went to see Dr. Richard Prass at St. Thomas and he did not think that the vertigo had anything to do with my AN. He prescribed me Triamterene and the symptoms went away the next day. Triamterene is a diuretic so it decreases the fluids in the body. I do get off balance when I move suddenly which I do attribute that to the AN.

Craig

[linnilue]

Susan,

I also had my treatments done at Vanderbilt with the Trilogy system. I found my AN because of Vertigo. I went to see Dr. Richard Prass at St. Thomas and he did not think that the vertigo had anything to do with my AN. He prescribed me Triamterene and the symptoms went away the next day. Triamterene is a diuretic so it decreases the fluids in the body. I do get off balance when I move suddenly which I do attribute that to the AN.

Craig

  Dear Craig,  I find the response from Dr. Prass quite curious and I would like to know his reasoning in prescribing a diuretic for vertigo.  Vertigo is a cardinal sign of AN's pre and post radio or micro surgery.  Since AN,s sit on the eighth cranial nerve it makes sense that if you have an AN, that vertigo would definitely be an issue in most cases.   Do you have cardiac issues that would necessitate the need for diuresis?  I know that many of the neuro-otologists prescribe one of two benzodiazepenes because they work directly and quite quickly on the limbic system thereby stabilizing vestibular imabalance and vertigo.  So for my own research I am trying to figure out why your vertigo has nothing to do with your AN.  I would love to know why your AN is different than others in that it is not responsible for your vertigo.     

[susier]

I too, was told that my dizziness and vertigo was pobably not from my AN as it is so small.  This didn't make any sense to me and just made me wonder if there was yet something else wrong besides my AN.  I'm glad to know that vertigo is indeed a symptom of AN's.

[ppearl214]

Hey Craig... good to see you and glad to hear you are doing so well! You know I've been following your Trilogy process as it's helping me learn more about it

I'm also surprised the doc told you that he felt the vertigo was not AN related....... We know that vertigo is a common denominator with many AN patients and am curious if the doc elaborated as to why he felt your's in particular was not related to the AN.... did he give any more detail to his explanation or did he just say "Yes, you have an AN but the vertigo is unrelated".  Just curious, nothing more..... we know each AN is different in each person, so I'm just curious why he felt your's was not AN related.

Continued wellness to you!
Phyl

[Betsy]

Good morning everyone,

I have also been told that my vertigo wasn't caused by my AN.  Now that I've learned more about it, I agree that my initial vertigo was most likely MAV (migraine related vertigo).  I've had migraines all my life, sometimes with auras and without pain, which is a very strange experience indeed.  Here's a link that goes into more detail about migraine related vertigo:  http://www.tchain.com/otoneurology/disorders/central/migraine/mav.html

Either way, the vertigo was what got me to the ER and ultimately to a diagnosis while my AN is still fairly small, and I am grateful for that.  The unsteadiness and balance problems...that I'm blaming on the AN.  Whether the AN triggered episodes of migraine related vertigo, or if the vertigo led to AN symptoms...I may never know and I think I'm okay with that.

Also, very early on I had a tentative diagnosis of vestibular neuronitis, which is swellilng of the vestibular nerve. It's caused by a viral infection and can cause vertigo.  The MRI with contrast ruled that out, but I think it's something ENTs look for because it's easily treated with antibiotics and steroids.

As far as science has come, there's still a LOT yet to be discovered about ANs.

Betsy

[Craig]

Dr. Prass told me that veritgo is a symptom of AN's but he told me that they are usually not the only symptom. The reason that I went to see my regular practice doctor was because of veritgo. They found the AN but Dr. Prass felt it was unrelated and thought it was just fluid in my ears. He prescribed me the diurectic and no more dizziness. I still have the random balance issues when I turn to quickly but that is manageable.

I am feeling fine now. I got up this morning and ran a bit before work.

Cheers,

Craig

[ppearl214]

Hi Betsy and Craig,

thank you for sharing that with us... sometimes I tend to forget (dang AN) that there are definately other issues that can bring it on.  For me, I get so focused on AN and related issues that I may forget that other issues can also trigger it... my bad.   

thanks again,
Phyl

[Sefra22]

I never experienced vertigo until about 5-6 months after treatment. (Uh...now). I have had 3 episodes, fortunatley they don't last long, but the first one sure was scary. I was told that this is normal due to temporary swelling.  Like Betsy, I also have had a feeling of unsteadiness. I don't have any balance issues, but once in a while I have trouble making left turns.
Lisa