Just had gamma knife surgery last Tuesday

[darrylx]

I'm having a huge problem with my balance and double vision and my doc gave me some meds to combat the vertigo.  I also can only feel/taste with half of my tongue.  This started hitting me hard on Friday.  He told me that it was kind of unusual to have these symptoms so quickly.  Today, I've started to have numbness on the side of my face that had the surgery.  Has anybody else had these symptoms so quickly and if so, for how long?

[nanramone]

hi darrylx -

Yes, I had acute symptoms which began the night following GK, and was also told this was unusual. I lost all hearing in AN ear, and balance was so bad I literally fell over (onto a bed, luckily). I also had the worse headache of my life time, and was extremely disoriented. I was put on steroids immediately - was too unstable to walk alone the next day. But symptoms were under control within a week. I had residual imbalance issues and went to vestibular therapy for several months - the exercises seemed to be helpful.

I am only infrequently dizzy now - maybe 3 times daily at the max, when previously it was about 15 times. The dizziness only lasts for seconds at a time in almost all cases. Also, I was napping up to 3 times daily, and this is no longer the case - I rarely nap now.

GK was 4 months ago. I feel stable, but have begun to experience headaches and some very minor facial spasms and stinging pain. I am assuming these things are transient and unless it becomes worse or chronic, I'm not going to get upset about it. It most ways, my life is returning to normal. I have been working out and even running on a treadmill, and will hit the street soon!

Hang in there - I think it's normal to experience a variety of uncomfortable symptoms post radiation. And regardless of what I was told in advance of radiation by the experts, fatigue and imbalance ARE common after radiation, or so many of us would not have this experience!!! We aren't inventing these symptoms!!!

Please continue to report - it's helpful to others.

I hope you feel better soon~

Nancy

[nanramone]

oh - I forgot to add that I also have that burnt tongue effect on the tip of my tongue - annoying!

[darrylx]

Nancy,

My doc started me on meds to combat the vertigo but it's not working.  I can barely walk, have got double vision and can't even begin to drive.  I'm going to see him today to try to get the steroid treatment.  Do you still take the steroids?

This morning I've found I've got a weakness on the right side of my mouth (the GK side) it kind of feels like I got a shot of novocaine.  It just gets better and better.

It is especially frustrating because I am currently stationed overseas and they flew me stateside for the procedure.  I'm in a holding pattern here until they can get the majority of my problems resolved. 

Thanks for your input.  It has been invaluable.

[nanramone]

darrylx - The steroids were a "dose-pack"... this is a course of treatment with prednisone that is a high dose at the start, which diminishes over 6 days. I haven't taken steroids since then.

I agree you should call the doctor for advice.

Take care~

Nancy

[ppearl214]

darrylx - The steroids were a "dose-pack"... this is a course of treatment with prednisone that is a high dose at the start, which diminishes over 6 days. I haven't taken steroids since then.

I agree you should call the doctor for advice.

Take care~

Nancy

Medrol Dosepak is the 5-day heavy-duty course of treatment noted. Sorry.. had to... daughter of a pharmacist here....Phyl

[ppearl214]

darryl,

I'm sorry to hear you are having these issues, so soon post-GK.  Many post-radio patients do (and some don't) run into issues, some soon, some later.  I will share what I can (I'm 4-1/2 yrs post CK).

There are many steroids possible... I noted in the post above in reference to what Nan noted (Medrol Dosepak).  There are also others, such as Decadron, which is also commonly used post radiation.  If there is any edema going on, which is enhancing vertigo, etc, the steroids can help to calm these issues down.

You are noting you are "stationed" overseas but here stateside for treatment (btw, I work for the AF), so I'm not sure if you are on base being treated at a VA Hosp or where you are located. Can you please advise where your GK was done and who is doing the follow up so we can better assist?  I understand what can and what cannot be disclosed so only what you can share.

We're here to help. Hang in there.
Phyl

[darrylx]

Phyl,

Thanks for the info.  I'm currently stationed in Okinawa, Japan and I had the GK done at the Gamma Knife Center of the Pacific in Honolulu, HI.  I don't plan on leaving here until all issues are resolved.  I can't work!

[ppearl214]

Arigato Darryl!

Heck, I wouldn't want to leave Honolulu, given the chance! Been there, loved it!

Understood about not being able to work and staying put until doc gets you resolved. You noted that you were to see the doc yesterday. What did they say?

Mahalo!
Phyl

[darrylx]

Phyl,

Just got back from the doc and he has prescribed me with Dexamethasone and I'll take that for a week.  He says it should help with the vertigo and facial weakness. 

[ppearl214]

Phyl,

Just got back from the doc and he has prescribed me with Dexamethasone and I'll take that for a week.  He says it should help with the vertigo and facial weakness. 

Hi Darryl

Dexameth.... generic version of med called "Decadron"... what I lovingly refer to as "Deca-crap." Works great... side affects can stink (many here, myself included, have had the side affects ie: insomnia, eating binges, etc) but not all endure the side affects. If you clean your room REALLY good at 3am while eating a full bag of Halloween candy already on sale at the local convenient store (preferably an ABC Store on each corner!), that is when you know you are experiencing them!

The Dexameth should do the trick. It helps to keep the edema in check, should help calm down the symptoms you are having.  Usually its a short course prescribed and please note (if the doc didn't tell you already) that you must "wean" off the med and not stop abruptly (unless you are at 2mg). Not sure what mg the doc prescribed (ie: 2mg 4x/day or 2mg 3x day, etc) but please remember to "wean" off. Very important!

Hang in there... plu-eeeze keep us updated. Your GK/radio AN journey is helping others here who may be researching treatment options by sharing your experiences along the way. Thanks for letting us know!

Phyl

[sunfish]

First couple weeks after Cyberknife were very rough for me also.  These nasty, acute symptoms will probably fade quickly over the next couple weeks.  I had my treatments March 16-18, but couldn't really work full time until March 29. I didn't have any steroids post-treatment.

Keep us posted!

[darrylx]

I've been taking 4 mg of dexamethasone four times a day along with 20 mg of omeprazole one time a day to control the additional stomach acid from the steroids.  My vertigo has decreased dramatically.  I still can't risk driving and still need a little help walking around but I can tell things are getting better.  I am up all night though.

Still taking vicodin a couple of times a day for the pain.  My facial weakness has improved a little bit so hopefully another couple of days of treatment with the steroids will improve that.  I still have no hearing in the GK ear.  That might be gone.  We'll see.

[Jim Scott]

Darryl ~

Thanks for the update.  I've been following this thread and I'm pleased to learn that things are improving for you.

Jim

[nanramone]

Darryl - I'm glad the medication is working for you. Thanks for reporting - this will help someone else someday.

Nancy