Just had gamma knife surgery..post op

[JoshA7703]

Hi everyone. Just had my 5mm AN operated on with gamma knife by Dr Sheehan at Univ. Of Virginia Medical Center. Radiation lasted about 18 minutes. I have no pain at pin sites, no headaches either.
The day after treatment I had a nice breakfast and started my drive back home to Ohio. During the drive I noticed I was getting easily aggitated. Everything woukd bother me, including the radio at times. My eye started to tear up every now and then. After 5 hours of driving and needing to fuel up, I stepped out of my vehicle and became dizzy/lightheaded. It subsided to a certain degree and I continued my journey back home. When I got home, I was really wobbly!! The tinnitus in my ear was louder as well. I was also having like a "surge" of wooziness..i would feel decent and then suddenly get a surge or burst of this. I contacted Dr Sheehan's office and spoke to his nurse Karen. She told me that gamma knife would not cause swelling that quickly and swelling occurs months later.
I was able to fall asleep for just a few hours. When I awoke I still felt off and started to worry. Also noticed my left ear which has the AN on the IAC started to hurt..like a mild ear ache.can't say it has fullness but a dull ache. I called the resident neuro on call at UVA and he said tge same thing as Karen did. Clinicly, swelling doesn't occur for many many weeks. I explained to him maybe this was neck related since I do have balance related issues as well from my neck. He told me if I continue to feel bad to start taking the medrol dose pack.
Part of me questions if I made the right decision by having this procedure done. I'm reading a lot of your stories and it's like wait a second..they told me I wouldn't have any symptoms for mamy weeks and yet some are having issues days after! Dr Sheehan was happy how the tumor was located, the size and was confident I wouldn't have complications...yet here I am a day after and feel somewhat horrible. Crazy how I had 2 nurses, 2 physicians tell me swelling doesnt occur days after surgery but yet....here we are.
Questions or comments greatly appreciated. I honestly don't have much support to help me through this. My mom is ignorant when it comes to medical stuff and I'm an only child so I have no siblings to go to. I really feel like I'm on an island.

Josh

[jami]

HI Josh,

I had Cyber Knife almost 2 weeks ago (UNC Chapel Hill) and also had changes right after. The doctor who treated it said I should call in if I have major new symptoms, vs expecting it to take a few months, but CK may be different than GK in terms of outcomes.

The first week, I started having some numbness on the other side of my face, but that has gone away. I have had earaches on the non-AN side as well, which is new.
I hit a 'wall' about 7 at night, although the 2 days i have worked after (I took 2 weeks off but had to work 2 days still) the wall came about 4 pm. The 'wall' is: My AN side eyelid twitches (I can look in the mirror and see the eye lid moving), major headache and my ability to deal with complex issues evaporates. Facial numbness and taste bud issues are not new, i have had those for ever.

I think you made a good choice with GK, however. The good news is that it should stop additional growth, and all of these types of symptoms are what would come over time if it wasnt treated. Last summer, I had surgery in August, losing hearing and balance on one side. The few months beforehand were really tough working through these types of symptoms. I wish my AN had been caught earlier and I could have started with radiation instead. (the remnant left after surgery continued to grow, hence the CK).

Emotionally, the toughest part is that these issues affect us every day, and it is a lot of work to accept the new normal. It took me longer than I expected after the surgery to realize i was fighting the new way of living and always waiting for it to change, or for someone to really understand. My husband and family are super supportive, but when i share something new and different that is happening - eyelid twitching for example - the response never seems to be what i am looking for.  And I don't know what i am looking for.

Give it time. This forum is great because it helps us know we are not alone. You have MANY people here who will support you virtually!

[JoshA7703]

Hi Jami,

Thank you for telling your story. I know every patient experience is different, from hitting walls to symptoms.
I honestly have a double edge sword. One is the AN, the other is having a "dizzy neck" due to..well who knows. I have seen a NUCCA chiro who has tried to align my C1/C2, have done physical therapy, have spent $15k out of pocket on prolotherapy treatments .and yet still have neck/balance issue on top of the AN. Just met with another physical therapist who specificly deals with "dizzy necks" and is confident he can help me get better. He was amazed I had no nystagmus in his testings for inner ear issues..saying my brain has compensated for any losses. He was pro gamma knife saying that it will only help down the road.
I'm quite curious if my symptoms are from the headframe being screwed into my skull, laying on multiple surfaces with it attached and with inflamation near the suboccipital muscles.
Dr Sheehan's nurse pract. said it's possible seeing gamma knife is not known to cause swelling a day or 2 after the procedure..but of course there is no way to tell other than get a MRI.
Juat very very frustrating as you well know from your own battle.

[kestes]

Hi Josh, I also had GK with Sheehan, 6 months ago for a 14 mm.   Immediately after I had pain from pin sites but Tylenol took that completely away.  I def had an increase in tinnitus and hearing loss prob for a few days after but that completely subsided.  I had the wobbly head feeling before GK and still have it after.  I did have shooting pain here and there from the direct pin sites but that lasted no more than a week or so.  I also had a slight eye twitch but it lasted like 2 seconds and only a few times.  I did decide to take the steroid pack maybe 2 weeks after?  5 weeks after GK my husband and I hiked 25 miles in Southern Utah, part of Angels Landing and Bryce Canyon.  I have done fantastic and still am but about the 5 month mark started getting dizzy/vertigo episodes.  Mri revealed I do have some slight swelling but also showing changes in the tumor and they expect it to shrink over time.  I could take steroids again but they make me feel AWFUL   These tumors affect everyone so differently.  I chose GK because we are super active, hiking, biking, mountain hiking and wanted to continue that.  I have recently started running again, just 2 miles a day and it is a little difficult because of the dizziness.  I do hope things get better for you and this tumor requires patience and time for the body to heal.  If you continue to have problems just call them.  One thing I appreciate about Sheehan is he always responds. 

[rjv2]

Hi Josh,

I was diagnosed with right side AN in Feb 2012, when it was about .7cm x .4cm.  Symptoms were hearing loss, unsteadiness, tinnitus.  During watch-wait, I suddenly lost all hearing in that ear in April 2012, although the tumor hadn't changed much in size. I continued in watch-wait, but in Nov 2012 the tumor about doubled to 1.6cm x 1.0cm. They told me I had to choose a treatment. I chose radiosurgery, which was done in January 2013 at Geisinger in Danville, PA with Varian Trilogy.  I was back at work the next day, and did a major project presentation at a client's offices two days after treatment.   

About 3 or 4 months after treatment, my balance issues worsened somewhat, and that lasted for a couple of months before returning to "normal" for me.  My right-side deafness is permanent, and 6 years post-treatment my balance issues are still bothersome but manageable, and my tinnitus has gotten worse.  Like most AN patients, I have some fatigue issues and most days I take a short nap (usually 20 min or so) in the late afternoon, and then I'm fine for the rest of the evening.  At my 18 month MRI post-treatment, my tumor had shrunk by about 50% (it was about .9cm X .5cm at my last MRI in Sept 2017).

At a recent annual check-up with my PCP, I mentioned my ongoing AN symptoms.  I haven't seen an ear-nose-throat (ENT) specialist in several years, so my PCP referred me to one. My appointment is on Monday.  I haven't seen this ENT before, so I'll be interested in what he has to say and how much experience he has with AN patients.  I suspect that some of my current balance issues may be due to Benign paroxysmal positional vertigo (BPPV), which is a very common cause of balance issues and dizziness.  I was diagnosed with BPPV during my initial evaluation for AN.  The balance symptoms from BPPV and AN are very similar, but BPPV and AN are completely different conditions.  Treatment of BPPV is simple and can be done by a PCP, ENT, or Physical Therapist.  You can also learn how to self-treat for BPPV.  So if you haven't been evaluated for BPPV, I suggest that you see an ENT or Physical Therapist.  If you have it, as I did, it's easy to remedy.

Everyone's AN journey is different, but it seems that most of us learn to cope with our "new normal."  It's interesting that a couple of other respondents to this thread mentioned hiking at Bryce Canyon Utah.  I was there in 2016, and enjoyed hiking a few of the easy to moderately difficult trails.  I used a walking stick, which gave me confidence.  I had been to Bryce 25 years ago and hiked some of the difficult trails.  I wouldn't attempt those today due to my balance issues -- there are limits you have to adjust and adapt to.  But life goes on and it seems that most of us manage to keep doing the things we love in spite of our AN challenges. Best of luck on your journey.