My personal gamma knife experience 1-24-13

[robinb]

Hi Liz-

I have not seen anything on AN's with a cyst, so cant comment. I see you started another thread, so maybe you will get responses.

The good thing is that you can wait; that gives you time to do more research. I am not sure about experience of docs at UW, but encourage you to send your MRI to Dr. Chang at Stanford, and the docs at UPMC and NYU I mentioned. They will review it at no cost to you. This is important as it seems you have only consulted w/surgeons; they do surgery, so in my experience, that's what they will advocate for.

When I was doing my research, I spoke w/someone on the WTT list who highly recommended docs at Swedish, which may be close to you. I posted info below, but I did not check them out.

Here's contact info for Swedish if you want to check them out as well.  They offer both Gamma and CyberKnife.
 
Swedish NeuroScience Specialists
James Tower
550 17th Ave. Suite 500
Seattle, WA 98122
Tel: 206-320-2800
Fax: 206-320-2827
www.swedish.org
 
You may also want to Google Sandra Vermeulen, Swedish.  She is the one who did my treatment.  A truly amazing woman.

Good luck and feel free to PM me anytime.

[Bonnie B.]

I agree with Robin, making the decision is the hardest part.   I had GK twelve months ago,  It took going to several doctors and learning everything I could so that I could make an informed decision.

I did not have any problems with the whole Gamma Knife Surgery.   I will be going Tuesday to have my one year post GK MRI.  I know that the tumor must have swelled due to the radiation as I am having left sided facial weakness and tinnitus which I didn't have before GK.    It is no big deal however.   To this day, I have not regretted my decision to have GK vs surgery.

Good luck and keep us posted.

[robinb]

Good luck Bonnie w/your MRI tomorrow. Did you have one at 6 mos?

[Elizabeth Cuttler]

I think that it's a blessing to have a support group online.
It has helped me a lot just knowing that there are people who have the same condition and they are doing great.
I can't read all the posts, but belonging to these groups has been a learning experience.
Thanks to all for being here for the ones who need your opinion, or just a cyber hug.

Elizabeth

Dear Robin,

If it were not for all of you here, I most assuredly would have gone mad ( in 2012), all of you have given me the opportunity through expressing myself to realize that while I was lucky (my parents picked the hospital and the Doctor), I am no hero.

 I am just a man who unfortunately was born with a congenital condition (which was discovered in 1970) through treatment as time went on predisposed me much later in life to an AN (or so Dr. Sisti says).

Being able to blog about it and help others has been therapeutic for me as well and makes me feel as though I'm doing something useful. Thank you for providing your insight through your experiences as well.

Mike

[Bonnie B.]

Thanks Robin.  I did have an MRI at 6 months post GK that showed some swelling.  However, at that time I had no symptoms.  I did have the one year post GK yesterday and am awaiting the results.
I will keep you posted.  I hope all is well with you

[robinb]

Well today marks the two month anniversary since my GK.

I still have tinnitus, a slight annoyance at times. Hearing on the AN side might classify as serviceable but its of no real use to me. I just started another dose of prednisone to see if will help improve the hearing as it did before. On day 3, but its not doing anything of note.

All in all, I have no issues to deal with. My life is back to the way it was; I work out 4-5 times per week and travel at least twice a month by air for work.

My thanks to all that helped me navigate the treatment options and my continued support is there for anyone who has questions.

Life is good!

[dtorres135]

Bonnie:

Did you develop facial weakness a year after GK? 

[robinb]

Hi all-

Got pretty freaked out yesterday as I had a very brief episode of facial twinging/spasms. It felt like all the muscles on my AN side were contracting and distorting my face and I couldn't control it. I was actually trying to pull the corner of my mouth back to where it felt like it should be. By the time I got to a mirror everything was back to normal. After looking at posts, seems like this is not abnormal.

In the last week, I have also had increased dizziness; mostly when I am stressed or increased heart rate when working out.

From what I can read here, nothing abnormal right? Will probably call Dr. Lunsford tomorrow anyway, but any feedback appreciated.

[robinb]

Had it happen again this morning while brushing teeth; this time I could see it. Looks just like I described. Mouth pulling up, eye socket shrinking. Lasted 30 secs, felt a lot longer.

Called Dr. Lunsfords office; he is away. His associate prescribed Methylprednisolone. which I also took right after the GK.

After reading through other posts, I see its called hemifacial spasms. Hopefully will pass soon and not become more frequent. I have a very busy travel schedule over the next month; lots of flights and driving.

[dtorres135]

and this is 6 months after?  Keep us posted.

[robinb]

Hi dtorres-

Not sure who your question was directed to. I am 2.5 months post GK.

This morning I had a very mild and brief spasm, only one since starting on the Methylprednisolone. Again while I was brushing my teeth.

[Petrone]

Hi Robin,

Here's hoping that these are only temporary glitches along the way to a full recovery. Getting rest, a healthy diet, and your regular exercise routine can only help. Please keep us posted. 
My GK is scheduled in less than 2 weeks already on April 17.  I also travel quite a lot for work, but I was able to clear my travel schedule through most of the next few months.   
All the best,
Petrone

[robinb]

Hi Petrone-

Thanks for the words of encouragement. I scaled back my travel for 1st month after, thought that would be more than enough time. These spasms just take me by surprise, fortunately they are brief and hopefully will be gone soon.

I will think good thoughts for you on the 17th; the actual procedure is a breeze; check in after you're done.

[robinb]

Haven't had any more spasms!

I did call Dr. Lunsford last week; he called me back within two hours, so happy to see good follow up.

Anyway, he wasn't concerned and predicted would not be ongoing. We discussed the fact that I had Bells Palsy almost 20 years ago, which is the 7th cranial nerve...he wasn't making a correlation but said other nerves can be mildly irritated from the GK. He said he would not recommend any other meds. Anyway, hopefully gone for good.

Within 6 days of my 3 month anniversary post GK!!!

[Bonnie B.]

Robin,
I did get the results of my one year post GK MRI.  It showed some shrinkage in the center of the tumor but not the edges.   It is so strange because when I had my 6 mos. post GK MRI it showed swelling and I was asymptomatic at that time.  Six months later I am having left sided facial weakness, intermittent tinnitus, left eye twitching and pain in the left ear that sometimes radiates to the left lower jaw.  I don't understand why I didn't have these symptoms when the tumor was swelling at the 6 mos. point in time.   All of these symptoms I can live with.  Things could be much worse.