Dr. Jason Sheehan - University of Virginia - Gamma Knife

[mcrue]

I'm officially a "postie-toastie."

I had my Gamma Knife treatment on the morning of Thursday, March 3rd, 2016 at 9:30am.

My treatment plan lasted 52 minutes.

I was treated by Dr. Jason Sheehan at the University of Virginia in Charlottesville, Virginia. I believe they are the third largest Gamma Knife treatment center in the country.

Prior to my visit from Michigan, I was concerned I may not fit inside the MRI, CT ,and Gamma Knife machines due to my "Big & Tall" stature. I'm 6'3 tall and 375 pounds with a giant head and even bigger beer belly.

The good news is I did fit in all the machines; however, they couldn't "screw down" my face plate inside the CT scanner, so they decided to just scan me with the CT with my face plate on (but not "screwed down" and "in place" as they did in the Gamma Knife machine).

Obviously, I was really concerned this might affect the outcome and precision of my treatment.

I was able to have my head frame "screwed in" to the Gamma Knife machine.

[Glupson]

Congrats! 

First few days are diffucult to go through, some headaches can occur. But, in 4-5 days, you should feel just as before!

Keep us informed!
All best,
G.

[Janey]

Hoping for great results.    I have an MRI next Monday to see where I stand with W & W, but think
I've decided on Gamma Knife if it comes to treatment.  Keep us all informed of your progress!

[tdlight]

Congratulations Mr. Toastie!  Hoping for a completely uneventful recovery for you.

I have heard the head frame may be a little more traumatic than some of the marketing literature would have you believe.  How was it?

[rupert]

Just a walk in the park mcrue.     I know you had some concerns.  Glad you reached a treatment decision.

[mcrue]

Thank you blw, glupson, janey, tdlight, janey, and rupert.

It means a lot to me.

The head frame was the easiest part. After inserting an IV, they wheeled me to the "head frame room" where there must have been 10 people waiting for me. It felt like a pit stop at NASCAR. My head frame was affixed in less than 2 minutes.  I felt zero pain.

Apparently the IV gave me fluids and "conscious sedation", plus they apparently gave me 4 shots to the pin hole sites on my skull. I felt nothing when they put it on, and I felt nothing when they took it off. It was easier than I had anticipated. I had no headaches. I just felt very minor pressure feeling at the pin sites which is barely worth mentioning.

The anxiety the 48 hours prior to treatment was the worst part for me. Plus, when they couldn't screw my head in place for the CT scan machine I started "OCD'ing" about whether-or-not the treatment would be as effective.

[Echo]

Congratulations Mcrue!
I found it a huge relief to have the treatment behind me and to start moving forward again.
All the best.

Cathie

[mcrue]

Congratulations Mcrue!
I found it a huge relief to have the treatment behind me and to start moving forward again.
All the best.

Cathie

Thank you.

I agree; however, once you become a "postie-toastie" you can't ever become "untoasted."

I hope everything is successful in the long run.

[mcrue]

Unfortunately, less than a week after Gamma Knife, my hearing has declined significantly from almost 100 speech recognition to only 40. That' a huge decline in just 5 days post Gamma Knife.

Also, as feared, my tinnitus is "rock star" loud again, most likely due to the new hearing loss.

Headache still persist 5 days post-op,  so they prescribed a "zpak" type package of 4mg methylprednisolone steroids, which taper off each day for 6 days ( no refills).

[tdlight]

Hang in there big guy...

[Blw]

I would expect a roller coaster like ride. If you read throughout the board you'll see all types of outcomes. Just stay even keel. I hav'nt really had much going on. I had a slight dull head ache a week ago for a few days, and my hearing fluctuates, but I think that is exacerbated by allergies. I think after radiation, at three months, things can really start to flare up. It's a long process with ups and downs. You had a larger tumor, so you may some wild swings. The UVA group was pretty responsive--I spent hours asking questions and they were very patient, answered everything. If you want to know if you made the right deciion, go to You tube and watch an AN removal by surgery.

[Echo]

Hi Mcrue,

You'll be okay, don't panic!  Blw is quite right when telling you to expect a roller coaster ride.  Some of us experience a bit of a ride while others don't, it's not uncommon.  I had a very uneventful first 3 months post GK.  From the 3 month point to 18 months I had lots of different things happen. The things that happened to me came and went. Sometimes I'd have just one issue and sometimes I'd have a few at the same time:

- Through numerous hearing tests over the first 2 years, my word discrimination has gone from 40% to 20% to 40% several times.  The good thing for me is that my hearing hasn't completely gone and my Phonak BiCros has been a life saver.

- I experienced many wonky head days and balance issues. I couldn't walk a straight line for close to 20 months.

- I developed ocular motor issues. When I walked, buildings and trees moved up and down and sideways. Items on grocery shelves blurred and jumped when trying to scan and find something.  (Driving was okay as long as I didn't go on the expressway or drive at night.)

- Extreme exhaustion set in and I learned to take naps at noon and get to bed early at night. Rest and more rest was the answer, trying to fight it just didn't work.

Between 18 - 24 months things started to settle down and disappear.  My 2 year anniversary was last September and since then I've basically been back to normal.  It's actually quite boring - no more bouncing buildings or wonky head days, and no more going to bed at 8 p.m.   I was fortunate, I was able to ride through the discomfort without taking anything more than ADVIL.  What you need to know is that the roller coaster ride can happen. It's usually the AN swelling and reacting to the radiation and it can do this several times over the first 2-3 years.  Hang in, and know that you will get through this.

Cathie.

[mcrue]

Thank you very much Tdlight, BLW and Echo. I appreciate your thoughtfulness and replies.

I think my headaches and increased tinnitus were caused my a very bad cold/flu I received just 4 days out of the hospital. Who knows if I picked this cold/flu up during my short stay in the hospital ward, the hotel, or the 4 airplanes I had to take; however, finally my headache is gone since I got some low-dose Vicodin and steroid (and Allegra-D), and my congestion is tapering down. I think in 4-or-5 days I should be back to normal.

Obviously from this point out, I'm going to think every little thing is caused by the treatment.

My main concern now is the nerves immediately behind my eyes feel like they're squinting at times. Like someone is stepping on them.  It's hard to describe, but it's obviously the nerves directly behind my eye balls. I hope this is also because of my recent flu and congestion.

I received the surgical report today, and found out Dr. Sheehan administered 12 "Gray" with a maximum of 24 "gray." Does this mean I had 24 "gray" of radiation at some point? My treatment only lasted 52 minutes.

Does it usually take 4 or 5 years before everything is "done," and what's going to happen is going to happen?

How soon before I know if it was successful or failed?

I still can't believe my hearing went down from nearly 100% word recognition to only 40% word recognition in less than a week post treatment.

I wish I had some clarity on whether-or-not the fact that my head-frame was unable to be screwed down in the CT machine (immediately prior to Gamma Knife) would have any effect on the outcome?

Anyways, I'm already missing the Charlottesville, Virginia local  "40 Mile IPA" beer  from Three Notch'd Brewery. It's the best draft beer I ever had (and I normally don't drink beer - only soda pop).

Thanks again for all your support and encouragement. Whether it's microsurgery or radiosurgery, all I had to do was sit there and then recover. It was the doctors who did all the work. Either way, the process is life-changing and makes you realize what really matters in life and place things into perspective.

If you visit Charlottesville, be sure to stay away from the Hampton Inn, as the water pressure was nearly non-existent haha.

[mcrue]

I'm pretty sure the "squinting feeling" behind my eyes was caused from the Sinusitis from my cold. I'm the type of patient that needs constant reassurance when it comes to life changing events like brain surgery treatments.

As others have mentioned, I'm very fortunate to have been treated at one of the Centers of Excellence and by Dr. Sheehan at the University of Virginia. I feel it was well worth the extra money, time, and effort to make the trip to Virginia to be in some of the best and most experienced hands regarding Gamma Knife. Plus, he is well published and was highly recommended by others on this forum.

I told some of his staff I wish I could get him to be featured on the Dr. Oz show. I'm very fortunate and happy that I'm finally on "the other side" of the decision-making process after all these months.

[Blw]

I think at about 2 years they have a good idea of whether it worked or not. Part of the dying process can involve swelling of the tumor and that will push on nerves, with all sorts of symptoms. When they radiate it, they are hitting the nerves which will become irritated. I think the hearing nerve is more sensitive than the facial nerve, so your hearing can fluctuate and gradually decrease. The facial nerve should eventually get back to normal, but it innervates your whole side of your face, so you can have eye, mouth, cheek, and other areas that go crazy. From everything I've read, just think up and down. Good days and bad days, and eventually the good days will prevail. But you shouldn't be shocked by anything, even if the MRI comes back and says it got larger. That is typically swelling. The Grey units are the radiation does and it is calculated by the area of the tumor. I think they give it as a range.