My personal gamma knife experience 1-24-13

[robinb]

I thought I would start a new post to document my experience in appreciation for those that had done theirs previously. All were immensely helpful in my decision making process as far as treatment and doctor selection.

So, arrived in Pittsburgh last night. Staying at Hilton Garden Inn (formerly Wyndham) within walking distance to UPMC. However, its 9 degrees, so not planning on walking anywhere! Plus hospital has valet parking.

Appointment this morning w/Dr. Lunsford and GK team; everyone we came in contact with could not have been nicer and put me more at ease. First met w/Dr. Lunsford's senior "fellow" to review history. Then Dr. Lunsford. I reiterated that I requested the GK Perfexion (they also have 4C) and they said while other machine fine for my size tumor, no problem w/my request. Reviewed procedure with me and I reminded them how nervous I am about head frame and after talking with them, I am totally at ease. Then met nursing staff to again review history and tomorrow's procedure. All I can say is I am 100% pleased w/decision to come here. Then sent two buildings over (via skybridge) for bloodwork and same experience w/lab people.

I did mention to Dr. Lunsford that both he and UPMC are no longer in list of physicians and medical centers on ANA web site (I asked why on this forum but no responses). He indicated that at this point he does not have the need to solicit endorsements.

When I first started research, Dr. Lunsford and UPMC were along w/Dr. Konziolka before he left in Sept. 2012 for NYU. However, its well known that Dr. Lunsford brought the first Gamma Knife to this country.

So done for the day. Will relax and have a nice dinner with my husband.

Will post again after procedure tomorrow.

[sarahinPA]

Hello robin!  first if all, good luck tomorrow!!  I had GK atUPMC in Jan 2009. I worked with Dr kondziolka and had a very positive experience there.  rest assured about the head frame, they will give you some medicine tomorrow that makes you very relaxed, and you won't even know they are putting the head piece on. it doesn't hurt either I left that day with some bandages on my forehead and that's all! I slept a lot the next day but other than that I felt good.  it was easy as pie and I'd go through it again if I had too.  the nurse staff at the GK department are all wonderful they make you very comfortable and are super nice!

I just know you are in great hands with your team! you will be in my thoughts and prayers tomorrow!!

[MDemisay]

Dear Robin,

You are probably in treatment this afternoon, good luck on being a postie toastie (after your treatment)! I found that UPMC was a fine facility when I interviewed with Dr. Kondzuilka and enjoyed the consideration that Dr. Konzuilka gave me. Quite frankly, I would have had it done there except for the fact that Dr. Sisti did the initial surgery on me and had I chosen Dr. Konzuilka done my GK, Sisti would not have seen me again. Good luck with Dr.Lundsford you should have an excellent outcome.

The Gamma Knife surgery in fact is not surgery at all. It is just a relatively painless one shot procedure  that takes about 40 minutes to do from start of the GK machine to the minute the machine shuts off, of course it takes about 3 hours for them to attach the heavy titanium steel head frame.
 It takes without complications about 3 weeks for the pin holes to heal.

 I want you to know that I skipped a day at work after I had the procedure done and even attended a party for a long time departing employee the day I returned to work. The very worst thing that occurred on the day of was the funny way I looked, I looked like a WWI veteran home from the war on the ride home from the hospital. As you know, I was quite prayerful and meditative as I went in in fact because I had turned my meditation CD on I went through the first 20 minutes without realizing that the machine had been turned on! It was soundless! All the while I had been thinking that it was going to be noisy!

An easy breezy experience, and an awful lot of worry out of the way. May your experience be the same! Post often and keep up the attitude! Let me be the first to welcome you to the post treatment side, welcome and Happy Trails to you.

Keep us posted!

Mike

[robinb]

Well I am officially a postie toastie now!

Back at hotel after a long morning.
checked into hospital at 5:45am, taken back for prep at 6:15. My nurse, Debbie, is wonderful. Given a "happy pill" and IV placed.
Shortly thereafter happy juice in the IV line and then Dr. Lunsford and team came in to attach head frame.
Like everyone told me, no big deal; had a moment of discomfort on one site so a little more local took care of that.

The off to MRI, half asleep so again no big deal.

Back to room to watch tv and wait for GK programming to be done. Then when ready, some more happy juice so I could almost sleep thru the GK. Had the Perfexion unit, so vey comfie, played my choice of music.

Then when done, back to room and head frame removed; again, no big deal. Have a headache, soreness at pin sites, one worse than others and is oozing a little. Headache improving as I write this.

Just ate some lunch and feeling better.

We have to leave for airport tomorrow at 5am for 7am flight back to SoCal.

Thanks to everyone for the good wishes and positive thoughts!!!!

[cindyjarrett]

Robin,

So glad to hear that everything went smoothly.  I knew you would do great.  If you have any questions about anything later, let me know.

Cindy

[millie]

Sounds like a very very positive experience.  Yay for the good guys!  And for happy juice.

[robinb]

Thanks all for the support.

Yay for the Happy Juice is right.

Well happy juice and local anesthesia all worn off now. I can report no headache, just some soreness areound the pin sites and one of them still bleeding a little.

Since we have to leave htel at 5am to catch 7am flight,  not going to take off bandaids till we get home. My husband braved the cold to go find me a wide headband for me so I can put over them!

I had planned tomorrow off and back to work on Monday. However, I have the luxury of working from home when I am not traveling and have no travel scheduled till end of February as of right now.

No change to hearing and still have mild tinnitus. Nothing unexpected.

Thanks everyone for the encouragement.

[robinb]

Arrived back home today.

Feel great, just tired.

Removed bandaids on forehead, the pin sites just look like a scab was peeled off. No big deal. Pin sites still sore and when I washed my hair, I realized my scalp is still a little numb.

Nothing more to do now, hopefully, till my 6 month MRI in July!

[robinb]

Well, an uneventful end to day three as a postie toastie.

I forgot to mention I also was given another round of steroids due to my fluctuation in hearing and positive response to previous rounds. I started yesterday morning and have had zero tinnitus and I could swear my hearing has improved. I downloaded one of those hearing test apps, will try it tomorrow. Anyone think these are a reliable indicator?

Soreness subsiding around pin sites and almost all scalp numbness gone.

One day at a time, will be marking them till my six month checkup.

I respect and admire those that have gone through surgery and its complications. I know I made the right decision for me in ruling out surgery and encourage anyone on the fence to reach out and I will share all the research I had done prior to choosing GK. Ultimately, I think the various radiation options are good, I chose GK due to its simplicity, time involved, historical data and experience of doctors. The head frame was the biggest issue I had to overcome, and as a wimp in dealing with pain, I can say it was painless! It was on amd off in less than 5 minutes before and after. Longest time was spent waiting for docs to program GK unit for my tumor after the MRI.

Back to work tomorrow and to the gym on Tuesday!

Thanks again to all that shared their experiences with me and gave encouragemtn and support.

[MDemisay]

Dear Robin,

Thanks for posting your experiences, it is your way of "paying it forward" and it is helpful believe me! As you wait for your 1st MRI check up, please post often!

It is helpful to those newbies who have not made a decision yet whether to opt for surgery or to do as you have done with the less invasive Gamma Knife.

You go girl! Woo hoo!

Congratulations!

Mike

[robinb]

Hi Mike-

Thanks for the support!!

I read all your posts and your most recent on why you chose surgery. You have been through a lot.

My first inclination due to small size of my tumor was to "watch and wait" Every doc I consulted with asked me the question "What are you watching and waiting for?". So watch and wait lasted all of two weeks.

I will continue to post periodically, even if there is nothing to report as, often, no news is good news!

[MDemisay]

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

[dtorres135]

This journal you have posted has been a great insight for me.  I started out the surgery route but really seriously looking into gamma knife with dr. Kondziolka.  Any feedback on his work?  Please advise.

[robinb]

I am so glad to help someone else going down this path.

I sent my MRI to Dr. Kondziolka and he was my first choice based upon my research. Spoke with several former patients and had lengthy email exchange with him and personal conversations. He spent about 20 years at UPMC with Dr. Lunsford and was the public face of their GK program and co director. The only reason I didnt go to him was the hassle of NY/NJ facility due to the GK at NYU destroyed by hurricane. Then I found out he was set up for any insurance yet and would have to be out of network, which just didnt work for me. Once I made my decision on treatment before Xmas, I wanted to get it scheduled and his office said they wouldnt have insurance set up for another 4-8 weeks.

So I went to Dr. Lunsford at UPMC, no regrets here.

Dr. K is doing GK in NJ and I do know that the GK equipment at Hackensack is the latest upgraded Perfexion model. UPMC is a few years old and is awaiting the upgrade. No real big deal, except the treatment could take 10-20 minutes longer from what I was told.

When I told Dr. K I was going to UPMC he was very supportive.

If you want to talk, send me a PM with your contact info and I'd be happy to call/email you directly.

[Petrone]

Hi Robin,

Thanks for sharing your personal GK journal. I have scheduled GK for myself this April after my AN showed growth from 1.4 cm to 1.8 cm on my annual MRI last October. I am pretty hopeful that this is the right decision for me and my family (wife and 2 teenagers), but it helps to hear that your experience has been positive.

Please keep us updated, as you are able. 

Thanks again,
Petrone