Had Gamma Knife yesterday - UPDATED 3 DAYS POST GK

[proudmomof3]

AKA: cpayne 101 (changed my user name)

I just wanted to share my experience with everyone. I had Gamma Knife done yesterday on my AN.

The team was exceptional, the nurses were great and I have absolutely no complaints at all. I would highly recommend Dr. Sahni (Richmond, VA). The worst part was not putting on the helmet (as I had anesthesia for that), but taking it off. It was the worst pain I have ever experienced. But right after that, they gave me pain RX in my IV and within 5 minutes I was feeling nothing, and have not had any pain since, other than extreme soreness from the pin holes.

Today, I feel pretty good. I am on steroids, and they have made me very nauseaus and I cannot sleep. I am very restless. As far as my head, the pinholes are so tiny you can hardly see them. I am shocked at how small they are. I saw the screws when they removed them and they were HUGE. I have no idea how I could have such tiny holes from the large screws.

The whole staff made sure I was comfortable, I had my own suite where my parents and husband could sit and stay with me, and it was a really nice, clean room. They fed me a snack after the helmet was put on and I had an MRI. Then they planned the radiation which only took about 30 minutes, and I had 34 minutes of radiation. It was perfectly quiet, they even had stars in the ceiling that twinkled. I fell asleep and woke myself up in the machine snoring (lol).

I get my first MRI in 2 months, so we'll see how the tumor looks, but I am really surprised at how well I feel today. If it wasn't for the steroids, I would probably be out running around.

I just wanted to share this for anyone considering GK. My AN was small so I know it makes a difference in decision making, but I really cannot express how impressed I was with the entire staff and Dr. Sahni.

Hope this helps someone.

Cheryl

UPDATE: DAY 3 PAST GK - VERY DIZZY AND NAUSEAUS. I THINK DUE TO STEROIDS. SPOKE WITH NURSE AND SHE AGREES. MY HEAD IS SORE FROM PIN SITES, BUT OTHERWISE STILL DOING WELL. I HAVE NOTICED NO CHANGE IN HEARING/TINITUS, BUT NOT WORRIED AS I KNEW THAT WOULD NOT GO AWAY ANYTIME SOON, IF AT ALL.
OF COURSE, BAD LUCK HAS IT THAT MY A/C BROKE DOWN YESTERDAY SO MY HOUSE IS FLAMING HOT!! DOESN'T GO WELL WITH DIZZINESS/NAUSEAU. OH WELL, COULD BE WORSE![/font]

ALSO FOUND OUT I DO NOT GET MRI IN 2 MONTHS -- DR SAID THAT WAS TOO SOON. I AM DISAPPOINTED IN THAT. I GUESS I HAVE TO WAIT 6 MONTHS. SO I WILL NOT KNOW ANYTHING FOR QUITE SOME TIME. JUST A WAITING GAME..[/b]

[Rivergirl]

Interesting experience.  You must be so glad it is over and you sound wonderful.  Best wishes for tumor shrinkage and be done with it

[Tod]

Congrats, Cheryl! I was wondering how things were going with you. I hope you have a continued good experience!

-Tod

[Phillies]

Hello Cheryl,

Sorry to hear you had some problems. Are you feeling better now ?

[Jim Scott]

Hi, Cheryl ~

Thanks for the update.  I'm sorry you have the dreaded GK 'pin pain' (and no air conditioning) but glad to learn that, overall, you're doing well.  Follow-up MRI scans are often done at 3 months but waiting 6 months is not uncommon.  It does take time for the radiation to have an effect on the tumor - and MRI scans are very expensive.  Many insurers won't pay for one if it isn't considered medically justified.  Unfortunately, with radiation treatment, it is a waiting game - but that is unavoidable.  I'm sure you'll do fine and your next MRI will show a 'dying' AN.

Jim

[Farmgirl88]

Hi Cheryl,

Thinking of you and hoping you are starting to feel better.  Kiddies will make 6 months go by quickly, so your follow-up MRI will be here before you know it!  Thanks for sharing your experience with us.

Kind regards,
Lori

[jaylogs]

Hey Cheryl! I hope things are going good for you at this point in time. Yeah, those steroids sure mess up the sleeping cycle, don't they?   Take care and keep us updated on how you are doing! Good luck!
Jay

[tizzautumn]

Why do you have to take steriods and how long will you be on them?