Life after Gamma Knife

The proceedure was done in April at Mayo

 

Sorry about the delay, the left side of my face decided to turn to fire for a couple of minutes. I will just check another tn forum i am part of. I think someone on that forum has had Gamma Knife like you. I will get back to you asap.

 

After checking, i find i am mistaken. Someone on this forum has had gamma knife i beleive, though. You will probably get a reply shortly from at least one of them. I am hoping to have Gamma Knife shortly myself. Just negotiating with the doc at present. I have to pay upfront and then Medicare gives me (most) of it back 7 weeks later.

Thank you for your help! I can gladly give you tips on the actual proceedure but not the financial part! Luckily I have great insurance!

Gamma knife is really not bad at all once you get past the placement of the head frame.I had to sit in the head frame for 6 hours waiting for the machine so I have plenty of tips and tricks! Just make sure you keep on the nurses to make you comfortable.

Thanks. I would be very interested in your experience with it from start to finish. Just got back from Sydney where the Gamma Knife team has accepted me as a patient. They will call me in the week coming with my appointment to get it done.

The headframe is the worst part. When they place it, even with the numbing, it feels like your head is about to explode. Then you have to sit in it for 3-6 hours and wait for your turn in the machine, depending on how many other patients are scheduled that day. I had to sit for 6 hours before I got in the machine so the back of my head got very bruised from laying on the screws so long. After your frame is placed they do your CT scan and MRI, then you sit and wait. The radiation part is cake. It's almost exactly like an MRI but you are screwed in. After the radiation has been done they take off your frame within a few minutes and you are headed back up to recovery. I was nauseous and very tired so the nurses pushing me to eat were a little annoying. Keep up on whatever comfort meds they give you for sure and make sure you are hydrated the night before. And that is it! It really is more scary in theory than the actual proceedure is!

I had a very nice woman answering questions for me the month before I went in and it help quite a bit just to know what actually happens so if you have any further questions feel free to ask!

hi again,

can you tell me whether they expected you to go off medication straight away after the op. Are you off medication now? How are you feeling, any better ? or worse

I was told it may take up to 6 months before you feel "results" and can get off medication.  Summers are usually painless or minimal for me so it's hard to say if it is that or the gamma.I have gone off everything but my tegretol and even that I am on a half dose. I have had spurts of numbness or tingling lately. Other than those things I don't feel any different (other than not being riddled with pain!). I can actually feel things and I am not constantly drowsy which is amazing!

The week- month after the proceedure I was completely exhausted and constantly felt like I was out of breath but that subsides. I also lost my appetite for a while between stress and recovering.

Thank you so much for the info. Currently i am flying backward and forward to Sydney for pre op appointments but the op itself has been scheduled for early next month, quite traumatic as i hate flying. Its winter here so i can only go out for about 2 hours each day as the pain starts up if my face gets cold. I might be 62 but i'm not ready to be house-bound so i am hoping for some relief. I have noticed the absence of much pain across the summer too. Its a bit like being a bear and having to hibernate in the winter..

I know the feeling! I have been dealing with my TN since I was 13 so I am definitely ready to feel some relief and negate medicine for a while! Let me know how things go and if you need any more reassurances I am happy to help!

 

Hi, I am just back from Sydney after having the Gamma Knife. They only do 2 people per day it seems and I went in at 7.15 to have a room and a nurse assigned to me. There was a nice man in the cubicle next door who was from Laos who was having the same op as me. Morning tea was served at that poin after which the  nurse took a few obs and then i was asked a few questions and then in came the neurosurgeon with 3 more members of the team and they started doing the injections of the anaesthetic. Next thing i knew they started screwing the titanium frame into my head, a very odd experience.  They spoke to me a bit then fitted the perspex cover to make sure it fit over the metal frame. There was a bit of time to zip in next door an speak to my new friend who had also had his frame fitted. Then i was taken by wheelchair  to have the MRI and CT scan after a bit of waiting around. A  after those were finished i was wheeled back to my room and some lunch appeared. We had to hang around a bit then while they decided on the correct thing to do and spoke to the radiologist and then it wasnt long before i got wheeled into the room for the Gamma Knife to be done. They screwed the headframe into the machine, and it all began. I didnt like any of it much but better than some options i imagine. I was in the machine 3 and a half hours apparently. Then the neurosurgeon appeared with his backup men and took the frame off and bandaged me up tightly. I was taken back to my room for a while to see how things went and offered more tea this time with a biscuit. I felt ok (although shell-shocked) and they let me go back to my hotel by wheelchair by one of the porters. I woke in the morning  and the hotel's pillow was blood-soaked as the bandages had come off but hospital said to come over and they would re-bandage it. The doctor gave me a note to say i could fly back to Adelaide. My head was very numb and i was very very sleepy. All seems good now but i am still totally exhausted. It was a very strange experience and i am now just waiting to see the results of it. The guy in the next room emailed me today and said he is ok also but with a numb head like me.

Sounds like my experience, except I wasnt allowed to eat or drink from 5am until afterward which was about 1:30pm!

Following the numbing expect some tingling and maybe even sharp pains on your scalp. I had about two weeks of both at the pin cites and the back of my head was sore for a good 2 months. Medrma works wonders for the scars and you can get it at most drugs stores. Glad to hear you made it through! Now for the waiting game, which can be worse than the actual proceedure!

Hi Valkyrie I was wondering where you had the gamma knife surgery done. I am in Qld and that particular procedure isn't available here.. My dad had nerve decompression ( with the craniotomy) a few years ago in Melbourne.While it was successful and he hasn't had a twinge of pain since he did have lots of complications with a staf infection and ended up with several more surgeries and even rehab to learn to walk and talk again. Because of that I am really reluctant to have that surgery and have been looking at the gamma knife surgery. I wondered if you would mind saying where you had the surgery?

Thanks

Sorry, for some reason I didnt get notification that you had asked a question. I had Gamma Knife at the Macquarie University Hospital in Sydney with Dr Fuller

Hi I realise this is an old discussion but I'm hoping you still frequent here.

I am scheduled for Gamma knife with Dr Fuller On the 6th February 2017.. 

would love to ask you some questions..