What were your experiences with the head frame for Gamma Knife?

I had Gamma surgery last year and I felt the same way you do. Luckily, Jill, (one of the group members) told me exactly what would happen and it helped me a lot. From the time you get to the hospital, you will have a nurse with you. She never left my side and even walked me to the bathroom. When you arrive, you have to put on a johnny. The nurse puts in an IV and I got something to relax me. Then the neurosurgeon comes in to put on the helmet. The only thing that hurt was the injection of lidocaine when the surgeon was putting in the screws to hold the helmet. Once the helmet was on, I had no pain. You can see fine and it is not heavy. It is a little uncomfortable After the helmet is on you have an MRI to allow the neurosurgeon, physicist, and radiologist plan where the gamma rays will be sent. Then you have to wait for about 45 minutes while they calibrate. At that point, I was nervous and asked for more relaxing meds. I am on medical marijuana and took some CBD. It relaxed me. I am sure they will give you something to relax you. When they are ready, the nurse will wheel you -in your bed- to the gamma room. The machine is similar to an MRI but bigger. The physicist put my head in a something that prevented me from moving and my arms were tied down. I didn't like that but the meds kept me calm. They played some music and said if I needed to come out of the machine, they would move me. But I just wanted it over. There was no pain and it took about 30 minutes. Then I was wheeled back to my room and the surgeon removed the helmet. Once again -no pain. I am on eliquis so my pin sites bled a bit. I had a headache and some nausea when the helmet came off. The nurse offered me something to eat and I took saltines and ginger ale and she gave me something for the nausea. You are in recovery until you feel better and then you go home. You are supposed to rest for a day or 2. It was really easy. I had the nurse take a picture of me in the helmet! I hope this helped.
Joan

I had Gamma Knife in April of 2020 for bilateral Vestibular Schwannomas (an acoustic neuroma on both sides) at Mayo. I deal with some mild anxiety and take meds for it, but not very much with medical procedures. When I got to the hospital they had me change into those stylish hospital clothes, gave me something to relax (I believe it was Ativan) and Tylenol, and put in an IV. They then brought me to the waiting area of the procedure. The thing I really appreciated is that everything was explained to me in detail several times by several different staff. They said they would never do anything to me without explaining it to me first and followed through on that statement. The worst part is having the numbing injection into the sites that the screws go into. That was pretty painful, but maybe for about 20 seconds. They had two doctors, one on each side of my head and did the injections at the same time. So, they both injected in the front and in the back. So it went quick. Before they even started injecting, I realized my nurse, who was with me the entire time, was holding my hand. That was soothing and I was grateful for that. She was a fabulous nurse. I call her my angel nurse. Screwing the frame in does not cause pain, but you do feel pressure. A lot of pressure. It was uncomfortable and I wondered how much pressure the human skull can withstand. Fortunately, the pressure is only felt for 5 or 10 minutes. Then you get used to the frame and don't feel it any more. Next I had a brief MRI and CT. When I was wheeled into the room where the actual gamma knife procedure takes place, I had to lie down so they could lock the frame into a groove on the table. I had to relax my neck so they could move my head to position it just right. I found that to be difficult. I don't remember my arms being made immobile. My procedure took 77 minutes because they were treating two tumors. The worst part of that is that I got bored. I rarely sit or lie down without having something to do, so lying for that long was tough. When they were done they wheeled me back to the waiting area and took my frame off. That was super easy. I did bleed a little. Then they wrapped up my head with gauze. I had a 5 hour trip back afterward so I looked a sight when we stopped at a gas station. It made me laugh. I got to go very soon after the procedure, because I looked good to them. I felt fine too. I didn't have a headache or nausea. I did have tingling on my head for a long time as the numbing stuff worked its way out. I also had major tenderness at the sites of the screws for a couple of weeks, at least. They told me, I could swell and turn black and blue, even getting swollen black eyes. I had a little swelling and very slight discoloration. If you didn't know me you probably wouldn't have even known I had any swelling at all. I do have scars and slight indentations at the site of the screws in my forehead. Overall it was a pretty easy procedure to go through. I have had many, many medical procedures over the years due to multiple health issues. I generally don't have too much anxiety, but I find humor helps ease what anxiety I have. The more nervous I am, the more jokes I crack. I wish you the best of luck with your gamma knife. If you have any other questions please feel free to reach out to me. Oh, I too have a picture of me in the head frame. They have a Polaroid camera at Mayo that they will take a picture with if you want one. When I shared the picture, someone commented that even with a mask on and a head frame on my eyes were still sparkling. I guess that was and indication of how I was feeling once the frame was on.

Hello @mountainseeker

I applaud you for taking the time to see a therapist regarding the anxiety you are experiencing about your upcoming surgery. That is such a wise approach this, especially given your father's history of a brain tumor.

I hope that the posts by @ellene and @jmb73 have given you some idea as to what to expect and relieved some of your anxiety. I see that your procedure is scheduled for Monday.

Will you post again with any questions you might have? I also hope that you post after your procedure with an update. We look forward to hearing from you again.

Thank you @ellene and @jmb73 I appreciate you sharing your stories and they are a big help, more than I can express!
I have had many painful procedures this year, multiple EMGs and Nerve studies as well as nerve biopsies. I was a little nervous going into those but not nearly the same as having the head frame. The numbing for the nerve biopsy hurt almost as much as the some of EMG/Nerve study spots. I think one of the things that is making me nervous is the times when I’ll be in the MRI machine, and in the Gamma Knife machine when I have nothing to do, afraid I’ll start focusing on the head frame and work myself up. I also worry about the time in between while we wait for the doctors to figure out the plan of action, my mom is going to be with me and I worry about her as well because she has the same horrible memories of it and anxiety. I worry that it will be harder on her to see me in it than it will be for me wearing it and because of COVID we can’t have someone else there to take over if she needs to leave or to be there for her while she waits.

@ellene I also struggle with sitting still, I suffer from Hypersomnia; we can’t stay awake so we often become super active just to try to stay awake.
Thanks for sharing about the pressure feeling, I hadn’t thought of that and it would have caused a bit of panic - like you I probably would worry about how much pressure can the skull take; I’m sure I still will but now I know about it, can reassure myself that it’s normal and prepare myself. Your comment about stopping for gas on the way home made me laugh, lol gotta wonder what people thought. Didn’t even think about bruising or black eyes, if they stick around very long I’ll have to come up with a ridiculously silly story about how I got them when somebody asks - pirates popped into my head. That’s wonderful about your sparkly eyes with the head frame on, I will have to get a picture as well though I don’t know if I’d want to look at it until long after this is all over. I bought some fake mustaches, thought I might stick one on the frame, lighten the mood.

Joan, I usually am that way as well just get it done with, rather not stop. Interesting to hear they strapped your arms down, I didn’t know that. That’s would be very upsetting and understandable why you didn’t like it. That wouldn’t be something I’d like either, but knowing it’s a possibility helps tremendously. I can just imagine what my anxiety level would be if they just sprung that on me, usually goes away fairly quickly but not a fan of those kinda of surprises. Having some time to cope with the possibility makes a world of difference. Ugh, I hate getting IVs, I knew I would have one but the anxiety over the head frame was taking all my attention and I keep forgetting about that part. So thank you for reminding me, so that I can ask for the nurse that does the hard patients so that they only stick me once (hopefully) - I’ve threaten to walk out, that they get one chance so they better make it count - not sure if I’d actually do it. I’d probably just want to get the whole thing done and over with, but they don’t need to know that. Lol.

Thanks @hopeful33250, I can’t think of any more questions right now but will post again if I do. I will also follow-up sometime after it’s over with an update.

Thank you all again.

@mountainseeker while having the procedure, for 77 minutes, I could hear my pulse beeping on the IV machine. To entertain myself, I tried to slow and speed up my pulse. When they took me out of the machine the radiation oncologist remarked that I was holding quite still and she asked if I had fallen asleep. I told her that I was awake, but in order to keep myself entertained, I had tried to lower and speed up my pulse rate. After I said that the entire room went silent. You could have heard a pin drop. I laugh about it. Apparently, no one has ever said that before. I found I could lower my pulse rate by consciously relaxing. I had to work at it a bit. I couldn't make my pulse rate speed up, but as soon as I quit focusing on the relaxation, my pulse rate returned to normal. Maybe it isn't something they would want you to do, but it did keep me entertained and somewhat relaxed during the procedure. I have also had some really long MRIs. I have done some goofy stuff to keep myself entertained. When I was a little girl we had a story that was written much like the song "There was an Old Lady Who Swallowed a Fly." I tried to recite that entire book from memory, to myself of course. Nothing out loud. (I wasn't supposed to move me head not to mention that I would have embarrassed myself beyond measure.) I even started singing, in my head,100 Bottles of Beer on the Wall. I do some writing and I wrote about that experience but I can't seem to find it right now. I think it was called 10 Things To Do While Lying in an MRI Machine for 2 Hours. Something like that. You've heard enough from me. Just thought I would throw out a few of the strategies I used to keep entertained in that kind of situation. Again, best wishes!

Hello @ellene,

You certainly have developed some ways to entertain yourself in the closed-in situations that modern medicine has provided! I've employed some of those myself. Reciting (silently, of course) songs, hymns, poems, etc. Often, I have put myself to sleep.

You have given @mountainseeker and the rest of us some really good tips on how to endure times while we are constrained and can't move around. I might also add to @mountainseeker, that the anesthesia folks who assist in this type of surgery generally have a good idea of how to keep us quiet so don't worry about squirming, they will undoubtedly take care of that.

Wishing you (and your mom) well on Monday and I look forward to hearing from you when you can post an update.

@ellene you crack me up, I can just envision the look on everyone’s face when you said that. I might try that, my therapist had me write down a story of a happy memory and told me to recite it in my head during the procedure. I’m not entirely sold it will work, but something like what you did controlling you pulse rate, that I can see keeping me more focused, it’s more tangible and I’d have to focus on several things as well as problem solving - figuring out what lowers it. Plus I could set goals. I’m sure they rather I not speed up my pulse so if I do it I’ll aim more for lowering it.
I’ve only had a few MRIs and not very long ones luckily, usually I do the same sorta things mentioned sometimes recite songs but usually I invent a story in my head. However, one of them I had this year was in a older machine; it made much different and worse noises than what I’ve experienced before. They all make loud clunky noises, but this one kept changing; don’t know if it was the frequency or the pattern of the noises but one cycle it would go through I could feel my blood pressure and anxiety go way up. I’ve never had a problem before but I almost had them pull me out whenever it started that series of noises, didn’t have a problem with any of the other strange noises it made (and it made a lot) just that particular set. About that time is when they pulled me out to give me the contrast, and told me 5 more minutes. I laid there and counting it down, it did the trick to get me through - it went longer than 5 minutes, much longer! I was counting very very slowly as I wanted to be done before I’d counted it all the way down. I stopped counting at 10 minutes so can’t say how much longer it took. I had an MRI, not long after that one and it was what I was used to, so it was just that one machine. Luckily that MRI machine broke not long after and they had to get a new one. Interestingly I also heard that the MRI machine at the other facility also broke not long after I was there. My Mom said I must have broken them lol, my response was if so they are in trouble because they are going to go through a lot of MRI machines since I have to get regular checks from now on!

Thanks for the support and laughs!

Good luck on Monday. I think you will find that it's a pretty easy procedure. Please keep me posted on how you did. Joan

Hello. My name Is Jill I had gamma knife radiation in August, 2017 for two recurrences from a meningioma which I had surgically removed in 2001. My original meningioma was large, about the size of a small orange. I had the surgery in Atlanta where I live. The recurrences were small but one of them was very elongated in size going from behind my eye to behind the top of my nose and it was in an area that would have been very risky to remove surgically. I had an MRI in Atlanta in 2017 because I was having a lot of vertigo. The MRI showed I had the two recurrences. It turned out it had nothing to do with having vertigo. I went to two neurosurgeons in Atlanta for recommendations on treatment. One recommended surgery on one of the recurrences in order to biopsy it and cyber knife on the elongated one. The other surgeon recommended gamma knife on both recurrences. I was uncertain which direction to take, so I self-referred myself to Mayo in Rochester, MN. The neurosurgeon I saw there, and the radiation oncologist, both recommended gamma knife for both recurrences. I had it done there and I am so glad I did. I have MRI's annually now to follow-up on the recurrences. I had the first one in 2018 at Mayo and I had the 2019 and 2020 in Atlanta and sent the CD to Mayo for review. Each MRI I've had since I had gamma knife shows the recurrences are stable; no growth at all and one is even a fraction smaller.
At Mayo in Rochester, they have one gamma knife machine, and on the day I was having the procedure they were doing 5 patients including me. We were all told to arrive at 5am. After checking in, I was taken to a small room to change into a gown and was giving a mild sedative (so mild, I never even felt it). My husband stayed in that room all day while I had the procedure. I was taken to the radiation dept around 6am. The first they did is put the helmet on. It only took a few minutes. There were two pins put in my forehead and 2 pins behind my head above my neck that secure the helmet to your head. Before inserting the pins, I was given a numbing injection in each area where a pin goes. For a few seconds, I felt pain from the needle going in my forehead. Seriously, just a few seconds. The numbing drug is so fast acting that I didn't feel anything after that other than pressure. It felt as though someone was pressing on the sides of my head. It wasn't painful. It just felt tight and like pressure.
The helmet is not heavy. Your view is not obstructed You can move your head except when in the MRI and gamma knife machine. I had no idea what it looked like until I needed to go the bathroom while I was waiting for it to be my turn in the machine. When I saw the helmet on my head in the mirror over the sink, I felt a little queasy, but I get queasy easily from anything to do with needles, even just from having a blood test. By the way, my father also died of a malignant brain tumor. It wasn't a meningioma. It was a malignant astro cytoma.
After the helmet was put on, an IV was put in. It's to give a small dose of steroids to prevent swelling of the brain from gamma knife. Then I was given an MRI. I don't recall if it was with contrast. If it was, that was also done through the IV. The MRI was only lasted 15 minutes so it's much quicker than the usual brain MRI. The helmet is attached to the MRI table so you cannot move your head at all.
My doctors had explained to me in advance how they decide the order for the 5 patients to go in the gamma knife machine: if there are children and senior citizens, they go first. Then patients who need to be in the machine the shortest period of time are next. I was the last of the 5 because I had to stay in the machine for two and a half hours to accommodate the elongated meningioma. The helmet is attached to the table you lie on in the machine so you cannot move your head. I was told it's OK to move my arms and legs. The gamma knife machine is larger than an MRI machine. I am very claustrophobic in an MRI machine but I wasn't claustrophobic in the gamma knife machine. There is more space above your head and on the sides of your body. It does not make any noise and you don't feel anything at all from the machine. I only wish I had asked for a sedative so I could have dozed. I was wide awake the entire two and a half hours. The only way I could tall how much time had passed was to ask the physicist who was at the controls. I recommend you ask your doctor for a sedative if you are going to be in the machine for more than an hour.
As soon as I was taken out of the machine, the nurses removed the helmet. For the first few minutes after it was removed, I still felt pressure as though it was still on my head. The nurses said that is very common. It's also common that you may have a little bleeding at the pin sites. They put a bandage around my head that I wore for about an hour. When I removed it, I was not bleeding at all. I had a bad headache from the pressure of wearing the helmet all day since I was the last to go in the machine. I had it on from around 6:30am to 4:30pm. When I got back to my hotel, I took one of my migraine pills and that took care of it. After the helmet is removed and the bandage put on, they took me back to the room where my husband was. The nurse checks your vitals and asked if I wanted anything to drink or snack on. They kept me for about an hour and a half, checking vitals and to make sure I was OK. When I was released, other than a headache, I was fine to walk from the hospital across the street to our hotel.
The next morning, I was very puffy under my eyes. The neurosurgeon had told me to expect that. He said it's fairly common. I think it's from the numbing drug, not from gamma knife itself.
I wish you the very best. Please feel free to ask me any other questions you may have. I hope you will let me know how it goes and how you are doing. My best,
Jill

Hi Jill, You explain everything so well. You did for me last year and it helped so much. I am sure it will help mountain seeker. Have a great day everyone.