My watch and wait has come to an end.

[wind6]

Hi all, I haven't updated in a while but think now is the time. My tumor has grown to a size that requires treatment....again. I wish I had some special words of wisdom..something really profound to say but the only thing going through my mind right now is that I am scared.  I will be having Gamma Knife this time and I hope it goes as well as all the literature claims it will. My team is at Chicago Northwestern this time. They seem really wonderful. The surgeon made one comment that keeps resounding in my head...he said, "you know you have fought this thing for eight long years...lets fix it once and for all." God please let that be true.
The only measurement I know right now is that the tumor17mm in length. Anyone here have surgery first then Gamma Knife? Any advice? Can anyone tell me what to expect the day of treatment? I will be three hours from home. Will I be okay to make that trip immediately? Can anyone tell me about putting the frame on? Will I be awake? I am scheduled for 6:30 AM on July 10.

[arizonajack]

Anyone here have surgery first then Gamma Knife?

I haven't. But I suspect you'll get some responses shortly.

Can anyone tell me what to expect the day of treatment? Can anyone tell me about putting the frame on? Will I be awake?

Those questions can be best answered by your doctors.

But here's how my day went. I had my GK locally. I got up at 4:30 AM. My friend picked me up and dropped me off at the hospital for a 5:30 AM schedule. I sat for about an hour waiting to be admitted. There were others ahead of me. After being admitted I was taken to a room where I changed into a gown and got on to a gurney. An IV was started and I was put to sleep for about 20 minutes while the headframe was put on. When I awoke my scalp was numb from the local so I didn't feel any pain at all. I went for the MRI first and then the GK. The procedures were quick but there was in-between times. I was done about 1 PM, had the headframe removed, got dressed, got picked up by my friend. I felt fine but was just tired from the long day. We went to lunch and then got dropped off at home where I just chilled out for the rest of the day. Next day things were back to normal. Scalp numbness wore off in a day or two and the soreness from the pins went away after a week or two.

I have read some people get put to sleep for the headframe and others don't. So that's really something to ask your doctors.

I will be three hours from home. Will I be okay to make that trip immediately?

While you might be physically capable of making the 3 hour trip, I don't advise doing it by yourself. You'll be distracted both ways and that's not good.

[wind6]

Oh Thank you, thank you. The head frame scares me about as much as anything. You would think this is a walk in the park after my last surgery but for whatever reason I am feeling wierded out by this.  Hopefully I will sleep through that part too.

[arizonajack]

The head frame scares me about as much as anything.

It does look like some sort of medieval torture device.

You'll be fine.

[Echo]

Hello Wind6,

If you go to the Radiation section of the discussion forum, there is a post by Robinb "My personal Gamma Knife experience."  There are several replys to this post.  All replys are positive about the head frame being not nearly as bad as anyone expects it to be.  These comments are from folks who were not put under a general anesthetic to have the frame attached but they were given meds to help make them comfortable.  I hope their comments help give you some piece and encouragement.

Take care,
Cathie.

[mesafinn]

Hi Wind6--

Hello to a fellow Illinoisan.  I'm originally from Chicago, and you will be in good hands at Northwestern (a great hospital and medical team). 

I did not have much trepidation about the head frame but understand why some might.  Overall, the experience was anti-climactic, which was a good thing.  They will, at a minimum, numb the areas before applying the frame, and they would likely give you some antivan or something similar upon request.  But as Arizona Jack suggests--be sure to ask how they will approach it as it's not done the same everywhere.

The treatment itself is quite quiet.  The frame is the most "dramatic" moment, and the rest of the experience is fairly smooth.

I encourage a companion to drive you back to Springfield, but the worst part of the at 3-hour drive will likely be negotiating Chicago traffic as you depart!  But I did a 4-hour drive the day after my treatment so it is possible but not advisable.  I suggest staying over in Chicago (I was required to stay the rest of the day for monitoring) the night of your treatment day.  Gain what strength you can!

If you have more specific questions, feel free to PM me, but I know you will do great!!  All the best on the 10th!!

P.

[robinb]

Hi Wind6-

The headframe is what seems to petrify everyone and has been deciding factor for a few I spoke with to have CK instead of GK.

I was so stressed about it, the docs and nurses knew. My pre op nurse said I wouldn't feel a thing and if I did, raise a finger and they'd address it. Had quite a nice cocktail in the IV, I remember almost nothing from it going on or off. I slept through most of the MRI and GK too.

I went to UPMC and I live in CA. We flew home the next day. If you re not driving you could handle the 3 hours as a passenger and probably sleep. If you can wait till next day, even better, but still I wouldn't recommend driving yourself.

All the best.

[Nannybee]

I was awake but sedated for the head frame placement. It wasn't as bad as I feared, the neurosurgeon gave me a good dose of anesthetic at each pin site. It felt a bit as if my head was being squeezed while it was on. The pin sites oozed the first night, but then were fine. Hardly noticeable scar now. I did lose a little hair at the treatment area in the back at about the 2-3 week mark, but it's starting to come back.
Good luck!

[wind6]

Thank you all for your comments. I have a plan to stay over and have family members going with me to do the driving. I suppose if I was able to go through actual surgery the last time, this should be a piece of cake. I'll be glad when it's over. 

[wind6]

It is official. I made it through and am back home safely. I am experiencing some fairly intense swelling around my eyes but, over-all...I wish I could have done it this way the first time. I want to tell each person here how very grateful I am to have this site. You have been awesome support. Many hugs and much love.

[cpollard]

Thank you so much for sharing - approx 7 years ago I had a 4cm one mostly removed by surgery and now my latest scan showed it was around 2cm and will require radiation or something (undecided yet). So it was nice to hear its all gone well for you x

[wind6]

Thank you so much for sharing - approx 7 years ago I had a 4cm one mostly removed by surgery and now my latest scan showed it was around 2cm and will require radiation or something (undecided yet). So it was nice to hear its all gone well for you x

I am so happy this post helped you a bit. You certainly do understand where I have been. If you would like to ask anything at all I would more than happy to answer whatever I can.

[Gloria Nailor]

wow - I am jealous, I was awake for the placement of my GK headframe and it was not a very pleasant experience.  Once it was on I felt fine, but feeling the lidocaine spread throughout your scalp was very uncomfortable, the tightening of the screws was not painful at all, but very weird hearing the screws tighten.  I cried after it was placed but not from the pain, I just thought "what else does God think I can endure" - then I was taken to the waiting room and saw my son and husband and thought I can handle whatever else I have to go through for these guys : ) It's amazing how you can find strength in those you love.  So glad it is all behind you.  I had mine done 7/30/13 at Tufts in Boston