Home from Stanford

[darkorchid12]

Hi,

Well I am back home from Stanford.  I will start by saying a few very positives about the experience, from the doctors, nurses and office staff all were friendly, helpful, and compassionate.  The treatment itself was painless, except that halfway through the last one my nose started itching!

I stayed at HOME Apartments.  They were just across the street from the hospital so I walked to and from visits.  Excellent location and again really great staff.

Afterwards and now at home I have really low energy. Yesterday was my first day back at work and I didn't make if through the whole day.  The staff at Stanford had told me this might happen.  Plus I am still getting wonky headaches.  Wonky because having been a migrainer for so long I know that these headaches are different, in location and type of pain.

I really do believe this was the right course of action for me.  I now at least feel like progress has been made.  What the future holds one cannot know, but I have follow up MRI in 6 months so time will tell!

Best wishes for all of you in your journey through the maze!

[kejac]

Congrats on completing your sessions. I'm glad things went well and six months will fly by.

[v357139]

Congrats on getting your treatment.  It can be a maze, it certainly was for me.  On your current issues, I have seen similar in other posts.  And I have seen that over time those people have gotten much better, and usually their tumors did stop growing after radiosurgery, and they did return to normal life doing quite well.  I am sure you will also.  Hang in there for now, and best of luck.

[darkorchid12]

It is just two weeks back from my CK treatment and thought an update might be helpful.  The first week back I was getting some weird painful headaches (lots of burning feeling) that disrupted sleep and a lot of vomiting. Quick trip to ER to get those issues under control then on the phone to Stanford.
Their response was to get me into a short cycle of steroids and antacids which at this time have stopped the headaches and stomach issues.

One sidebar to this is the energy thing. By the end of the day (3ish)I am completely wiped out.  I also feel kind shaky. So perhaps part of this too?

I have returned to full work schedule also.

If anyone can weigh in on similar issues it might be useful

I do want to add that without this marvelous forum and all the great folks here  I might not have gotten  the treatment for my Trigeminal Schwannoma (on the nerve and not in the ear). Stanford has been an amazing experience.

So thank you from a distance to you all.

[Echo]

Exhaustion was one of the biggest issues I had to deal with post GK.  The entire first year was challenging for both exhaustion and balance issues. I learned very quickly that if I paced myself and got the rest I needed then life was better.  I found taking daily naps or rests at noon to be what worked for me. I would listen to meditation recordings on my ipod for 10-15 minutes with my eyes closed and feet up. I couldn't get through my work day without taking those breaks.  I still take the time at noon to rest - not every day, but definitely several times a week.  When you are used to going non stop, learning to slow down and allow yourself the time you need to recover from GK or CK, is very important.

Cathie.