Just finished CyberKnife treatment

[jamie]

Today was my last day of CyberKnife treatment, it feels awesome having done something and I really hope I'm in the majority for whom it's succesfull. It was done over 3 days, just like an AN, but mine is a 2.3 cm jugular foramen schwannoma. After the first treatment I got a pretty wicked headache, but Dr. Kresl advised me to take a 200mg ibuprofen 3 x day, and that really helped due to ibuprofens anti-inflamatory qualities, without having to take steroids. The main symptom of my schwannoma was an earache, which started going away after the first treatment, and now is totally gone after the third. What an amazing machine! It was totally painless, except for being stuck on the table for so long. Also there was a strange chlorine like smell in my nose, which they say is due to radiation interaction with the brain, pretty wierd. I get my first baseline MRI in three months, Dr. Kresl says they will be looking for no change, and then shrinkage within the next year after that. Hopefully the fact that the pain the tumor was causing is gone, is a good sign. If anybody has questions about CyberKnife treatment, I'd be happy to share what I know. My email is jamie@sixline.net     

[jrhafer]

Hi Jamie,

Sounds like great news for you, and I am happy things are working out for you at this point.

One question, did you have tinnitus before your Cyberknife?  After your treatment, did this change, increase, decrease etc?

Thanks.

John

[jamie]

Hi John

I didn't have any tinnitus, but my schwannoma arose from a lower nerve than an AN. My symptoms were a bit of a stuffy ear feeling, but no hearing loss, and an earache. Any nerve deficits from my tumor would most likely be voice hoarseness or swallowing difficulties, but I haven't had either. They tested my vocal chords and they work fine. The earaches are gone and even the stuffy feeling is alot less noticeable. I think people are probably alot more aware of problems with higher cranial nerves since they have to do with hearing and balance.

[debora]

I truely wish the  best for you.  I had radiation for my small tumor October 5th 2004, my decision to go that course was my Nerosurgeon did both procedures and said that radiation was like taking an aspirin  versus major surgery with a lot of down time.  I was doing very well untill about 4 months to the day.  My husband and I and a couple of friends were out having dinner and suddenly the room was spinning out of control.  I tried to stand to go out side and fell on the floor. My husband picked me and and had me lay iin the booth thinking it would pass.  After a few seconds of laying there I told him I was going to be ill so he carried me out of the restaurant, I tried to lay in the car but it to wouldn't quit spinning so I lay down on my stomach in the parking lot while he went in to pay the bill.  I was violently ill all the way to the hospital and finally when they got an IV started with anitnausia drugs  did it quit.  I was hospitialized for 4 days and on many drugs for two months.  The doctors here had never seen someone so sick from radiation, at that time I went to the Mayo Clinic and they had me get off all meds, do physical therapy and let my brain train it self to take over the damaged side.  They also told me radiation can take 18 to 24 months to quit working.  Although I am better than I was it is a far cry from normal.  Most days I am not feeling very well, I force myself to work through it, some days I just have to go to bed.   The emotional toll of all this is overwhelming, I sometimes wonder how I am going to go on. 
I feel so stupid for believing that there would be no side affects and just want to warn you that there are some and to just be careful for the next few months so you are not caught off guard, I was very lucky to have family right by my side when this hit.

[jrhafer]

Hi Debora,

I am so sorry you are having problems.  I am two months post-Cyberknife treatment and I am wondering what to expect down the road.  You mentioned the Mayo Clinic.  Did you go to the one in Rochester, Minnesota?  Can you tell me if you had Cyberknife or some other form of FSR, and if so, what State did you have your treatment in?  I will not ask you the hospital you were treated in, only the State.

Thanks.

John

[jamie]

I truely wish the  best for you.  I had radiation for my small tumor October 5th 2004, my decision to go that course was my Nerosurgeon did both procedures and said that radiation was like taking an aspirin  versus major surgery with a lot of down time.

Your neurosurgeon was wrong to compare radiation to aspirin. I was told of all possible side effects, but they still paled in comparison to surgery.  

 
I feel so stupid for believing that there would be no side affects and just want to warn you that there are some and to just be careful for the next few months so you are not caught off guard, I was very lucky to have family right by my side when this hit.

You're not stupid for trusting a medical professional, you were just not properly informed. My schwannoma is not the same as everybody else on this board, it is on the lower nerves (glossopharyngeal, vagus, etc.). They are said to be alot more resistant to radiation damage than the nerves responsible for hearing and balance that AN's grow on, and nerve deficits are alot less noticeable and compensated for by the other side. So far the only side effect I have had, is some hair loss in a few dime size patches on the side my tumor was treated. I keep my head shaved anyway, so it's not as big a deal for me as somebody with long hair, and it should only be temporary. I hope you start feeling better soon. What have your MRI results been? Is it swelling due to central necrosis? The side effects you have had may be because of that, hopefully it starts to shrink and you should be over the worst.

[debora]

Hi John,

I had treatment in South Dakota, they used the Novalis unit on me.  My hearing in my right ear was gone and I had very loud tinnutius, it was the tinnitus that made me go in, I had ignored it for months thinking there wasn't anything they could do about it. That is when they found the AN.  Since the radiation I got most of my hearing back and the tinnitus is gone.  They couldn't believe I got my hearing back, but said I could lose it again.  I ended up going to the Mayo clinic in Rochester Minnesota.  I think I may be an exception with this Vertigo and nausia but I think it is important that others know about it so they can be on guard.  I hope the best for you, please keep us informed on your outcome.

Deb

[debora]

Hi Jamie, 

Thanks for your reply.  I had my last MRI in August, the tumor hasn't grown.  I am very thankful for that.  I had steroids because they weren't sure if the swelling was causing my balance problems, it didin't help, they don't think thats the problem.  I am trying to come to terms that this might be forever, I know it could be worse.   I am very grateful for this site, it helps to know we aren't alone.  I have had people think this is no big deal because it isn't cancer, no matter it is life altering and very scarey.    Take care.

Deb

[jamie]

I would keep hope that your balance issues won't be permanent. I found this on a radiosurgery site for John Hopkins:

The acute side effects are minimal and most patients can continue normal activity. In the months after treatment, radiation related side effects may occur to a minority of patients, most often headache, fullness of the ear, or decreased balance. These effects, if they occur, are usually modest and resolve over a period of months.
http://www.hopkinsmedicine.org/radiosurgery/disorders/acoustic.cfm

I hope you start feeling better very soon.