when do post-cyberknife symptoms develop?

[neuroma_racer]

all done with my 5 dose CK regimen for my facial neuroma, so far so good.
nausea : better
fatigue : improving
wonkiness : better

the wonkiness, i liken it to a "bobble-head" doll, whose head is attached by a spring to its body
(not really vertigo, but not really the "stood-up-to-fast-lightheadedness, either)

so now, as i explain to family members and co-workers, what all happened, and the 6 month wait for interval scans . . .
everyone wants to know (self included) when the hearing will finish off tanking, (if its going to), and when the facial palsy will come (if its going to).

please include:
A) location of tumor
B) type and duration of treatment
C) onset of symptoms (relative to treatment), and duration
D) best yet, how long symptom fee since treatment

specifically looking at
1) facial weakness/palsy
2) trigeminal neuralgia
3) hearing loss/worsening
4) other??

thanks,
jesse

[PaulW]

From what I can gather post Cyberknife symptoms are the same as Acoustic Neuroma Symptoms.
Depending on where your tumour sits, its involvement with the balance, hearing nerve, facial and trigeminal nerve, and how your tumour swells and dies, will depend on the symptoms you get.
Most of the CK problems seem to be related to the balance/hearing nerve and changes that the treatment causes to that nerve.

If you have a facial neuroma you may escape many of the issues.

(A) Location of tumour
100% inside the IAC

(B) Single Session Cyberknife 13 Gy

(C) Onset of symptoms
2 hours after Cyberknife, I was dizzier, tinnitus got worse, hearing got worse.
Symptoms fluctuated.. At 5 months things seem to get much better, that was probably a tipping point where I started feeling better that pre treatment.

(D) Best Yet
Best Yet was a month ago.
My hearing was back within the normal range, my balance was good again, fatigue gone.
Felt completly normal again.

Since then, I have had a bout of hearing loss and steroid treatment.
Hearing is improving, its still better than it was pre treatment, but not as good as it was.
I have notice walking in the dark is more difficult at the moment, while two weeks ago, walking in the dark was not a problem.
I had these things happen earlier on and they all eventually resolved.
So heres hoping I get back to where I was 2 weeks ago. 

I had definite improvements at the 5 month and the 13 month stages.
From 18 months things started to feel great, with problems at 24 months.
Hearing fluctuated and got better, almost recovered 100% of my hearing loss.
Currently its better than pre treatment and continues to improve.


 

[mindyandy]

My CK was January 2008 and I had 3 sessions.
Onset: No symptoms felt normal
Delay onset: A couple months later had MRI showed swelling felt pressure under eye.

Fast forward 1 year post CK MRI showed slight shrinkage. Nothing new but still felt under eye/sinus pressure on that side of the face.

MRI 2010 showed same size nothing new. No new symptoms.
MRI 2011 showed slight growth(depending on who you talk to) HEI says no change and they looked over all my scans. I did start having trigeminal pain this is why I had an MRI done. Dr. at HEI says it has always been against my trigeminal nerve (this is why I lost part of my taste in 2007). Just now starting to have pain??? I don't know why it took 4 years to start having pain but I had surgery March of this year to debulk off my trigeminal nerve. Now so far so good. No more pain (knock on wood) but I do have facial twitching/continual movement but nobody can see unless I point it out. Sometimes its not as bad and sometimes I really feel it. I do still have some slight numbness which is way better than it was right after surgery.
My hearing is still great and I don't have much complaints.

If you have more questions let me know. Oh who did your CK? Did you ever talk to Dr. Medberry?

Mindy