Post Gamma Knife surgery - What should I do now?

[Tbanis2463]

I just had Gamma knife surgery yesterday and recovering pretty good for only being one day.  I know that everyone reacts differently to treatment, but what should I do now besides wait?  Should I look into possibly getting a hearing aid with the residual amount I have in my left ear(the bad ear) or should I wait that part out? 
My tinnitus used to be constant, but I notice that it slightly fluctuates to pulsating a little then goes back to the constant tea kettle sound I am experiencing.  Can change in tinnitus sounds tell you something? 
I feel like I'm waiting for another milestone and I don't even know if it exists.

[PaulW]

I had single session Cyberknife which is essentially the same as Gamma Knife.
Things definitely happenned the first 3 weeks for me in particular, tinnitus, hearing and balance problems all got worse, in cycles.
I never had all three symptoms at once but always had one or two!

My personal experience would be to not get a hearing aid as my hearing fluctuated a lot in the first 5 months..But your experience maybe different. Today my hearing is pretty good and an improvement from pre treatment.
A week after treatment my hearing was pretty useless.

As for sitting around waiting for another milestone, I found getting up and getting mobile to be beneficial.


 

[Tbanis2463]

PaulW thanks for sharing that.  Do you have hearing still and do you have to continually take the drug?

[PaulW]

My hearing actually improved a lot after Cyberknife. I did not take any steroids straight after the radiation.
I had a period of sudden hearing loss in late february 2012 and again in late July 2012
Both times I took Prednisilone for 10 days and my hearing returned fully the first time, its still improving from the second bout of hearing loss.. Not quite back to normal hearing but pretty close... hopefully it will continue to improve.

Other than 2 courses of prednisolone for 10 days I have not taken any other prescription drugs.
The first course of steroids didn't bother me much, but the second course knocked me about a bit.
Was tired and emotionally flat for about a week after bouncing off the walls for 10 days.

I did take Ginger Extract for nausea/wonky head which helped... I am also taking Curcumin to hopefully shrink the tumor... Interestingly both hearing loss events happenned when I wasn't taking Curcumin.. Does it work? who knows, but for now I will continue to take it just in case..

[Tumbleweed]

According to Dr. Chang, you should not consider getting a hearing aid until your hearing has stabilized. That means no change in your audiogram results year over year (12 months apart). If you get a hearing aid now, you could be chasing a moving target (hearing response changing often), making it difficult to adjust the aid's response properly.

As for what to do now, be as healthy as you possibly can be. Eat a balanced diet. Avoid sugar, caffeine and alcohol. Get plenty of sleep and aerobic exercise. The healthier you are, the faster you will recover and the better the chance the treatment will be successful. Perhaps your tumor may also shrink, although this is relatively uncommon, so you should not expect it.

Taking natural anti-inflammatory supplements (such as the curcumin PaulW suggested) will help lessen any side effects due to the tumor swelling from the radiation treatments. This is not just wacky hippie theory. When I asked Dr. Chang's assistants if there was any problem with my taking natural anti-inflammatories, they told me it was actually a good idea. The most effective anti-inflammatory I found was bromelain (an enzyme contained in pineapple and which some clinical studies have shown shrinks some tumors). I found it helped keep my symptoms manageable. Along with other things I did, I believe it was partly responsible for my tumor shrinking (although I have no way of knowing this for sure). Bromelain must be taken on an empty stomach to be effective.

A few things to consider, in brief:
1. Sleep increases blood flow to the brain, which is necessary for healing and to carry away inflammation.
2. Cane sugar goes straight to any tumors in the body, feeding them. This is why radioactive isotopes are put on sugar cubes for a patient to eat, when doctors seek to find the location of a suspected tumor.
3. Walking helps to retrain the brain's sense of balance, compensating for loss from a damaged vestibular system. The more you walk, especially on uneven ground, the faster your balance will improve (assuming it's not already perfect).

Best wishes,
TW

[Tbanis2463]

Thanks for the info Tumbleweed