ANA Discussion Forum

I am 3 month post op. Although I still have facial weakness, off balance and fatigue, all symptom is getting better and better day by day. As long as I feel better and better I am not worry about it.

I tried to balance my life and work. Once I feel tired I just take rest which bring back to good condition.

Currently I see Physical therapist each week and all test shows I am making progress in balance and others. I start to do exercise, take a long distance walk and read and house work. All is helpful.

PT told me fatigue and fuzziness were very common because your brain losing one side balance nerve is working hard on balance compensation. It takes time for brain to adopt. Exercise following PT is very helpful for me

Take care from now.



 

Now ive found out the radiologist has denied the request for Contrast  so i am getting another MRI without contrast and theres nothing i can do about it

my ENT requested contrast multiple times and the radiologist apparently declined it   NOW WHAT?


Why am i having so much trouble getting a doctor taking this seriously? Does anyone even know what to look for in cases like these? do doctors even know what acoustic neuroma is?

Why would they not give me contrast? whats the reason?
Ive been a month calling back and forth trying to get confirmed with contrast and then I find out the radiologist just declined it...

Why would they do this to me?

Hi Mmori,

Recovery is a unique process, what do your doctors say? Are you guys seeing a vestibular therapist? Take care of his nutrition as well.

Good luck.

I also go to gym regularly for work out, do you know if these workout supplements are bad for the AN?

The only supplement I take for lifting is creatine. I haven't noticed any effect of taking creatine on my symptoms.

For general health I take curcumin, krill oil, sulforaphane (via broccoli sprouts), vitamin D, and garlic extract. I haven't observed any effect of these supplements on symptoms or tumor size either.

Advil is always useful for the headaches.

How's your overall experience with the CK procedure?

Going through the procedure was easy and anticlimactic. Getting the MRI and CT scan before the radiosurgery was more uncomfortable than the treatment itself. I felt like I ought to stay as still as possible during the MRI to make sure the model would be accurate.

It does require a lot of trust in the team designing the treatment plan (the angles and intensities of the radiation beams). Going into it I assumed that the treatment plan would be generated by an algorithm, but it was actually custom-designed by a team of scientists. Unless you happen to be a Cyberknife expert, you won't be able to form your own opinion about the plan, and you can't easily back out at the last minute anyway.

I received the CK treatment in three doses over three consecutive days. The worst part for me was the unease and sadness of knowing that there was no going back to my brain being in a natural, unradiated state, which I had decided was preferable to the risks of surgery, but still not ideal. The surgeons I talked to who prefer open surgery had been adamant about avoiding radiation, but the literature seemed to suggest that there was no increased risk of secondary malignant tumors or other brain issues from the treatment.

The music they chose for the first session was also pretty slow/depressing, which didn't help. Having a robot shoot beams of radiation at me while I was lying on a table in a scary looking mask was very surreal and sci-fi.

As I mentioned, I had some headaches for the first week, but it wasn't that bad, and the results seem promising so far.

One year down and it's good news -- great to hear! I'm glad the symptoms you experienced were transient I'm nowhere near a power lifter, but I can say since I started back at the gym with weight training over the last few months, my wonky head symptoms have gotten better for sure. I believe physical activity is a plus for recovery.

Glad to hear that weight training has had a positive effect. I guess I can't say whether or not it has had any effect on my recovery since I got right back to lifting a week or so after the treatment.

I decided to be treated with CyberKnife at Stanford with Dr. Chang after a month of research and soul-searching.

Thanks for sharing your 1 year progress, Triplewave. Sounds like you're CK is very successful.

I'm on my first 6 months observation have not decided yet on active treatment.

I also go to gym regularly for work out, do you know if these workout supplements are bad for the AN?

How's your overall experience with the CK procedure?

cheers