Proton Treatment Journal

[skipg]

My 1 month follow up is Dec 21st. The only thing I have noticed is fatigue. I started to force myself to take a nap in the afternoon and that seems to help. My tinnitus is the worst part of this AN. I had it bad before treatments and it is still almost unbearable. Keeps me up at night and disrupts my normal activities. I am hoping that when the tumor starts to shrink it will lessen the pressure on the nerve and hopefully the screaming will decrease. My night time stability has improved greatly. I left this am in the dark on the Harlley, not remembering that I had curtailed riding in the dark. I had not wanted to take a chance riding at night with one part of my balance system being compromised by the AN. As it was everything was almost back to normal since the treatments were completed. I also noticed I have been experiencing a very slight improvement in hearing. Very minimal but hopefully the start of better hearing.
Skip

[janetsue]

thank you for the update. please keep us informed how you're doing.

[skipg]

Here it is Jan 23rd and I realized that I forgot to post after my Dec 21st follow up appointment. The appt was one month after the final proton treatment. There was nothing new to report and the Dr said he was not expecting any negative developments. No improvement in hearing and no "fullness in the head" feeling. The tinnitus is as bad as ever. I was hoping that when the tumor realized it was dying, it would give up and reduce the pressure on the nerve and maybe lessen the screaming in my head. Starting to get very cold for riding so that type of therapy is diminishing. I was able to go for a New Years Day ride and rides on Jan 2nd, 3rd, and 4th. These always seem to help. Noisy echo y places still bother me due to the SSD. Next appt is for the end of March, after I have my 4 mos post treatment MRI. Overall I am better now that I was  back in July when the symptoms became much worse. Wonky and full head, unsteady, nighttime stumbles, and overall goofy feeling, all of which are gone. Better days are still ahead!

[millie]

It's great to read your symptoms are lessened.  Hope you continue to recover strongly.

[neetze1]

skipg,
Glad that you seem to be doing well.  I was recently diagnosed an am exploring all options.  My AN is bigger than yours was (2.4 x 3.4cm)  I have an appt set up on Monday with Jefferson in PA to discuss FSR.  I also have sent my MRI to Penn Medical to see if Proton would work for me.  Were you able to find out any followup statistics as far as recurrence?  How about facial nerve function and hearing? Thank you very much for sharing your information.

[skipg]

Just got back from 4 mos post proton checkup which was 1 week after the scheduled MRI. Tumor showed no growth and initial indications are of necrosis in the center and starting to show water like composition, whatever that means. But regardless, this is good news and what they were expecting. Hearing still gone in AN ear, same as it was before proton treatment. Now onto Cross hearing aids.

[MDemisay]

Dear skipg,

Great news! You sound happy? Cross hearing aids? Are they new?

Mike

[skipg]

Just got he Cross last week and boy are they hi-tech. Over my head to try to understand how they work in the auto mode, and yes they work great.

[BeckyMax]

Hi Skip!  wondering how you are doing.    Our ANs are very similar, just got my latest MRI and after the intial 6 months without growth I've had a spurt from 5x7 mm to 8x11 mm.  Resuming my research on Proton Beam Therapy.  Can you give me an update?

Becky

[skipg]

Hi Becky, sorry to hear about your growth.  Well I am now 10 mos post proton and have another MRI scheduled for Sept. My June checkup was uneventful (no MRI) just a Dr Appt for any physical signs. Nothing new. I still have hearing loss in AN ear along with the tinnitus. The tinnitus is better than it was at its worst but still annoying. Balance is he same as it was. Only time I notice difficulty is when I walk slowly or come to a stop on the bike. No falling, just a feeling that I know I am not at 100%. Put about 5000 mis on the bike this summer with no problems. Both 1 and 2up. I never had any other nerves affected. Are you still a candidate for GK. If you read some of my other posts you would have seen my regret on not having GK as soon as the AN was found. The studies came out after mine had doubled in size and I started Proton treatments. Keep the faith and let this encounter build you up.
Skip

[BeckyMax]

Thanks Skip.  I do recall reading of your regret for not doing GK immediately, but can't remember the reason, I'm gonna review your prior posts.

I talked to my doc yesterday, he still thinks I should wait, but I'm having doubts about waiting too long.  We spoke on the phone very briefly and I wasn't going to get into all my questions on the phone.  i have an appointment to see him on 9/18.  My husband sees him as well for hearing loss related to a car accident, so we scheduled both of us at the same time, hence the reason I have to wait so long.   I'm okay with waiting another 3 weeks to talk to him, but unsure if I'm okay waiting another year for my next MRI.    My biggest concern right now is that my tinnutus is getting worse, also I've been experiencing some pain in my cheek - not so much pain as pressure.  This could also be explained by a blow to the face when I walked into the awning on our camper about the same time the pain started, but it's still something to consider.  Of course, hearing had diminished greatly in the last year.  We will talk hearing aids at this appointment as well.

Thanks for the update!
Becky

[skipg]

After the tumor doubled in size the tinnitus kept increasing until it became almost unbearable. It was to the point where it was literally disabling. I had difficulty sleeping and was walking the halls at night, unable to concentrate during the day, and overall feeling of constant mental misery. My caution to anyone is not to wait too long if growth is detected.  But then again it seems that these an's affect everyone differently. My hearing kept diminishing to the point where I now have a Cross hearing aid due to ssd. If you get a hearing aid now and your hearing keeps diminishing (which we all hope it will not) insurance may not cover e new hearing aid. I was shocked that our ins. co. paid for the Cross with only a $40 co-pay. I am good for 3 years before I qualify for another aid.
Skip

[KeepSmiling]

Thank you for sharing your experience. We really appreciated it.

[skipg]

Just had my 2nd post proton treatment MRI. Getting used to these as I kept falling asleep. Nothing like a good Harley dream to keep you dozing. Anyway go for Dr appt next Wed. The last MRI in Feb showed the middle of the tumor starting to change. Hopefully more change for the good. Hearing is still gone but the Cross helps. The tinnitus is bad and sometimes makes me feel like I am losing my mind. Hopefully this too shall pass. Balance is mostly good. Over 10,000 mis on the bike in the last year and nary a spill or close call. Looking forward to a good report.
Skip   

[KeepSmiling]

Thanks for talking to us about this. Our experience with Proton Therapy has been very good, so far. It has been 7 months since the last day of treatment for my husband and he is doing very well. We are very glad we took this path. He has had no side effects. We believe and hope that his first MRI will demonstrate good findings. Thanks again.