Recent Posts

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Headaches / Re: Skull and Headaches - help from Australia...
« Last post by Patti on March 18, 2018, 06:03:00 am »
Rita - I am so glad you found one!  How is it going?  Patti
This is one of the better presentations on the basics of proton therapy, prepared by a medical physicist.   In it, the presenter quotes three stages of truth: (a) First ridicule (b) then violent opposition (c) finally accepted as self evident.   His view is that proton therapy (especially pencil beam scanning proton therapy) is almost through the second stage.
Pre-Treatment Options / Re: Met with Radiology Oncologist for 1st time
« Last post by KeepSmiling on March 17, 2018, 11:12:44 am »
You may want to consider proton beam radiation. My husband had zero side effects from it and it has been 5 years since his treatment. Look at my profile for my husband and you will see how it was 1.5 cm and now is .5 cm. It was worth it for us to travel to Boston for 6 weeks and get fractionated proton therapy. Luckily he set up a virtual office at the cancer library there and he worked full time during the 28 sessions, only taking time out for the radiation treatment , which was about an hour or so each day.There are very few champions for Proton Therapy here at this forum because they have not side effects. I could give you contact info for several individuals who had Proton Therapy if you would be interested. Make sure you understand all the options . Try to get informed consent before you proceed.
Radiation / Radiosurgery / Re: Just Finished cyber knife.
« Last post by kends2020 on March 17, 2018, 10:01:13 am »
Thanks Stella

Almost two weeks post cyber-knife and no side effects so far.  I would say I am the same as before the cyber-knife, which I guess is the best outcome.  The goal was to stop AN symptoms from getting worse.

Radiation / Radiosurgery / Re: Eye twitching
« Last post by Greece Lover on March 17, 2018, 09:58:19 am »
My doctor said eye twitching can just be nerves.  You're hyper-sensitive and aware of everything and can cause small motor twitches.  He said it might not have anything to do with the tumor at all.  Still comes and goes for me sometimes.
Post-Treatment / Re: Internal Vibrations
« Last post by ewhitese on March 17, 2018, 07:01:16 am »
I had several episodes awaken from sleep feeling as though the house was shaking as I said previously.  In my search for the cause I considered maybe I was experiencing defibrillation.  I have some indigestion heartburn issues I am dealing with and I was concerned I was having heart issues not heart burn. So after cardiology exam and testing, the heart is healthy and no good explanations for tremors. I'm taking steps to deal with my acid reflux etc but I don't think the tremor thing has anything to do with it. I'm going for Gastroenterology testing next month, been doing the acid blocker thing for quite some time now and would like to get away from it, we'll see.

So what about the tremors?  Has anyone had adverse side effects resulting from a tremor or is it just a nuisance thing to remind you that there is an AN sitting in there.  For me doesn't seem to be any trouble at this point just one of those reminders that I'm a member of the club. After ruling out the heart connection I just ignored it. I even contemplated the idea that it had something to do with the gas well drilling that caused a minor earthquake here several years ago and not an internal thing in me.  I'm doing extremely well and most of the time don't even notice any adverse symptoms and am functioning well.

Now that I here there is a tremor thing out there I plan to pay more attention and start a diary note tracking what is up. I don't feel any effects just want to be self aware and ready to be proactive not reactive. Just when I was letting my guard down too.

Hi Jack...

I am into my 17th year since diagnosis and have had many digital dental x-rays throughout the duration during which my AN has actually shrunk from the original 2.5cm to the present 1.3cm. I am happy to report that my personal experience is that the x-rays have had no apparent adverse affects.


Balance Issues / Re: Balance Issues Post Radiation: severe, moderate, light or none?
« Last post by GP9 on March 17, 2018, 01:14:26 am »
My balance is not the same, and I had GK about 8 years ago. It is worse at night, which is when I work, but even so, it is not too severe.
Post-Treatment / Re: How to protect myself from my employer
« Last post by GP9 on March 17, 2018, 01:08:41 am »
You might want to consult an attorney, especially one who deals with labor law, and disability cases. FMLA might not be the best option, since it is unpaid leave, which you said is financially impossible. There are other options and programs. The Americans with Disabilities Act says that an employer must make reasonable accommodations for you. For example, I am a locomotive engineer. Especially early on the single sided deafness made it hard for me to tune out the locomotive noise, and concentrate on radio instructions. The company got me a David Clark headset, like airline pilots use.

There may be other programs, which could be beneficial. The cold shoulder from your boss should not be taken lightly. This is why I recommend learning about what rights you have. You might also contact the HR department, or even the employee assistance program. There is no good in loosing your job, especially if it can be prevented, by the company knowing what you are going through.
Radiation / Radiosurgery / Side effects soon after LINAC-based SRS
« Last post by anflorida on March 16, 2018, 09:22:02 pm »
I am now officially two days post-SRS. I am experiencing some post-treatment side effects I was not expecting and am hoping that someone can let me know whether I have cause to be concerned.   

First, a little background. After consulting with numerous doctors and getting varied opinions, I decided to treat my 2.6cm AN via radiosurgery with Dr. Foote at UF Health Shands in Gainesville, FL.  I really liked Dr. Foote during my consultation and felt confident due to his obvious expertise in this area, the stellar team he works with (including Dr. Bova, the physicist who co-invented this technology and who would be running the machine), his track record of treating ANs larger than mine, and the confidence he expressed in making his recommendation for SRS.

The radiosurgery occurred two days ago on 3/14/18. I had my head frame placed at 6:30am but had to wait several hours before it was my turn on the LINAC machine.  The procedure occurred around 1:30pm and lasted ~an hour and 20 minutes.  There were no issues during the procedure, but as soon as it ended and they took the headframe off, a headache began to set in.  It started subtle but by 4:00pm it was excruciating. I laid in bed the rest of the day/night unable to eat or move at all.  The on-call doctor assured me that this was due to wearing the headframe for so long and the depressurization in my head from the lidocaine wearing off. He told me to take a double dose of fiorinal and wait for the pain to subside.  I finally passed out around 10:00pm and had a restless night's sleep.

The headaches were much less severe the next morning. With my focus off the headaches, I started to notice a whole new set of side effects--the tinnitus I had occasionally experienced pre-treatment was now much more pronounced (almost roaring at times) and more frequent. My right-sided hearing (which already was pretty bad) seemed worse, and my balance was more off than normal.  I also felt fatigued and like I was in a "fog."  These symptoms remain ongoing.  Thankfully I have not noticed any facial weakness or numbness.

I plan on calling Dr. Foote on Monday to report my symptoms, but I was hoping the ANA community could shed some light on whether my results are abnormal. I thought things like hearing loss, tinnitus, balance issues, etc. would occur gradually over time instead of immediately after treatment. Also I have not heard of anyone else having such severe headaches/pain following the headframe removal.  Should I be worried?

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