Gamma Knife - Question

[S.arah]

Hello Everyone!

I was diagnosed with an AN 2cm x 2.7cm in August 09 - London, England. I am so glad I have found this forum and read all your encouraging stories which have shed a lot of light into this whole procedure. Have finally decided on Gamma Knife and will be scheduled January 25th! I absolutely can't wait to get it over with though I am slightly scared of the head frame being bolted onto my head for a few hours.... 

To my GK friends.... did you experience any long term side effects from GK? I know that there is the possibility of nausea, head aches etc. in the short term...
but how did you react months after your treatment? Each story is different.. please share yours!

Many many thanks!

[S.arah]

I meant January 29th.... I'm just too eager 

[GM]

S.ara,

I have had no long term effects from GK, I had my treatment in 2003.  Please note that it is common for the tumor to swell slightly after treatment (up to two years after treatment) so don't freak out if you go back after 6 mo. and it has grown slightly.  Mine started as 1.8 cm and swelled to 2.1 cm over two years.  It is currently hanging out at 2.1cm. 

You have truly made it past the hardest part....making your treatment decision....CONGRATS!!!

I wish you the best in your treatment...and wish you fast and positive results (tumor shrinkage).

Gary

[sgerrard]

Does Cyberknife count? If not, then welcome to the forum, anyway. If so, then I had extra funkiness at about 3 months, and it was all done at about 9 months.

Steve

[dlaczynski]

I was GKed on 9-11-2009 and acutally went back to work a few days later, long weekend. I haven't noticed anything different after treatment. Granted it has only been a few months, but I still have the same symptoms I had before being nuked. It really wasn't that bad of an experience, I can iimagine there are a lot worse things a person could go through. Good luck on the 29th.

[Sefra22]

Hi S.arah,

I had GK in 2007, and am very happy with my decision. About 4-5 months after treatment, I did experience some vertigo. It only lasted for a few weeks, and even then, the episodes only lasted a few minutes. I was told this is normal.

I did have some soreness in the back of my head for a few days after, (due to the head frame), but it was easily remedied with Tylenol, and alternating heat and cold packs.
I was back to work after 5 days, although, I could have gone back earlier, if I had wanted too....but I didn't want to 

Good Luck,
Lisa

[S.arah]

Thanks everybody! Glad to know that things are well for you guys.... 

sgerrard... what do you mean by extra funkiness?

[mk]

Hi Sarah,

congratulations on making your treatment decision.
I had GK 20 months ago for an AN that was larger than yours. As far as side effects go, I have nothing to report. I didn't feel anything out of the ordinary, either immediately after my treatment, or in the subsequent months. To such an extent that I asked my doctor if not feeling anything means that the procedure hasn't worked at all. She reassured me that this is not the case.
I had a few odd sensations from the frame placement (on the side opposite to the AN), which were taken care of easily by ibuprofen. The procedure itself was uncomfortable of course and very long, but overall not as bad as one would imagine.
The only problem that I have had is the episodes of sudden hearing loss, which however are probably not attributed to the GK itself (since I had experienced them prior to treatment as well), rather on the compression caused by the AN.

Best wishes for successful treatment and recovery.
Marianna

[S.arah]

Thanks Marianna! You guys are the best!

Another couple of questions... have you experienced any changes in your lifestyles? I heard fatigue could be a long term side effect cause of the internal adjustments the body has to make due to radiation and its effects? has anyone experienced changes in overall energy levels?

Have you changed your diets at all? I've researched holistic therapies quite a bit... has anyone tried alkaline diets etc? anything to boost the body generally... I asked my neurosurgeon and he said it wouldn't really make a difference but just wondering if diets might reduce any potential side effects...

[ppearl214]

Hi Sarah and welcome. Glad you are finding answers you need.....   we are a terrific bunch, aren't we?

re: diet..... chocolate... lots of it.   We've heard tidbits around the forums about some holistic approach diets but nothing with substantial backing to show they work.  So, for me... chocolate worked wonders during my radiation (Cyberknife) treatment.. and still does to this day!

Fatigue... lots of talk around here over the years.. and not just for radio patients (surgical patients as well).  Dr's note that rest, good diet (ok, forget my comment about choclate!  ) and exercise are truly the best ways to overcome fatigue. For me, I ran into post-radio fatigue between 3-9 mos.  It has definately curbed since (I'm now almost 4 yrs post radio) and when I think back... for me, the first year was probably the toughest. As we know, "individual results may vary...", thus, some folks have noted no issues with it... some have noted they have been floored by it... it's all in the individual.

Again, welcome.. and I'd STILL go for the chocolate!

Phyl

[sgerrard]

sgerrard... what do you mean by extra funkiness?

Sorry about the medical jargon.   I had treatment in September, and right around Christmas, got a cold that turned into a major tumor swelling episode. I felt miserable, stayed home in bed for Christmas, felt like my head would pop, had lots of pressure and aches and unhappiness. I was eating a lot of Ibuprofen, and most days thought seriously about calling a doctor and getting steroids. I never get steroids, though, and I was up and around and doing okay again by New Years. Thankfully that didn't happen again, just little one day feelings now and then for six months, and those have stopped now too.

Steve

[mk]

I will vote for chocolate too.
I was quite depressed during the period following my treatment, so chocolate definitely helped 

Seriously there have been quite a few threads on holistic approaches, diets and supplements, you might want to seek posts by Tumbleweed and Mickey.

Regarding fatigue, I can't say I experienced any, actually the opposite. I had been suffering from fatigue for 10 years, but it seems that my energy levels have picked up following GK. I did take it easy for a few months though, with many naps here and there and tried not to overstress. I found that stress is a major negative factor, and any symptoms/issues tend to become more bothersome when tired/stressed.


Marianna

[Tumbleweed]

Have you changed your diets at all? I've researched holistic therapies quite a bit... has anyone tried alkaline diets etc? anything to boost the body generally... I asked my neurosurgeon and he said it wouldn't really make a difference but just wondering if diets might reduce any potential side effects...

I had CK. I can speak only for myself, but can say unequivocably that a good, balanced, slightly alkaline diet -- high in vegetables and fruits but also including legumes, whole grains and fish and definitely excluding cane sugar -- helps reduce my symptoms tremendously. The difference, for me, is night-and-day. Good diet -- very low tinnitus, slight disequilibrium, high energy. On days I eat poorly (or don't get enough sleep the night before) -- moderately loud tinnitus, significantly poorer balance and less energy. Eating very oily foods (e.g., pigging out on peanut butter) and getting dehydrated also worsen my symptoms.

YMMV, but nothing but good can ever come from maintaining a healthy lifestyle. Diet, exercise, sleep and healthy emotional/spiritual life all do wonders, especially in combination.

Best wishes,
TW

[S.arah]

Thanks TW! definitely gonna take that course of action and lead a healthier lifestyle. I used to drinks lots of barely grass juice... it's effects on the body are detoxifying and alkalizing... I was reading an article recently, and came across the fact (not sure if it's really a fact)  that it reduced the effects of radiation! Not sure if this will impede on my GK treatment in the long run or not...not enough research on the matter....

T-3 daysssss!!!!!!!!!!

[Tumbleweed]

Barley grass juice is extremely high in vitamin A and chlorophyll. I've noticed that eating a lot of steamed, leafy, dark green vegies -- also high in vitamin A and chlorophyll -- makes my symptoms abate very significantly. In fact, leafy greens and salmon seem to be the two types of food that have a direct effect on my symptoms. I'm guessing the salmon is beneficial because 1. it's also high in vitamin A, 2. it's very high in B vitamins, which are nutrients for the central nervous system, and 3. the omega-3 fatty acids in salmon are anti-inflammatory, which might help keep inflammatory compounds generated by the tumor from irritating cranial nerves that control balance, hearing, etc. The exact mechanisms for why these foods help my symptoms is conjecture on my part; all I know is, the positive effects I feel are very real, very consistent and more than subtle over the long term (adhering to the diet). Hopefully, this will help you, too, S. arah.

Best wishes,
TW