ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: S.arah on January 20, 2010, 05:11:11 pm
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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!
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I meant January 29th.... I'm just too eager :D
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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
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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
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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.
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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 :P
Good Luck,
Lisa
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Thanks everybody! Glad to know that things are well for you guys.... ;D
sgerrard... what do you mean by extra funkiness?
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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
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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...
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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! :D
Phyl
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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
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I will vote for chocolate too.
I was quite depressed during the period following my treatment, so chocolate definitely helped :D
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
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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
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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!!!!!!!!!!
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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
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Hi All
Dont know if I have posted that much here but the help I have received from reading others stories has been tremendous. I have a 2mmX8mm AN treated by GK in sept 2009. I have not gone for any post treatment MRI's as I was told to wait 2 years...As for side effects, its been 10 months and the first thing I noticed was 3-4 months after GK. There were these electric zaps in my brain that were brief but uncomfortable about 4 total. After that I got headaches and took some aspirin. The side effects have been MILD! But still there. I usually loaf around the couch but recently started weight and eliptical training (can't use the treadmill as I still feel as though I'm moving when I'm done). I have SO much more energy every day to accomplish what I need to! The nausea though, came on about 2 months ago and its actually caused me to puke once. Its worse when I'm tired and if I drink caffeine everything is worse, tinnitus, all of it. I wake up early around 5-7am because of the nausea and drink water to settle my stomach but have to get out of bed. I also have a video my husband took (sneakily) of my GK process if anyone wants to see it let me know! For me I use medical cannabis to help with the symptoms because that is better to me than steriods or opiate drugs like valium. I just look forward to the day that I feel good in that ear but the exercise has helped make it more tolerable in this body!
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Hi Sarah
I hope you are well.
Were about in England are you having the GK?
I was diagnosed September 2009 and had surgery to debulked the AN in December 2009 as my was huge. I am due to have GK at the end of the year, but because I have facial paralyses they have decided to wait to see if the nerve recovers anymore.
I am due to have mine in Sheffield with Mr Kemeny.
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Hi Steph28,
I had surgery for a large AN in March 09, I also like you had the remainder zapped with GK, 7 months later. I had my GK done by Mr Kemeny in Sheffield too. Hope you found him as lovely as I did.
Im from Wales, I was also young at the time I was diagnosed, 26. Just wondering where abouts you are from?
Louise. x
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Sorry I am nearly 6 months out of date. My AN was dianosed in 2005, wait and watch untill 2008 when AN was 1.8cms. Gamma Knife surgery carried out June 2008, two nights in Sheffield UK Hallamshire Hospital UK, staff were great, proceedure lasted most of the day(MRI and Gamma Knife equipment in different Hospitals). Yes the head frame was a little uncomfortable, but no real pain. I drove home the following day 250 miles back to the south coast with no problem No change in my hearing, ie I still have some hearing in my poor ear.
Now 3 years later haven't found a hearing aid that helps me, tried a commercial digital aid, plus many adjustments, got my money back. NHS now provided me with a similar aid with similar result, next they provided a CROS aid which was better but after 4 months I came to the conclusion that it was not that better than without any hearing aid. Background noise and hearing speech differentiation being the main problems. Currently looking at possiblity of trying a Transear a USA product that aims at single sided deafness.
I have had a MRI every year since, showing some reduction in density and size, hopefully if things are still OK next year, the following MRI will be 2 years later
The only other small problem is that I believe my balance is not as good as it was in 2005, is this due to my age (77), or the AN and gamma knife surgery.
No real long term effects, back to playing tennis and regarding myself as being very lucky to have had the AN diagnosed relatively early, and to have had it treated with Gamma knife. Thank God for modern technology, MRI and Gamma Knife, and the skill of consultants in developing teatments, and carrying out the new procedures
Ceepee
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Hi Louise
I live in Buckinghamshire, I had surgery in Oxford with Mr Kerr and Mr Milford. I know I still have issues with my facial nerve and a sizeable AN, but they were both great. I cant fault them at all.
Mr Kemeny was very nice when we saw him. My private healthcare ran out at the end of June and he did wont to complete GK before it ran out, But due to my facial nerve Mr Kerr wontted to wait for 6 months, which is no problem for me. All I would get privately is better food. Its all the same treatment which is what counts.
Is your facial nerve effected? I always knew because of the size of my AN my facial nerve would be effected.
Steph
X
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Hi Steph,
My facial nerve seems fine, my face looks the same as it did before I had surgery, which I am extremely grateful for. Although I do have some tingling in my cheek most of the time. I think it was the goal to preserve my facial nerve and have the remainder GK'd.
I think its a good idea that your surgeon wants to wait for a bit before you have GK. Have you any improvement in your face since your surgery till now?
Louise. x
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Hi There,
Just had gammaknife myself in Canada on June 30/2010. So far , I have been O.K. The rining in my ear is slightly back, headaches in the morning, a little nauseated by the afternoon, but overall, can't complain. I am not sure myself what is next in terms of side effects, but the oncologist told me to expect some facial numbness since the facial nerve is right underneath the tumor. But that is just for me, may not be with everybody. The whole experience was overall good and very interesting.
Vivian
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Hi Louise
There has been some improvement in my face, but not a huge amount. (I would of hoped for more by now). If I'm not talking my face looks near enough normal, which at one point it didn't.
My surgeon has said the bottom of my mouth is a lot stronger then the top. My bad eye reacts with my good eye even though it doesn't fully blink it does move. Plus the eye has started to water on its own and I'm using less of the eye drops. Plus it now closes on its own when I'm a sleep, which it didn't use to do. My wonderful boyfriend has taken photo's of me sleeping!! He actually nearly given me a heart attach as the flash has woken me up before.
The idea was to was to keep the nerve and have GK on the rest, but I think due to the size of the AN the nerve was under pressure. anyway.
Steph
x
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Hi Steph,
It sounds as if slowly but surely your face is improving. I know I cant fully understand how you feel as had didnt have facial palsy, but I was SO expecting to come out of surgery with some palsy as my AN was quite large. Also being young like you my face is quite important to me, although im sure it is at anyone's age. But it sounds like you have such a good attitude towards all this.
Im sure you'll see further improvement as time goes on,
Take care,
Louise. X
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Hi All!!
Sorry havent been around for a while... been 6 months already! gonna have my 1st MRI in a couple of weeks... Got my treatment done in London at St. Barts.... everyone was really wonderful. Great team!
Things have been good generally... my tinnitus though is quite loud now... though i can still live with it... i got these neck and head tensions that last about 5 mins at a time.. anyone experienced these? i dont feel like i can hear myself and just feel a lot of pressure all over...they tend to happen more often when i'm tired...
hearing has decreased but can still hear.. hope everyone's doing well!! stay strong and happy :)
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When my then 23-year-old med. student son was diagnosed with a glioblastoma multiforme (12/09), he did a LOT of research and now takes massive doses of Celebrex and Accutane (with oncologist's blessing) for their anti-angiogenetic properties, along with his regular chemo. He also read Ben Williams' book (a long term GBM survivor) who advocated lots of stuff. Among them his diet recommendations (my son said) made good scientific sense so now he eats pounds of blueberries and broccoli and drinks green tea he imports directly from a researcher friend in Japan. And so do I. The link below gives the information. Anyway, diet is one thing we CAN control so why not eat healthy?
http://www.alternativecancer.me/therapy/anti-angiogenesis-foods-agents-fight-cancer-natural/
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I will vote for chocolate too.
I was quite depressed during the period following my treatment, so chocolate definitely helped :D
I can't even tell you how many bags of chocolate I ate, it was my saving grace...had surgery in nov of 08 so I basically sat around all winter eating bon bons ; )
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I will vote for chocolate too.
I was quite depressed during the period following my treatment, so chocolate definitely helped :D
I can't even tell you how many bags of chocolate I ate, it was my saving grace...had surgery in nov of 08 so I basically sat around all winter eating bon bons ; )
Deca-crap (Decadron) had me in a chocolate feeding frenzy post-CK.... oy... the weight I gained.
To the original topic, there is no proof that diet or suppliments affect our outcomes, but yes, they sure do help us to feel better. Proper nutrition, rest and exercise are key to any "recovery" and as for radio (GK or any other type), by doing the 3 items I just noted certainly helped me counteract any fatigue that may have set in (immediately post-radio, the fatigue was truly a bear to deal with).
IMO, you do what helps you to feel better. Chocolate was my craving, but by watching my diet, resting and exercise certainly helped me post-radio.
Just my 2 cents....
Phyl
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I have pretty much decided myself that I will have the GK. I was so glad to see this post that was geared all to gamma knife. One of the questions I have is that there were several comments about being uncomfortable with the metal frame. My neurosurgeon stated that he would give me Verset (sp) which is a conscious sedation. Did any of you have that and still feel uncomfortable? I forgot to even ask today when I met, how long does all of this take? Can you give me an approximate time frame in hours? Thank you all so much for your forthcoming answers.
KathleenMary
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KathleenMary - for me, the entire time from installation of headframe until removal was about 5 hours. I was the first patient of five ( a busy day I was told) to be treated. I came in at 5:45 am, and treatment began immediately. I remember little of the entire event, because I was drugged. I remember people looming over me and asking me if I felt ok, but I was in lala land and felt nothing.
two days later I had an unusual (according to statistics) acute reaction and had to take steroids for one week. During that event, I lost all hearing in AN ear (which has since returned).
Im ok now
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Nanramone - what was your reaction? Did the sites where the pins entered sore for any significant length of time?
KathleenMary
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KathleenMary - the pin sites in the back were aching and tender for about one week, and then the scabs loosened and fell off at about 10 days. New scabs formed and fell off several days later. One pin site in front swelled slightly and had a small bump, and a new scab formed repeatedly. I put an antibiotic salve and a bandaid on this thing for several days, and wound healed right away.
The back pin sites caused most of the discomfort, but it was not a big deal, and I've forgotten about it. I've had far worse pain from stubbing my toe, if that helps you understand it. :)
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I concurr....the pin sites healed up pretty fast and did not have any complication from the pins during my GK treatment.
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Did youhave headaches after the GK proedure and i so, how long did they last. KathlneeMary
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No headaches...no problems... Had the treatment on a Friday, went back to work the following Monday...only my boss knew about the proceedure.
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KathleenMary - I did have a very unusual acute reaction to GK. I stayed in bed all afternoon the day of GK. That evening, I swam with my family in the hotel pool. The following day I felt good, and my daughter and I went shopping. I started to feel some waves of dizziness, but we went out for dinner. That evening, I developed an extremely bad headache, lost all hearing in the AN ear, and literally fell over while walking through the room. I called the hospital and was put on steroids. I flew home the next week, and was too unstable to walk so I was in a wheelchair, which was weird. After taking steroids for one week, all problems resolved.
I recounted this because you asked, but again, I'll say that this was a very rare event. Most people do not have this type of reaction, and I have no idea why I did. My balance problems increased post radiation, but after months of vestibular rehab, I'm greatly improved. I'm hoping there will be no more problems like that. It was scary.
Nancy
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Again, I did CK, not GK.
But I think it's important to expect some minor or not so minor "issues" with the process, and be prepared for them. I've posted a couple times that I wished I had someone actually stay with me in the afternoons after my treatment. Mostly, I spent that time in bed. But the combination of steroids and ativan weren't too good for me, I really didn't feel well, and in retrospect I was really too "out of it" to have been safe without a support person.
Also, I tried to go back to work too soon. The doctors and patients who've had radiosurgery sometimes make this sound like a walk in the park, and while it might be for some folks, others encounter a bit more of a rocky road. So just be prepared for anything!