ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: lalehjg on April 12, 2010, 08:06:35 am
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I completed my CK at Stanford on Friday with Drs. Chang and Soltys. Altogether a GREAT experience, and Drs. and CK team were very supportive and professional. Never for a moment doubted my decision. Took Ativan for the treatments, although I really could have done wihtout it I looked forward to the treatments as meditation, and was not nervous at all, even a little. That was surprising to me, given that I'm usually pretty high strung and tend to get quite anxious no matter what. I was in CK2 and the CK device's name there is "Levi," my new best friend. Took Decadron for the three days, and that made me jittery during the day and caused insomnia at night, but, small price to pay to treat a brain tumor!
Now, three days post completion, I am positively EXHAUSTED. I am dizzy, and I feel my ear on the AN side is full. I have some tinnitus, and feel like a truck went over me. Sleeping is weird, because when I'm about to wake up, I feel I am emerging from a slowly moving vortex, or I am swaying. I thought these issues would not emerge until later on, maybe two or three months post treatment. Has anyone else had these issues immediately after treatment? What did you do to deal with it?
Thanks, and glad I'm in Phase II now: recovery! :)
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Hi, I had CK at Stanford also, with the same team, in January 2009. I really think everyone's recovery right after is quite different. I wouldn't hesitate to email the nurse and ask questions.
I was perfectly fine and felt great for 3 weeks (except for some distortion and fullness). 3 weeks after CK I completely lost my hearing in my AN ear. I woke up one morning and it was completely gone. I called out to Stanford at 4:00 am their time, someone got woke up, and was so nice about it and started me on very strong steroid regiment. My hearing started slowly coming back that same day and within 3 days I felt much better. Everything went back to where it was except in the 6000-8000 hz range, where it went from almost perfect to moderate loss to this day. At least that is not in the conversational ranges.
so....I don't think your symptoms are unusual as a whole. I do have tinnitus now in my AN ear after CK...I didn't have it beforehand.
Balance is much better!
Tisha
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Sounds like you're going through much of the same experience as I had last month. Supposedly, my docs used the "Stanford Protocol." I had lots and lots of tinnitus for about a week, which gradually decreased back to near-normal for me. I also had lots of the wonky-headed, floaty disequilibrium thing. Hmmm . . . let me think . . . I had CK March 16-18, and my first, really completely "normal" day was March 29. Yup, "hit by a truck" would describe my experience. I tried to go back to work on March 23-24, but it didn't work for me. Have been back to work solidly since March 29.
If you've followed my recent posts, they still can't get my blood pressure back down. The flip side: The ENT and audiologist were astounded by my hearing improvement today!
I bet you will feel much, much better in a week or less. Get more rest than I did!
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Congratulations, Sunfish.
Being a toasty posty is definitely something to boast about!
Jan
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Nope, Jan. Lalehjg started the thread - she just finished treatment at Stanford.
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Nope, Jan. Lalehjg started the thread - she just finished treatment at Stanford.
Duh! See what happens what I try to post from work - where I'm supposed to be working ::)
Sorry, Sunfish - and thanks for pointing out my error.
Congrats to you, Laleh.
Jan
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I too just completed CK with Drs Chang and Soltys - last week in fact. The only difference is that 8 hours after my last treatment on Friday, I flew back to Perth AUS. So now I am here and feeling about like you describe, only with the added pleasure of the jetlag.
First - I agree that it was a very pleasant experience at Stanford. What a great team and it seemed almost too easy, didn't it?
I had tinnitus prior to treatment and I have it now - seems a bit worse, but I am hopeful that it will either return to previous levels (which at times was non existent, because my brain has developed a way to eliminate it when I'm not thinking about it).
I too have a full ear and I am convinced that my hearing is worse now than it was last week prior to the treatment. I am also confident that this is short term. Even though I have lost quite a bit in my right ear, it is still "useful", so I'll take it.
I am tired as well. While normally a 6 hour per night sleeper, I have been going 9 hours +since I got back. I tried to go back to work on Tuesday, but that didn't work out that great. I seem to be fine as long as I don't have to think to much or exert too much. I'll try to go in next week.
I'm glad to join the group of recent posties from Stanford. I wish us all the best.
Cheers,
Cayce
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Thank you all!
Sunfish and Cayce: it's good to be in touch with you to compare notes on how we're doing. It's good to know, for example (although I wish it were different) that this tiredness and need to sleep is not just "in my head" (no pun intended - :) ).
here's my update: I usually work pretty intensely, and have two small children 5 and 7 for whom I am solely responsible. That having been said, I am giving myself permission to sleep a little more, relax a little more and feel OK about it. I went straight back to full time work this past Monday right after treatment, and am trying to work out 30 min/day, and I can do that, but it's a challenge. Am taking next week off to chill-out and relax. I get dizzy/tired and "wonky" intermittently, and need to take it easy for a while before I can go back to work. My ear feels full, and it sometimes feels "sore" in there. sometimes, I feel like i'm falling into a hole in a vortex-like manner.
I would like to spell out what I'm doing to make this a good experience. I figure this may be of use to some:
exercising 30 min a day (I push myself) or more if I can
i've been making fresh fruit shakes for me and my kids morning and evening: berries (especially blueberries), mango, strawberries, peaches etc, with organic vanilla fat free yoghurt, organic reduced fact milk and ice, blended. I drink that for breakfast and as an after-dinner treat
no coffee and no alcohol (seriously - it's difficult, but I've made a decision)
decaf green tea all day
fresh fruit (an apple, orange, and a few tangerines every day)
green leafy vegetables
a multi and calcium (but nothing fancy there)
on a mental level, I have been trying to understand what negativity may have brought this AN about. Although this concept is subject to debate, I figure it doesn't help to take a positively critical look at the way I've been doing things.
To help me along, I am reading:
Pema Chodron's "When Things Fall Apart", a Buddhist perspective on how to deal with difficult situations that inspire fear/anger/guilt/resentment etc. I am also reading Wayne Dyer's "the Power of Intention" but finding the style rather annoying/gimmicky/commercial - that having been said, it talks about finding the YOU beyond your afflictions - and this comes in handy in our situation
To further help me along, I am seeing nurturing friends and family more, and making peace with fact that some un-nurturing people/family no longer have a need to have my attention (I know this sounds harsh, but it's a fact).
By the way, does anyone have any articles on how the radiation actually kills those pesky AN cells? I know it has something to do with ionizing DNA molecules and creating free radicals, but I would really like to know what's going on in there. If anyone knows, let me know!
Thanks, and will keep reporting.
Laleh
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Yum, smoothies! Now I will have to make one today. This morning, I went for a 2 mile run before work with my headlamp. I was a little nervous before about running in the morning, although my husband's at home, and would look for me if I didn't come back. Very safe neighborhood. It was great! I'm fairly sure-footed this week (with the exception of two 'staggering' incidents, one of which just happened at work). Increased tinnitus yesterday evening, that even my hearing aid wouldn't "drown out." But that's gone today. Blood pressure still a little high, even with the bp meds.
I will look at the books you mentioned. Wayne Dyer is kind of hoky, but he makes some good points. I'm pretty sure negativity doesn't help my AN grow. I'm pretty sure that positive thoughts/prayers help it croak. I can tell you one thing that's negative right now - that's how our little, sunburned ANs are feeling today! You mentioned the mechanism by which this occurs. I don't know for sure, but some of it's called 'apoptosis,' or cell death (I like that word, because I think it sounds like what the AN cells are doing: POP!!)
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Difficult weekend!
Tinnitus and dizziness. I can drive without a problem, but forget standing and having a conversation. I have to hold something or touch something still to orient myself. I am tired tired tired. I took a three hour nap today, and am still tired! When I sleep, it seriously feels like I plunge into a swirling coma, rather than just normal sleep. I feel like my head is full, and I keep having to pop my ears. I have a headache too. Helloooo recovery period. I know I will be fine though, eventually. Just need to strengthen my body, have good thoughts, and look forward.
Husband was away for three days and did not get back until today at noon Had to take care of kids 5 and 7 essentially by myself with some help from my mom, but frankly I do that when husband is here AND I take care of him, so nothing new there. Difficult but did it and kids are healthy and happy, but it takes much more out of me. I sometimes have to explain to them that mommy is feeling a little tired and can they speak more softly or not scream. I don't want them to remember me as this ailing person, so I need to keep keeping on.
My thought: as long as this tumor is dead/dying, all is good.
Love to you all.
Laleh
Will keep reporting.
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Laleh,
sorry to hear about the dizziness. Did you have that before treatment? I am lucky that I didn't have that issue. I am sending positive vibes to you for quick improvement. I am feeling better each and every day. Still headaches, but not as bad, still tired, but not as bad. Feeling good in general. I completely know the feeling about the not wanting the kids to think of us as frail and sickly. Gotta keep active, but not overdo it. Glad you have family around to support you. I couldn't do it without mine.
All the best and I look forward to future posts.
Cayce
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Alll.
Difficult day today. :( Yesterday and day before were better.
I was so dizzy and nauseous could not make it down the stairs unless I slid down on my bottom to go make kids' lunches this morning. Threw up about 30 min ago and feel slightly better. Yes Crivers had dizziness and vertigo issues before CK. That's how i found out about AN.
I got kids ready and sent them off to school and now I am resting.
Send prayers.
Have to go now cannot even stay seated and look at screen.
Love.
Laleh
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laleh
I am so sorry to hear that today is not a good one.... keep reminding yourself... for so many, such as myself that came before you and understand what you note...... keep an eye on the "prize". Remind yourself of the ultimate prize, in the hopes it helps you feel better.
I'm cheering you on! Hang in there!
Phyl
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I'm sorry to hear you've been struggling and not feeling well. Recovery from this CK thing is not exactly a walk in the park! My neurosurgeon this week says he thinks it can actually be harder to recover from CK than GK, which he also did for 10 years. Hopefully, this is just a temporary stage of recovery for you. What do the docs say about your vertigo/nausea?
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Sending all I have your way today...keep up the good fight, you'll make it through it.
Cayce
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Laleh - I hope you feel better tomorrow. It has to be very hard for you...keep coming back here to report. I have not had treatment yet, and still, have already been coming to this forum long enough to feel the loving support here. This is a good place. People do care about you.
Nancy
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Lalehjg:
Congrats on becoming a toastie postie!
Don't worry, your symptoms will lessen over time. You asked about other people's experiences with side effects, so here's my story:
Immediately after getting CK, my balance symptoms got about 15 to 20% worse. This lasted for about six months. Then, very quickly, my balance started to improve. It is actually much better now than it was before getting CK, in fact better than it has been in around 9 years, although I still have mild disequilibrium. About 25% of patients have balance improve after getting CK compared to pre-treatment function. You're more likely to have your balance symptoms worsen a bit after treatment, but then have it return to pre-treatment level of symptoms several months after treatment. I've been lucky. My tinnitus also dramatically improved immediately after getting CK, which is an even more unusual outcome.
Unfortunately, I had an episode where I had hyperacusis and lost about 10 dB of hearing on my AN side about 4-1/2 months after treatment. The hyperacusis went away in about a week or so (I think taking large doses of natural vitamin E helped), but the hearing loss didn't reverse. Later on, during months 6-12, I lost another 10 dB of hearing in my midrange frequencies on my AN side. But over the course of 18 months after treatment, my hearing in the bass frequencies actually improved about 15 dB.
One other thing: I suffered very severe exhaustion for a couple months after getting CK. This was unusual, as most people have only mild to somewhat pronounced fatigue for a couple weeks, and some people don't feel fatigued at all after treatment. Because I have had very dramatic tumor necrosis followed by shrinking, I believe my intense reaction (fatigue) was due to the tumor reacting very strongly and quickly to the treatment. That was a really good thing in the long run but was difficult to take in the short term.
Best wishes,
TW
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Thank you all! :)
This forum is so helpful to me. Thank you Phyl, Crivers, Sunfish, Nanramone and tumbleweed. Your prayers and well wishes have worked! I'm a believer in that.
I am feeling better today. I emailed Dr. Chang yesterday, and he thinks the issue has most likely to do with tumor inflammation, or, less likely, vestibular neuritis. He told me I could take steroids if necessary, and I will be calling them on Monday if not over weekend. Dr. Chang also said not to worry. This will pass. That makes me feel much better!
My nausea is gone for hte most part. Still tinnitusy and dizzy and tired, but as long as no nausea and I can move about, I am thankful. Need lots of sleep (not at all like me). I will let my body tell me what it needs, which is rest, relaxation and good nutrition.
Thank you again all. Will keep reporting.
Love to you all.
Laleh
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Laleh:
I found that taking rhodiola rosea, a natural herbal extract, cut my fatigue in half. It really worked wonders for me. After CK treatment, I was so fatigued that I could hardly sit up in a chair and was short of breath. 30 minutes after taking the rhodiola for the first time, I felt so much better, and the benefits continued in the following months when I took it.
You can buy it online or at a health food store. Not all brands are fresh/potent, though. Try to find an organic source. Take it no later than 2 PM or it might keep you awake at night, even though it doesn't make you feel speedy like caffeine.
Best wishes,
TW
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Lelah,
I know the vertigo is rough. It scares the heck out of me. I agree with the others: Keep your eye on the prize and it will get better. I will share my journey as yet another example of how individual results may vary. I will have my 18 month MRI in a few weeks. I had some fatique about 2 weeks after CK, then essentially nothing until 4 months out. At that time I had a bad bout of vertigo, that didn't relent after 3 days so I did a 12 day taper of decadron. My subsequent MRI at month 6 showed very little change. Since that time I've had varying degrees of wonky head, but generally speaking the good days are outnumbering the bad. I did have another round of vertigo about a week ago, but have managed it with valium 2 mg 2 to 3 times per day. When I'm in the midst of a spell I also might hit it with 50 mg antivert (meclizine) to calm it down right away. If asked, prior to diagnosis, I would have said I didn't have balance problems. However, looking back over the years I would have "spells" that I attritubed to hormones or sinus or hypoglycemia. I would get disoriented, dizzy, and often throw up, then be ok. Looking back, I now know it was the brain booger. The waiting game is a mental challenge as has been addressed many times on this forum, but 90-95% success is good odds. I continue to have random earaches and stabbing pains, varying tinnitus, and my hearing is definitely worse, but still useable for sure. I haven't had a hearing test for a year. I also developed facial spasms at month 6 that stopped at month 13, which Dr. Chang said was likely. When feeling good enough, challenging your balance doing whatever you like is very beneficial. The treatment is now behind you. Hold the faith, one day at a time. You're in my prayers. Mona
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Thank you TW and Mona!
TW: I should try the herbs. I'm always a little scared of trying herbal remedies, but at this juncture, I may try your suggestion. Mona, thanks for letting me know your symptoms. It helps to gain perspective by hearing other fellow AN'ers stories.
As things stand now, I caught a cold after my severe dizziness spells and nausea, so a little more stuffy in ear and more dizziness/vertigo. Last night, I woke up two times from vertigo. Each time, I instinctively pressed my head against headboard to get another positional input to my brain, and things steadied down before I went back to sleep. In general though, I am functional, although it can be challenging. I work on the computer a lot, shifting between screens and applications, and sometimes I honestly feel I am about to take a voyage of discovery into the computer as I perceive myself falling deep into the screen! :-\ Ah well!! Tumor be gone!
I am going to my internist to get a full check-up too. After hearing about Sunfish's blood pressure issues, I want to make sure my blood pressure is where it needs to be, as it's possible some of dizziness may be because of that.
The bottom line though for me is that if I am having symptoms, I know something must be happening in my head, and I know that something is that this tumor must be dying! It better be. Cannot wait to see my next MRI in five months or so.
Will keep reporting to you all.
Love.
Laleh
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Glad to hear you're hanging tough. Hopefully, your brain will get used to this new state and your disequilibrium will decrease.
Before CK, I never slept on my AN side. Right after CK, I tried sleeping on that side, to see if it would help to shove that side into the pillow somehow. It does help, and now I sleep on that side too!
Lots of tinnitus yesterday, the worst I've had. All day, no matter what I did. Hearing aid, no hearing aid, etc. This morning, I awoke to the same level of tinnitus, but in a couple minutes it subsided! Now it's there, but at a more manageable frequency somehow.
On the advice of my local support group, I contact the Stanford folks about the blood pressure issue, and they responded promptly to say that one might get something like this with a left AN, but not a right AN like mine. Maybe it was just "my time" to develop high blood pressure, and the stress of all this tumor and CK stuff just pushed it over the edge.
Laleh, it's almost certain that our tumors are on their way out!
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Friends.
Today and yesterday's report:
Yesterday was a swirly nauseous kind of day, although I am learning to push through these. Driving is fine (funny how that works - not sure why), but standing, sitting, sleeping, working, are all a vortexy type experience. Tinnitus channel is playing strong. Working is the hardest because I have to read and scroll stuff on computer, and that truly makes me "sea-sick."
How I am coping: no meds, not feeling sorry for self. Thinking to myself: tumor is on its way out. tumor be gone and disintegrate. In a year or less, hopefully, i will be back on my five inch heels. Right now, I am pushing through, telling myself, compared to cancer, a swirly vortexy feeling is a piece of cake.
Listening to Chopin to make self feel better. Let me share:
http://www.youtube.com/watch?v=Smqj_z04i4A&feature=related
love to you all. will keep reporting.
Laleh
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Ew, swirly vortexy does not sound like fun to me. If it were me, I would be taking Ibuprofen, it might take the edge off a little. Stay with it, Laleh, it is sure to improve with time. You are still in the first few weeks after.
Steve
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Sorry you're still having the vertigo-ish kinds of problems. I'm a few weeks ahead of you, in terms of post-CK. Every now and then I have a kind of sinking/falling feeling. Yesterday evening I was tired, tired, tired (I think it's the new blood pressure meds). Don't know about you, but there's been a little more recovery from this CK thing than I had bargained for. Laleh, it sounds like you're plenty active (work and kids, right?), because my ENT said one recovers faster from vertigo type problems if you keep active.
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thank you Steve and sunfish.
My report of today: I feel really good. In fact, so much so that, when I took my daughters for their swimming lesson this morning, I was sitting there not swirling in my head, and I felt like, I should do something, take advantage of this un-swirliness, I should go ... run for President or something :). In any event, things got a little uncomfortable when I was on my Blackberry texting and going on the Net (scrolling does it to me every time), but at least today I am not "at the mercy," which is great!!
took your advice Steve and am taking Ibuprofen on a full stomach every 5-6 hours. It helps.
Sunfish, your advice to be active helped too. I am usually very tired. Last night, I was laying there pretty useless after a long day working and in a post-radiation kind of fog, and I thought I really missed playing tag with my kids in hte evenings. So I mustered every bit of energy I had, and started playing tag with them. I pushedf myself. Was not easy but was worth it, and they had a blast, and so did I. thank you! :)
Will keep reporting! Your prayers are working.
Love.
Laleh
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Tag is great! Running, moving and looking in random directions. If you have the energy for it, that kind of activity really pushes your brain/vestibular system to adjust to your body's changing position in space. A couple times before CK, when I was having vertigo problems, sitting in front of the computer for too long brought back my symptoms. ENT said to be sure to move head, look left/right/up/down every so often or get up and move when at the computer for long periods. Keep up the good recovery work, I'm praying for you.