Completed CK at Stanford - now a Toasty Posty Boasty

[nanramone]

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

[Tumbleweed]

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

[lalehjg]

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

[Tumbleweed]

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

[Anomar11]

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   

[lalehjg]

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

[sunfish]

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!

[lalehjg]

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

[sgerrard]

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

[sunfish]

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. 

[lalehjg]

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

[sunfish]

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.