Back with an update - unfortunately

[crivers]

A quick recap of my situation:

April 2010 - CK at Stanford w/ Drs Chang and Soltys - very well done, they made it simple and easy
May 2010 - June 2010 - slight symptoms of buzzing and wonky head made work impossible, took time off to recoup - it worked well
late June - Dec 2010 - working as "normal" - at work, at home, at the gym, at the beach...just normal life - all was good

late Dec - present
my symptoms have cropped up again - a little different then before in the sense that they appear stronger than right after treatment. I do have the wonky head and it is impacting my thinking and my stamina during the day. And in addition I have been getting a bit lightheaded and dizzy I guess. The room is not spinning, but I find myself looking to sit down at times or hold onto something. I often feel as though I am just off in la la land - not really dreaming, but not really in the moment.

In speaking with the Dr. this appears consistent with the timing after the treatment, so I am not panicking or anything, but it sure isn't that much fun, especially since the last several months were basically symptom free. To try to knock the symptoms out, I am just completing a heavy dose of steroids (tomorrow is the last dose - yippee) per Dr. Chang's advise. Side effects from those can be pretty wicked it turns out, but I fought through it and now I am anxious to see if they have worked.

So mostly, this is an update - I know that I haven't been on in a while and so time is due.
But in addition, does anyone want to share some of their stories on these post treatment symptoms (I mean, where they went away, then cropped back up some 6 or 8 months down the track)? I'd like to hear about them going away (is that too much to ask, haha).

I am having much difficulty getting back to work - are there others out there that are finding this to be the case - even 9+ months after treatment?

Cayce

[sgerrard]

It doesn't sound unusual to me, Cayce. My whammy came about 3 months after treatment, but I have read about cases here where it was at 6 or 9 months. JB from a year or two ago had swelling from about month 9 to 12, and had quite a battle with it. It did eventually go back down, though, and the tumor shrunk as well.

Concentration was difficult for me for the first six months after treatment, but it definitely got much better at the end of the first year. Patience is the order of the day. Hopefully some others will come along to share their stories of woe and recovery. Hang in there!

Steve

[sunfish]

You and I had CK around the same timeframe.  Here's what's happened to me:

March 2010: CK mid-month.  Lots of problems getting high blood pressure afterwards to go down (steroid-induced?).  Tinnitus louder, a little wonky headed, but no real dizziness, and no increased hearing loss.  I got back to work full time on March 29.

May 2010: Back to running, riding bike, triathlon, etc.  Early May, I began to notice some changes in vision (subtly double vision, floaty, cloudy stuff)

June 2010: Consulted with neurologist, opthalmologist, about vision.  No  answers.  Audiologist reports hearing is unchanged.  3 month MRI shows no growth/swelling of AN

July 2010: I start to get a little disequilibrium, along with wonky headed feeling.  I tend to "misstep" a couple times a day

August 2010:  Disequilibrium continues, and ever so slowly, it worsens.  The last completely solid, clear headed days I had were in August.

September 2010:  Vestibular assessment shows I have lost 46% of vestibular processes on AN side.  A new neuro-otologist suggests I wait and see what happens, and assures me this will improve, but can last a couple years!

November 2010: My hearing seems to be changing rapidly.  Consult with ENT and audiologist shows increased hearing loss at high frequencies.  ENT prescribes a "burst" of prednisone.

December 2010:  Prednisone "burst" kicks off another spike in blood pressure, which has yet to settle down.  Hearing comes and goes.  Primary care doc quadruples blood pressure meds.  Neurosurgeon is trying pentoxifylline, a drug used to treat radiation side effects in cancer patients.

Sorry, I guess this isn't an inspiring story about getting better!  I can still work.  I was panic stricken this summer that I would lose my job.  But I seem to be doing OK.  I will make them fire me, rather than quitting!  I'm less nervous about that now.  I still stumble at least a couple times a day, even on good days.  My blood pressure is often too high for me to exercise (vicious cycle).  I NEVER had blood pressure problems before CK.  The meds give me significant problems with heartburn and nausea.  I've had several episodes of very difficult, painful swallowing recently.  My hearing is definitely worse, so the steroids only hurt my situation and didn't help.

Now for the positive:  The past couple weeks, I've been wondering if maybe the disequilibrium is subsiding microscopically.  I had my hearing aid adjusted to help with further loss. I think it's critical to focus on what we CAN do, and not what we CAN'T do.  Often, my fears of how I'm doing are not in line with what's really going on.  My 6 month MRI also didn't show any change, although I really don't think neurosurgeon reviewed MRI very well because computers were down that day.  I have 9 month MRI scheduled for late February.  Hang in there!  Most of the docs tell me it gets better over the next year or so.

[crivers]

Steve, thanks for the insight - as always. I too am sure that this is not abnormal and that it will eventually pass. In a way it helps to hear that I'm not just being too hard on myself for not feeling A-OK right now. Even though I'd rather be 100% at home and at work, the fact that I am not won't cause me to be filled with regret - I'll just keep pushing!!

Cayce

[crivers]

Sunfish,

thanks for the update - it has been a while since we exchanged stories.

Sorry to hear that your situation has taken those turns. I wish the best for you in continually getting more positive results. I am sure that we will both improve as time goes on and that is the most important part.

I am impressed and inspired by your constant push forward given your side effects.

I'll look forward to the update in February. My next scan is April and I'll try to do a better job of keeping updates posted.

Cayce

[ppearl214]

All

I ran into post-CK issues anywhere between 3mos-16 mos... was told it takes approx 2 years before things may calm down..... every now and then, the "wonky head" kicks up... or the enhanced tinnitus (esp. when I'm under stress), etc.... and this is almost 5 yrs later.

Hang in there... I live by my mantra of "day by day, inch by inch....".... these words may not be comforting to some, but I have found, for me, it's the only way I can try to get through what ails me (whether AN or other medical issues.... or life in general).

Hang tough!
Phyl

[b91221b]

Hi, Cayce...

I, too, can relate to the others who posted here re: delayed reactions to CK.  My CK treatment was 10/09....latest MRI showed reduced blood supply to the tumor, but no change in it's size.  Trigiminal nerve is being compromised which results in jaw pain a couple of times a day.  When I compare how I felt immediately following CK to how I feel now, there is an improvement. (Or I'm just getting used to all of this!!)  The tinnitus is still there...and the hearing is worse in the AN ear...not so much with "sound", but with word discrimination...making for a fun evening when the TV is on ...always asking "What did they say?"  (Hubby is very patient with me!)  Balance issues continue, fatigue is almost daily, but I have adjusted my lifestyle to "agree" with my body.  When I'm tired, I lie down.  When I feel good, I get lots of things done.   There are some things I can NOT do anymore...like standing one-legged on a chair to reach something, or turning around rapidly at a specific sound without being a little wonky-headed. These are small irritations, but not life-altering.  I've learned to laugh at myself more, and not to expect so much.  My "personal computer" in my head has a "virus", and so far they haven't come up with an "anti-virus" program...but it still works pretty good!  Keep on keeping on!!!  And smile!

[Suu]

All
 was told it takes approx 2 years before things may calm down..... every now and then, the "wonky head" kicks up... or the enhanced tinnitus (esp. when I'm under stress), etc.... and this is almost 5 yrs later.
Phyl

Crikey! I'm glad I came across this post so I don't stress on things as they happen.  I keep waiting for the magic to begin and the normal me to pop back out.

Reading about what can or might happen gives us insight that we wouldn't get from a 15 minute consultation with any doctor so I'm happy just to have found this place.
I'm guessing that this is going to be a new kind of normal for some time 

My mantra is "Better out than in".

Hugs to all,
Suu xxoo

[ppearl214]

suu,

my mantra (as many here have learned over time) is "day by day, inch by inch.....".... regardless if illness, job, family, etc........ but me likes your's as well

Yep, even 5 yrs later, I still run into the "weird" every now and then.  For me, post-radio (CK), I just keep telling myself that if the ultimate goal was achieved (in my case, the radio stopping the AN from future growth... which 5 yrs later I can report... the goal has been achieved), then I will try my best (ie: day by day, inch by inch) to deal with the "weird" that may crop up from time to time.....

wellness wishes right to ya!
xo
Phyl

All
 was told it takes approx 2 years before things may calm down..... every now and then, the "wonky head" kicks up... or the enhanced tinnitus (esp. when I'm under stress), etc.... and this is almost 5 yrs later.
Phyl

Crikey! I'm glad I came across this post so I don't stress on things as they happen.  I keep waiting for the magic to begin and the normal me to pop back out.

Reading about what can or might happen gives us insight that we wouldn't get from a 15 minute consultation with any doctor so I'm happy just to have found this place.
I'm guessing that this is going to be a new kind of normal for some time 

My mantra is "Better out than in".

Hugs to all,
Suu xxoo

[Vivian B.]

Hi there,

I have not been on for awhile myself. I had GK in June 2010 and have gone through the same stuff you are going through and about the same timing as well. What freaks me out is when I get the throb like feeling in that area. I wouldn't worry but I totally understand, it is quite annoying. Hope your symptoms subside.

Vivian

[leapyrtwins]

I didn't choose radiation - I chose surgery - but my neurotologist told me that sometimes side effects of radiation don't crop up for as long as 12-18 months after treatment.

Jan

[Tumbleweed]

My history in a nutshell:
The first two months after CK were horrible; I was profoundly fatigued and about 15 to 20% dizzier compared to before I was treated. On the positive side, my tinnitus decreased dramatically right after treatment.
At 4-1/2 months post-CK, I went through a week-long episode of hyperacusis, during which time I lost some hearing.
At 6 months post-CK, I began to dramatically improve. Over the next year and a half, my balance improved so much that it ended up becoming much better (about 75% improvement) than before I was treated.
I felt great until roughly 2-1/2 years after treatment, at which point I had my first vertigo attack in about 9 or 10 years. The vertigo only lasted a couple hours, and I was back to feeling great in about a week.

According to Dr. Chang, there is no magical cut-off date after which all symptoms cease. Sad to say, but our cranial nerves have been damaged by a tumor. You can remove or irradiate the tumor to control its growth, but the damage is still there. Those damaged cranial nerves will always be our Achilles heel, the first to act up when our general health is not 100%. By maintaining an ultra-healthy lifestyle 24/7, you can greatly reduce the frequency and severity of these episodes. I give myself the occasional unhealthy treat, but try to maintain really healthful habits 95% of the time. It's not what you do occasionally but your regular habits that determine how you generally feel.

All that said, sometimes it seems as if my symptoms increase temporarily for no apparent reason, even when I'm taking really good care of myself. But I can only imagine how much worse or prolonged the episode might have been if I hadn't been watching my health so much.

Just my two cents...

Cayce, we're never completely out of the woods, but the general trend is improvement over time. It's important to remember that all setbacks are highly likely to be temporary.

Best wishes to all,
TW

[oksandra]

I can't speak to the recurrence of symptoms after feeling well for awhile because it hasn't been that long, but I've definitely been having a lot of symptoms starting about 3 months - 6 months post CK.  The symptoms included increased vertigo (especially in reaction to bright sunlight), a whooshing noise through my ears, headaches, and general exhaustion.  I'm currently on a corticosteroid, so I feel pretty good now, but the Dr. is weaning me off, so I don't know how I'll feel.

Even though this thread is a little discouraging, I am very grateful to know that symptoms may recur and that doesn't necessarily mean anything has gone terribly wrong.  I had been under the impression that things would slowly get better and better over the next two years and might have freaked out if I started having these symptoms again.

Sanda

[crivers]

Thanks to you all for sharing your stories - I choose to take the stories positively.

My new update:
Shortly after the last post, I returned to work once I got off the steroids. My symptoms did not go away and in fact got progressively worse over the course of the next couple of months. I suppose it doesn't help that I travel frequently for my job (much of it overseas). I seem to have OK days and bad days. It has made it increasing difficult to maintain focus and diligence at work.

I recently put in for leave - and I hope that over the next few months, I can focus on my health and start to tilt the ratio of good days to bad days.
Wish me luck!

A small request for the group. I like to talk with someone that has had the procedure more than 2 or 3 years ago and ask some questions. If anyone is willing to talk via email or phone, would you please let me know. I'd really appreciate it.

I'm keeping my head up and looking for signs everyday,
Cayce

[C Bourne]

Cayce:

As you may have seen in my Post-treatment thread http://www.anausa.org/smf/index.php?topic=14767.0, I had my AN 'symptoms' increase to a higher level than ever before at about the 7-month mark.  I completely agree with you that it sucks, because you have several good months, and you think you're over everything, and it all comes back.  But I knew it would probably happen, and it wasn't unexpected, just 'unwanted'!    Luckily this was about a week before my regularly scheduled followup MRI and doc appt, so good timing!  According to the doc, there was no growth on the AN, and nothing looked out of the ordinary, so he assumed it was probably 'thickening' or growing internally (which is a possibility and not unexpected), and that was causing the reappearance of the symptoms.

My original treatment was 5 weeks of FSR ending about the end of June 2010.  My symptoms came back in mid-Jan 2011.  I have had the symptoms since then (they haven't gone away) - so going on 2.5 months.  The docs put me on two 5-week rounds of steroids to try to control the symptoms, but from what I can tell it didn't do anything (except make my life a living hell for the last 2.5 months due to the steroid side effects).  I still have 'increased' symptoms over what I had immediately before January - tinnitus, hearing loss, dizziness (some episodes of vertigo) - and I now have numbness in my tongue, lips, and cheek (which I didn't have before Jan).  The numbness developed shortly after I started the first round of steroids, but I didn't even realize I had it until I was off them, and still had it (just assumed it was related to the steroids/swelling).  That was the reason for the second round of steroids, but it didn't help at all.  After 2 weeks of a high dose and no improvement on the numbness, the doc said that because there was no growth on the MRI, there wasn't much else to do except just let things work themselves out, and he thought that the symptoms were related to the AN swelling post-treatment and that it is expected to subside (at some point) and I just have to wait it out.  So they tapered me off the steroids, and that's where I am now.

So now I am waiting for the steroid effects to go away, and see 'what's left'.  I still have dizziness and it's impacting my daily life, so I will pursue vestibular rehabilitation in the hopes that it will resolve that issue. Nothing much to be done about the numbness - live with it, and hope it perhaps goes away. Same with the tinnitus (but it won't go away!).  My hearing loss is at the point where I have problems if there's more than one person talking, or any noisy area, and if I lay on my good ear in bed or on the couch, I don't hear much (nice to 'turn off' my spouse's snoring!).  I've adapted, and doubt I would pursue any hearing aid/solution at this point.

As far as work goes, I took full short-term medical leave for the first 3 weeks that this started, but then I started to feel able to work part time and felt bad that I had left everything hanging, so I came back on a return-to-work program (basically on disability, and work from home when I feel able - I do computer work).  Some days I have worked 6-7 hours, others not at all.  It is difficult because you can't plan ahead for when you won't be able to work, so sometimes I affect other people's work.  It bothers me.  Also, as I am now off the steroids, I thought things would return to normal, and I would be able to return full time this week and agreed to a 3-day training course which started today. Unfortunately I still feel awful, and a full day, especially trying to learn something new, is a bit much for me right now. Thankfully I was able to arrange with the instructor for 10 min breaks every hour, and I am taking the course with a co-worker, so he is helping me when the 'fuzzy brain' strikes...  I'm hoping the steroid effect resolve in the next few days - that would make things much better.  Then I only have to deal with the AN symptoms (which I'm used to dealing with!).

Good to hear that you are able to take leave for a few months and concentrate on getting better. I'm interested in following your story, as it sounds like we have some similarities.  Please keep us updated!

-Cyndi-