Two years post-CK: Largely Successful, some disappointments

[sunfish]

I'm making my two year update a couple weeks early.   If you're wondering what my AN journey was like, you can look at my old posts.  Sometimes I go back and look at where I used to be two months, a year, two years ago, and I'm surprised. Two steps forward, one step backward

Bottom line: Tumor shows "widespread necrosis," and the neurosurgeon says I'll never have to worry about it again.  Same size as pre-treatment.

From about three months post-CK, I had significant balance issues, and what we call "wonky head."  Kind of like a low-level half-dizzy, feeling. I found myself stumbling mildly to one side up to a half dozen times a day.  This feeling eased up some about nine months post-treatment, although I still stumble a little and I'm more careful on the steps, in the shower, etc.

I had one day when I noticed decreased hearing, about 7 months after CK, did a round of steroids, and now have hearing just as good as pre-treatment.  Great hearing preservation, although considerable damage had been done pre-treatment.  This would be a good reason not to wait, if you're thinking about radiosurgery.

Some kinda murky vision, which I'm sure has to do with vestibular problems, low level nystagmus, stabilization issues.  Nothing too serious, though.  Eye specialists weren't too helpful.

Disappointments: I've never really snapped back to my previous level of health, although I do some running, cycling, triathlon.  I just have a little more fatigue in my life, and I feel like this AN aged me a little extra. I can't work as hard as previously.  I think my brain is always fighting the balance/dizziness issues, and it wears me out.  I also developed blood pressure problems the week of CK, which never resolved.

I would do CK again without a second thought, and I would do it with the same docs and medical center.  Sorry if this is a little negative, at this stage I'm just learning to cope with the new normal.

[Kathleen_Mc]

I wouldn't say your post is a little negative.......unfortunately we all have some scars from AN treatment, whatever that form of treatment may be. The main thing is you still stand by your treatment decision, the suckers is dead and you still enjoy reasonably good health! Great!

[Jim Scott]

Sunfish ~

Thanks for that generally positive update.  We appreciate the fact that the analysis of your recovery was grounded in realism, not wishful thinking.  Being frank is not necessarily being negative.   

The fact that your recent MRI showed 'widespread necrosis' and your hearing has not been diminished is great!  Your fatigue and sense of 'age' is quite common.  In 2006 I underwent AN debulking surgery followed by FSR.  Both procedures were very successful with practically no complications.  However, like you, I definitely feel as if I've 'lost a step' and no longer have the same level of stamina that I had pre-surgery.  Because I'm ancient (69) I can accept these deficits and work around them, as we all do to some extent as we learn to adjust to our 'new normal'.

Jim

[windy]

Sunfish,

I think you posted exactly what you have experienced in your AN journey and there is nothing wrong with that, at all. I believe someone telling the truth can be helpful to others, actually. If you are one of the individuals who experience post radiation or treatment issues, you know you are not alone. I think you have received thoughtful replies above from people that understand where you are coming from, as well. I appreciate your honesty and thank you for your post. Take care!

Windy

[ppearl214]

sunfish!

Oh, I don't deem it somewhat negative at all!  Congrats on being a 2 yr "toastie postie!"

As I quickly approach my 6-yr (wow!  ) "toastie postie" status.... I read your words and relate exactly what you note.  Over the years, I learned that the fatigue can relate so much to what you note (ie: the brain doing a readjust...... we know that brain tumors do cause fatigue) but that overall, the "Pros" have outweighed the "Cons" in our cases (as we know, "individual results may vary...").  I have to deem you and me a "success story" for the outcomes... the ultimate goal of the treatments on our AN's to stop further growth of the AN's.  We have almost identical results and honesty.... thrilled to hear with what you have shared.

Congrats on 2 yrs...... I know and understand learning to adjust to the "new you" can be a little difficult... but gotta tell you... for the activities you are noting (running, cycling, triath), heck... if I could only shed 30 lbs

Continued wellness!
Phyl

[CHD63]

Sunfish .....

I, too, have to join the group saying your post did NOT sound negative at all ..... just very realistic about how your life is somewhat changed.  But, you know what?  Any major event changes lives and having an AN is a major event.  You really have had a successful treatment and now know how to handle these new realities.

My guess is you will continue to adjust and find slow, but steady improvement in the wonkiness as your brain learns to adapt.  There are no instant fixes in AN treatment.

Best thoughts for continuing progress.

Clarice

[Mei Mei]

I also agree that you are not at all negative.   Our situation by definition is that the picture isn't that rosy and perfect and that's OK.   It's not negative, but truthful and honest.
Mei Mei

[leapyrtwins]

Congrats on the 2 year landmark, Sunfish 

Necrosis is great!!!

Jan

[Tumbleweed]

Hi, Sunfish:

I have to say that I too did not find your post to be at all negative. You've done a good service to those in W&W who are considering radiation treatment and want to know what might be the outcome.

Life, with or without an AN, is a dangerous proposition. Accidents, illness, war... I've come to accept that if it's not an AN, it's (eventually) something else. We take our lumps and soldier on.

The facts that you are still physically active and have useful hearing on your AN side -- not to mention the most important note, that your tumor's growth has been arrested -- are cause for celebration. It is normal to grieve your slight loss of vigor. Most of us here can relate. I too am not quite the athlete I once was. So I hike 2/3 as far as I used to. Hey, I'm still hiking! 

Thanks again for your honest and illuminating post.

Best wishes,
TW

[Larry]

The fact that you have necrosis is fantastic. Also, getting your hearing back to pre treatment level is also great.

Balance issues take time, patience and lotsa exercise but most of it does come back.

Stay positive


laz

[Tisha]

Sunfish,

Just reading your post today!  Congrats on the 2 year mark.  I think we've had similar types of symptoms (you are the only one that I know who has written about Nystagmus).  Of course, our timetable has been a bit different, but still similar, even the hearing loss regained with steroids.

I just had my 3 year MRI, and am waiting for the results.  I haven't had a nystagmus/balance attach in almost 5 months (the longest I've gone), although i still have wonky head now and then and treat that with 5mg valium.  When that happens, I do feel brain fatigued (so hard to describe to DH)...I just tire easily and want to sleep alot.  I don't feel as "sharp" mentally, and also find I don't like to carry on much conversation.

Other than the hearing loss regained, i was symptom free the first year and then slammed with symptoms the 2nd year.  Very intense around the 2 year mark, getting better little by little thru the 3rd year.  I'll post my results soon hopefully. 

I did find that 2 things seem to bring on the wonky head:  ambien and omega 3, believe it or not.

I was taking fish oil tablets for my high cholosterol, not understadning why the wonky headiness wouldn't go away for 3 weeks.  I went over my diet and the only thing that I had changed was the fish oil.  I immediatly stopped taking it and the symptoms went away in a day.  Then, last month I started putting 2 Tablespoons of ground flaxseed in my outmeal every morning.  After a week, wonky headiness came and wouldn't go away.  Googled Flaxsees and sure enough...chalked full of Omega 3?  For crying out loud!!!!  Now, I'm very cautious in taking supplements.

[Tumbleweed]

I did find that 2 things seem to bring on the wonky head:  ambien and omega 3, believe it or not.

Wow, I am really surprised that omega-3 caused your wonky-headedness (var. noun form of wonky head  ) to worsen. I don't doubt you, since you seem to be in tune with how things make your body feel. But omega-3 has the exact opposite effect with me. If I don't eat baked salmon once or twice a week, I feel more wonky-headed (adjective form of wonky head  ), and salmon is chock full of omega-3. And since omega 3 acids are anti-inflammatory, I would think they would help abate nerve irritation.

It just goes to show that everyone is different and what works for one person might not work for another.

Interesting post. Thanks.

Best wishes,
TW

[Tisha]

Hi Tumbleweed,

I think you are right in that all sorts of meds, supplements effect everyone differently.  When I was trying to figure out why it wouldn't go away, I googled Fish Oil and dizziness and sure enough that CAN be a side effect, especially is taken with other medicine.  I take Welchol for my high bad cholesterol (good cholesterol is VERY good).  It could be the combination.  The website (Livestrong), said that if you have that effect, you may want to get your Omega 3 vitamins from real food (which is what you do).  However, Flaxseed is "real food", so maybe I just can't tolerate it on an everyday basis...or in combination with the Welchol. 

I suppose this is a good thread in that it everyone should pay attention to what they consume and their symptoms afterwards.  I was really bummed about the Omega 3 because it does have anti-inflammatory properties ( I have osteoarthritis) and the it helps reduce cholesterol. 

Good talking with you...Tisha

[Tumbleweed]

Hi Tumbleweed,

 The website (Livestrong), said that if you have that effect, you may want to get your Omega 3 vitamins from real food (which is what you do).  However, Flaxseed is "real food", so maybe I just can't tolerate it on an everyday basis. 

That's what I found so interesting. When you first said the fish oil supplement made you dizzy, I thought maybe it was because it's not a whole food, but a concentrated extract. But the fact that flaxseed also makes you dizzy kills that line of thinking. It could very well be an effect of taking it with the drug (Welchol) you're taking... or not.

Anyway, it's fantastic that you figured it out (what was making you wonkyheaded).

Best wishes,
TW

[ppearl214]

Hi all
I LOVE the nutrition discussion going on... I'm learning quite a bit from it as well. Since the discussion is going off original topic but is a great discussion, suggestion is to start a new thread to keep it going on a focused topic/thread.  Since it could apply pre- or post-treatment, suggestion is to start a thread in "AN Community" or "Inquiries".  That way, if anyone does a "search" option regarding nutrition or vitamins or etc, some of the info will be in a focused thread.

Thanks!
Phyl