24 months post CK - have had symptoms for past 4 months! Any advice?

[lalehjg]

Hello All.

Similar to a number of people who posted recently, I too am a voice from the past.  I was diagnosed with a medium sized right-side AN in January of 2010.  Had CK at Stanford in April of 2010.  Had some flare-ups here and there for about a year or so, but still have had a generally amazing two years, exercised regularly, and my quality of life has been better than I could imagine.

Things changed suddently in mid-December of 2011 - and since then I can remember only a few times (days) when I have been symptom free.  I had a follow up MRI in January of this year, and it shows the tumor is responding well and has decreased in size slightly, which is great news. 

Still, it has been 24 months now.  Has anyone had these symptoms after 24 months?  They are somewhat relentless and make functioning very very difficult:

1) a sense of pressure and fullness in my skull on the lower right side, sometimes associated with a dull pain
2) tinnitus - coming and going
3) dizziness and vertigo - it's as if the world is moving around me, and I have to concentrate to keep it still - this happens even when I am about to sleep or about to wake up - I feel I am on a swirling, moving platform all the time
4) difficulty reading or writing because I am unable to fix my gaze
5) fatigue - lots of it - need lots of sleep

I am concerned and, although usually a very positive person, am losing my positive outlook given these symptoms.  I am asking myself:  is this going to be my life into old age (I am now 44)?  I hesitate to take any cortisone because I am afraid it will cause lots of other problems now or down the road.

Any advice you have would be really really great!  Any insights you may have would help too.  Thank you for your support and encouragement!

x

Laleh

[pjb]

Hello All.

Similar to a number of people who posted recently, I too am a voice from the past.  I was diagnosed with a medium sized right-side AN in January of 2010.  Had CK at Stanford in April of 2010.  Had some flare-ups here and there for about a year or so, but still have had a generally amazing two years, exercised regularly, and my quality of life has been better than I could imagine.

Things changed suddently in mid-December of 2011 - and since then I can remember only a few times (days) when I have been symptom free.  I had a follow up MRI in January of this year, and it shows the tumor is responding well and has decreased in size slightly, which is great news. 

Still, it has been 24 months now.  Has anyone had these symptoms after 24 months?  They are somewhat relentless and make functioning very very difficult:

1) a sense of pressure and fullness in my skull on the lower right side, sometimes associated with a dull pain
2) tinnitus - coming and going
3) dizziness and vertigo - it's as if the world is moving around me, and I have to concentrate to keep it still - this happens even when I am about to sleep or about to wake up - I feel I am on a swirling, moving platform all the time
4) difficulty reading or writing because I am unable to fix my gaze
5) fatigue - lots of it - need lots of sleep

I am concerned and, although usually a very positive person, am losing my positive outlook given these symptoms.  I am asking myself:  is this going to be my life into old age (I am now 44)?  I hesitate to take any cortisone because I am afraid it will cause lots of other problems now or down the road.

Any advice you have would be really really great!  Any insights you may have would help too.  Thank you for your support and encouragement!

x

Laleh

Hi, I at first wasn't going to respond I did not have radiation I chose surgery but I can related to almost all of what you have written my tinnitus is severe and constant the dizziness almost as bad and the rest right on...I have come to accept this is the new me and it is difficult but I try to keep positive and say that it could have been worse and truthful sometimes it helps and sometimes it doesn't ! Have to focus on the positive that we are alive and to not let this thing wear us down..My thoughts and prayers are with you and hoping it gets a little better I was told we have to have patience...

Best Wishes

[lrobie]

Laleh,

I am pre-treatment and have all of the symptoms you listed except #4.  However, I could insert into #4 that I have extreme difficulty with my wording when I am talking to someone.  I am constantly saying..."what's that word?".  I have constant tinnitus now.  It generally stays at the same level/tone, but throws in some high pitches now and then.  The sound reminds me of someone with hearing aide when it whistles.

I'm not trying to make you feel worse about your symptoms.  I have tried to learn to live with them the best I can.  If I dwell on them, they seem to get worse. 

Lisa

[pjb]

Laleh,

I am pre-treatment and have all of the symptoms you listed except #4.  However, I could insert into #4 that I have extreme difficulty with my wording when I am talking to someone.  I am constantly saying..."what's that word?".  I have constant tinnitus now.  It generally stays at the same level/tone, but throws in some high pitches now and then.  The sound reminds me of someone with hearing aide when it whistles.

I'm not trying to make you feel worse about your symptoms.  I have tried to learn to live with them the best I can.  If I dwell on them, they seem to get worse. 

Lisa

I forgot that as well and forget typing I should leave up what I write one day and not proof read it 3 times I cannot believe some of the things I write

Best Wishes,

[TXAN]

I also had the CK at Stanford 8/2010 for my 2 cm AN. My post treatment symptoms are very much the same as pre-treatment which is mild (balance, tinnitus). I've been taking Jiaogulan right after treatment and Curcumin just a few months ago. You can google for yourself about these supplements. I am not a doctor and what I believe may help me, may not help others.

Regards,
TXAN

[MinhVietNam]

My all symptoms appeared after 24 months too. I have all most your symptoms except 4 but I need replace the number 4 that I loss all hearing.
I am trying many ways to solve but except Steroids, nothing seem worked.
I feel sorry but I think my case is similar and may be we must to accept and adapt to its. Hope time will help to recover.

I am 30 months post CK.

[sunfish]

Hey, Laleh!  Remember me?  We had our diagnosis/treatments at about the same time.

I did a two-year update in March, so look for my post from then with more detail about how I'm doing.

My hearing has been stable.  My balance and equilibrium problems have come and gone and come back again.  Right now, I've been pretty steady for several weeks.  I hope it stays that way, but it does seem to come and go.  I have lots of vision problems, which the docs assume are related to the AN.  I think some very slight nystagmus causes the problems.  I can read OK, but recent visit to the eye doctor and efforts to get new glasses/contacts have made me aware of how crummy my vision is.

Symptom of the month is jaw problems (TMJ or TMD), which turns out not to be related to grinding teeth at night (I don't), but due to imbalance in jaw muscles on each side of face (Gee, I wonder what caused that?).

Luckily, no pressure or pain or headaches.  And very little tinnitus.  But sometimes I do have strange sensation/perception when I turn my head toward non-AN side.

So very good to hear from you again!  I think we'll probably always struggle a bit with our "issues," but overall I've made a good recovery.

[Tumbleweed]

Laleh, so sorry to hear you're going through this rough patch. Unfortunately, these symptoms can happen even after 3 years have passed, let alone 2 years. But the fact that your tumor has shrunk slightly is a good sign. At least you don't have to worry that your symptoms are caused by a failed treatment.

An AN needn't swell in size in order for there to be inflammation present. If I remember correctly, Dr. Chang called this phenomenon "clinical inflammation." In any case, it's clear that your balance nerve is irritated for some reason, possibly from clinical (internal) inflammation. Try cutting out foods that cause inflammation (such as refined sugar) and see if your symptoms abate. Also try taking some anti-inflammatory drugs (ibuprofen or Aleve) or natural anti-inflammatory enzymes (bromelain, Flavenzym or Wobenzym) and see if that helps. (Take the enzymes on an empty stomach, or they won't work; take the drugs on a full stomach, of course, or they might cause your stomach to get upset.) I bet it does help, if only providing partial relief.

Also try to walk a lot. That will retrain your brain to ignore all the imbalance and vertigo signals it's receiving. Of course, have someone walk with you to make sure you're safe and can make it back home!

The more you can cut out foods that cause inflammation and exercise your vestibular system, the sooner you're likely to feel better.

Just my two cents...

I hope it helps!

Best wishes,
TW

[producer]

Can I just add my opinion on this?

Its possible since your tumor is shrinking that parts of it that were attached/compressing nerves are coming unattached as it shrinks and therefore causing a temporary upset there??

I know its kind of an odd reasoning but then again it kinda makes sense..

all the best, im sure these will be just passive..


chris

[Tumbleweed]

Its possible since your tumor is shrinking that parts of it that were attached/compressing nerves are coming unattached as it shrinks and therefore causing a temporary upset there??
chris

Actually, just the opposite is likely to occur: When a tumor shrinks and takes pressure off a cranial nerve, it's function might improve and symptoms abate. This according to Dr. Chang.

Best wishes,
TW

[producer]

Ok, well I certainly hope that is the case anyway TW!   

[Tumbleweed]

There is no guarantee, and in fact those who report an easing of their symptoms as their tumor shrinks are the lucky ones. I just thought I should nip in the bud any misunderstanding about what might happen as a tumor pulls away from a previously impacted nerve. Since Dr. Chang is the expert, I felt it was appropriate to relay what he told me in this regard.

This conversation arose when I experienced a rebound in my low-frequency hearing response concurrent with my AN shrinking. Dr. Chang conjectured that my improvement might be attributed to my AN putting less pressure on my hearing nerve.

Best wishes,
TW

[ppearl214]

Laleh! GREAT to see and hear from you!

Ok....... I can't believe it, but... 6 yrs later/post CK for me..... I still have the occassional issues as you note. At this point, I haven't completely chocked them up solely to having radiation/CK treatment but also to being an AN family member, regardless of treatment option.  Over time, I've learned just to adapt to the occassional enhanced tinnitus (esp. when I'm overly stressed)..... the enhanced wonkiness (esp with bad weather or such)..... etc.  You get the idea.  My AN is a total blob at this point and has experienced shrinkage (not common .... but not unusual either) and it's just sitting there doing nothing (fine by me!)

So, for me..... I believe part of it is post-radio (again, regardless of which radio protocol) and part of it is being a family member of the AN world.

Just my 2 cents.

Again, thrilled to hear from you!
Phyl

Hello All.

Similar to a number of people who posted recently, I too am a voice from the past.  I was diagnosed with a medium sized right-side AN in January of 2010.  Had CK at Stanford in April of 2010.  Had some flare-ups here and there for about a year or so, but still have had a generally amazing two years, exercised regularly, and my quality of life has been better than I could imagine.

Things changed suddently in mid-December of 2011 - and since then I can remember only a few times (days) when I have been symptom free.  I had a follow up MRI in January of this year, and it shows the tumor is responding well and has decreased in size slightly, which is great news. 

Still, it has been 24 months now.  Has anyone had these symptoms after 24 months?  They are somewhat relentless and make functioning very very difficult:

1) a sense of pressure and fullness in my skull on the lower right side, sometimes associated with a dull pain
2) tinnitus - coming and going
3) dizziness and vertigo - it's as if the world is moving around me, and I have to concentrate to keep it still - this happens even when I am about to sleep or about to wake up - I feel I am on a swirling, moving platform all the time
4) difficulty reading or writing because I am unable to fix my gaze
5) fatigue - lots of it - need lots of sleep

I am concerned and, although usually a very positive person, am losing my positive outlook given these symptoms.  I am asking myself:  is this going to be my life into old age (I am now 44)?  I hesitate to take any cortisone because I am afraid it will cause lots of other problems now or down the road.

Any advice you have would be really really great!  Any insights you may have would help too.  Thank you for your support and encouragement!

x

Laleh