1 Year Post-CK

[marystro]

I had my 1 year post-CK follow up last week - MRI shows no change in the size of the tumor but with more dark spots inside.  Audiogram is the same as my 6-month result.  At least this is what I measured the scans myself using the software and found out from the audiologist on my hearing test.  I just sent in the scans and audiogram report to Stanford for their official review - hope to hear back soon.

My tinnitus is still louder.  I sometimes have very mild numbness on my AN side (face) and little headache occasionally.  Overall Dr. Chang and Dr. Soltys said I am doing great.  Just hope the tinnitus goes away eventually.  Does anyone have similar symptoms at 6-mon and 1-yr mark?  If so, I am wondering if these symptoms do subside overtime and when?

Mary

[Mark]

Mary,

Sounds like a great report,  Congrats!  Sounds like the little bugger is dying the slow death.

I hope the Tinnitus lessens, but its hard to know with that one. Mine is fairly low level and is virtually unnoticeable unless I think about it, but there are times when it gets very loud. I'm not sure what's causing the headaches and numbness, but certainly in the case of the former I wouldn't be 100% certain it's the AN. If they are, then hopefully as the AN continues to die and hopefully reduce in volume, you might see some improvement

Mark

[Lorenzo]

Hi Mary,

Congratulations!

I had similar symptoms. Mine were due to tumour swelling after CK. They eventually stopped when the AN stabilised. Then I got some new effects from the AN shrinking back, when the nerves settled back again. That too  has now stopped. Lets see what Stanford say!  Still, great result! 

Ciao

Lorenzo

[ppearl214]

Hey Mary!

Congrats hun! Booger death is what we like to hear and sending huggles of continued wellness and a fugly death to that thang!

Just 16 mos post treat (wow! Feels like yesterday! Time really does fly!) and just had my MRI's done as well.... and hoping I have the same news as you!  At this point, my "T" is intermittent, mostly high pitched tones.  I have noticed it shift on occassion from my AN ear (left) to my right ear and will discuss with my team when I see them next week.  Occassional vertigo/balance still occurring, but partly due to the Chiari 1, so it's difficult sometimes for me to tell.  Facial numbness is pretty well gone in my case... I find it flares up when I'm over stressed or tired..... other than that, not too often. For the most part, all pre-CK symptoms are either gone or not really occurring.... very intermittent.

Hang in there... and again, congratulations on terrific news about your AN.... sounds like things are right on track! Way to go!

Phyl

[SuzeAN]

Great News!! Congrats!

I have had little to no side effects, from CK and good shrinkage and my last MRI was about 1/2007; treatment was 10/2005.  But I still have the tinnitus, sometimes noticeable sometimes not and there is some hearing loss on that side too.  Seems we have pretty much the same outcome which is great.

  I haven't read the boards here in months and it is nice to see good news!  Hope I can be of some encouragement to others reading this.  That was one of the first things I did when diagnosed was to check and see the "Post" information to give me an idea what to expect!

Cheers,
Sue (Las Vegas)

[krbonner]

What wonderful news!  Congratulations!

 

Katie

[Lorenzo]

GReat news Phyl and Sue! We seem to be forming a pattern with CK results!  lol 
ciao, Lorenzo

[tsl]

"I had similar symptoms. Mine were due to tumour swelling after CK. They eventually stopped when the AN stabilised. Then I got some new effects from the AN shrinking back, when the nerves settled back again. That too  has now stopped. Lets see what Stanford say!  Still, great result!"

Lorenzo,
I know that you travelled across the ocean to be treated at Stanford.  When you ret'd home, who did you see when the swelling, side effects, etc. started?

I've been wondering how people got follow up treatment after they've travelled a goodly distance for radiosurgery or surgery.

-Theresa   

[marystro]

It depends on the severity of your side effects/symptoms.  In my case, since they are mild, the good doctors at Stanford do not require me to be in person (although they'd like to see me if I am in town anytime  ).  I send them my MRI scans and audiogram report.  They review them and call or email me to let me know their review results.  I also have a San Diego (where I live) primary care physician who orders the MRI and audiogram for me locally.  He also reviews the scans and gives me his opinion.  Stanford doctors cc: my local doctor their review results as well.

Mary

[bpham]

Phyl,

Do you expect the initial AN symptoms to go away with the CK?

Also the facial numbness, did you experience that before the CK also?  Currently I have some of the numbness and also the twitching, will that get worse in the next few weeks since I've not talked to HEI and Dr. Chang yet and will not expect to make any decision as to which way to go soon.

I'm anxious and nervous at this time as to what will be my decision and the end results.

Thanks for all the time you and other have spent on this forum for us.

[ppearl214]

Phyl,

Do you expect the initial AN symptoms to go away with the CK?

Also the facial numbness, did you experience that before the CK also?  Currently I have some of the numbness and also the twitching, will that get worse in the next few weeks since I've not talked to HEI and Dr. Chang yet and will not expect to make any decision as to which way to go soon.

I'm anxious and nervous at this time as to what will be my decision and the end results.

Thanks for all the time you and other have spent on this forum for us.

Hi bpham.
Glad to help around here... a thankless job but hey, someone gotta do it!   Actually, a great way for me to give back to the AN community as everyone has been there for me.

To answer your question....I note that the size of my AN, at the time of treatment, was/is the same size as your's....Like you, I have had facial numbness prior to CK.  Couldn't figure out why until I got my AN diagnosis.  Since CK, it comes and goes, but I have to say, in my case, it does appear to have lessened.  My pre-treatment symptoms were not all that prevelant and difficult for me to confirm if it was the AN or my Chiari 1 diagnosis (as they both share many mirrored symptoms).  In recent meetings with my surgical team (my back up team, if need be) and my CK treatment team, it seems that the majority of my symptoms do stem to my Chiari diagnosis, granted the only symptom that plagues me bad is my balance (those here that have met me have seen me in action with my "3rd leg" -- cane -- as it helps with my balance).  I have slight hearing loss in my AN ear and as of last week during my hearing test, it was confirmed that my hearing is at the same level it was 16-18 mos ago, pre-CK.  Overall, I have to note, in my case, I have been very fortunate that my AN symptoms have been mininimal and as long as I am not overtired/fatigued/stressed, my AN symptoms, including the facial numbness, is at a minimal.

Not sure if that helped.... it's 5:56am and not sure I'm fully awake.

I know you are doing all the research you can and am tickled that you are here, reaching out and asking questions... to become the best well-informed patient you can be.... hang in there.. and know we are all here to support you during this time.  Once you make your decision, you should be able to feel that monkey off your back and time to roll on... and we're here to help!

Phyl

[marystro]

Finally got my 1 year report from Dr Chang at Stanford.  It says "unchanged" in size with "slightly better" in speech discrimination although my audiogram shows no significant change.  Another MRI in order next 6 months.  Happy so far since the tumor is stablized!!!

[mellowrama]

Hey Mary,

Dark spots sound like great news!  I'm only a month or so behind you in ck treatment - doing well.  Numbness and tingling occasionally on my face still, every once in a while white noise...and mostly dizzyness (when shopping!) .

Last mri the tumor was larger supposedly due to swelling...so yes, I think my symptoms are similair although they seem to be less and less often.

best, melinda

[BevM]

Hi Mary:   I haven't been on the forum in awhile but since I just had my 1 yr MRI and I was just behind you in treatment, I thought I'd check in and there you are!

My Kaiser Doc orders my MRI and audiogram which I have just sent to Stanford.  Kaiser reports the tumor as stable bu t on other information.  I'm hoping Dr. Adler will be more informative.  My audiogram is about the same as 6 mos. ago with slight change.  I am struggling with my hearing and Tinnitus but I think my  balance is a bit better (or I'm just adjusting).

Glad to return to the forum and find all of y ou who have helped by your comments and just being here when I return to check in.  Thats so helpful.

Best wishes to you all!

Bev

[ceeceek]

Hey Lorenzo...so sweet of you to email..I will write soon I promise,,this is all I was up for today...down due to weather being lousy mroe than anything and having a cold....funny, I had strep throat right after brain surgery,,,,I need to stay away from those Drs offices!
Was wondering your effects of the tumor shrinking..how long did it take etc..theyreally dont expect mine to swell...remember I am slightly different case...mine is calcified somewhat already and shrinking is actually more of a concern for me,,I am worred it will retract my eye nerves back along with it since they have all stretched....including my carotid..hope it does not collapse on itslef...uggh just the think....ikkky...for real though, I am hopefull my acupuncturist can actually get mybody to absorb my now dead growth,,but wonder about he effects of the shrinking.....eveyone feel free to pipe in on theis one as I havent read too much on it iether way..
Sorry for bad typing...I adapted Lorenzos style after surgery and still havent recovered......lol
Ceecee