Tumbleweed's MRI 5 years post-CK

[Tumbleweed]

Hi, everyone:

I just got the results of my 5-year followup MRI. Both tumors -- AN and HN (hypoglossal neuroma) -- are stable in size.  Since the HN has not been treated, Dr. Chang had ordered an MRI every 12 months for me, in order to keep a watchful eye on it for growth. But now that it has been stable in size for almost six years (since its discovery), he's moving my followup MRIs to 18-month intervals. That's fantastic news for me, as it will ease the drain on my pocketbook significantly (I have a high insurance deductible).

On a side note, I've had pronounced disequilibrium and intermittent vertigo over the past 10 days, which is why Dr. Chang ordered last week's MRI about a month ahead of regular schedule. It's interesting and noteworthy that I'm having these symptoms fully five years after CK treatment despite no tumor regrowth. For a more in-depth narrative on what could possibly be causing these symptoms so far along after treatment, please go to this link:
http://www.anausa.org/smf/index.php?topic=18727.15
Look for my post on the second page of this thread.

Best wishes to all,
TW

[Tumbleweed]

A few nuances on my post: my HN was first discovered in December, 2008, but a re-examination of past MRIs showed it was evident (but overlooked) since the first series taken in November, 2007.

My AN swelled significantly during the first half year after receiving CK, then shrank precipitously over the following 2-1/2 years. Over the past 2 years, it has been stable in size.

Best wishes to all,
TW

[mk]

Hi TW,

it is good to hear from you. Congratulations on your MRI results. I am glad that your AN is stable and that the HN is behaving itself. Great news that Dr. Chang is confident to move you to 18 months intervals. I hope that the disequilibrium episodes are transient, I guess we keep getting reminders of our condition now and then.

My MRI is upcoming too (on October 25th) and I hope that I will also receive good results, in spite of some recent headaches.

Best wishes,
Marianna

[hruss]

Hi TW, just wanted to congratulate you on your 5th anniversary!

Mariana, I am sure your MRI will be alright too. please share the results 

I am also part of the 5th ANiversary club - my ANniversary was last week too and all's been clear so far!


Best,
Hrissy

[millie]

Congratulations on the good report and stay hopeful.  I too have the episodes of disequilibrium and I always have the facial stiffness. God bless you. Mil

[Anomar11]

Hi TW,

Congratulations on the stability.  I'm also 5 years post.  This year I don't need MRI.  I just posted re: a second episode of vertigo also.  I had one last June accompanied by vomiting.  This one wasn't as bad but it had me down for a few days.  Of interest is both times, I had cold sores (same side as AN) and it makes sense to me that the herpes simplex virus could play havoc on a damaged nerve.  I recover fairly quickly relatively speaking.  Today is day 3.  I returned to work wonky headed and very tired which is expected.  It makes sense that our radiated vestibular nerves with dead tumors would be weakened and more prone to this type of thing.  I try not to fear it for this reason, but that's easier said than done when you're spinning and vomiting.  I always appreciate your input and relaying the messages from Dr. Chang.  Take care.

[Tumbleweed]

Thanks to everyone for expressing their well wishes here. btw, it seems like my dizziness is finally abating. It took around 3 months to return to my "normal" baseline. Vestibular therapy helped, but I think the main benefit was probably just the passage of time. I say that because I dramatically curtailed my vestibular therapy after hurting my back a few weeks ago (I didn't want to do exercises that might make me have to suddenly catch myself from tipping over, as that might've wrenched my back again), yet I still continued to improve. Which reinforces my belief that these episodes tend to be self-limiting over time.

Best wishes to all,
TW

[ppearl214]

TW,
Can I say a MAJOR congrats to you and at this point.....  take care of your back and continued wellness wishes to you!
Phyl

Thanks to everyone for expressing their well wishes here. btw, it seems like my dizziness is finally abating. It took around 3 months to return to my "normal" baseline. Vestibular therapy helped, but I think the main benefit was probably just the passage of time. I say that because I dramatically curtailed my vestibular therapy after hurting my back a few weeks ago (I didn't want to do exercises that might make me have to suddenly catch myself from tipping over, as that might've wrenched my back again), yet I still continued to improve. Which reinforces my belief that these episodes tend to be self-limiting over time.

Best wishes to all,
TW