Symptoms 2 years after GK

[Mia]

Hello

I had GK 2 years ago. Last May I had an MRI that showed some slight growth, do not know how much.
The doctor means it is swelling. I didn`t knew that swelling could occur so late, what do you think?
Next MRI in November.
I am lately having some strange feelings in my face on the AN side.
It is like a tight feeling, pressure who spread in a area, feels numb, but when I touch the area I have feeling there.
It an can bee on the eye or the area close the the eye, high up on the cheek.
Some experience with this? Should I call the doctor or just wait to next MRI?

Great forum!

Mia

[ppearl214]

Hi mia

I'm sorry to hear you are running into these issues..... from my own experience (post CK)... I also ran into some post-radio swelling further down the road  (I am now 3.5 yrs post treatment).  As recent as this past December (just shy of 3 yrs).  Was put on short term course of steroids to try to help the situation. I quizzed the docs on the CK Patient Support forum and it was noted to me that although not common, it was not unusual either.  Please contact your GK team for follow up on this. They may order the MRI (although swelling could be going on "inside" the growth that may not reflect as an "outward" view on the films) and they can recommend best course of action for you.

Be well,
Phyl

[GRACE1]

I would go ahead and contact the doctor.  Sorry you are having problems.

Grace

[leapyrtwins]

Mia -

it may be nothing, but I agree with Phyl & Grace.  You should check in with your doctor.

Good luck and please keep us posted.

Jan

[Mia]

Hello

Thank you for yours opinion.
I will call the doctor later in the week. Do not feel ready for it yet...
Getting tired of taking MRI`s and the whole AN. 

Mia

[leapyrtwins]

I will call the doctor later in the week. Do not feel ready for it yet...
Getting tired of taking MRI`s and the whole AN. 

Mia

Totally understandable; we've all been at that point. 

Hang in there and remember you are not alone.  We're here for you.

Best,

Jan

[MaryBKAriz]

Hi Mia,

I am sorry you are having issues. I want to cheer you on and agree you might want to run this all by your doc. In one of the seminars I attended this past week at the AN seminar (on imbalance) the doctor speaking said 2 years is a peaking period for radiotherapies. I have heard the 2 year reference before but never in terms of peaking at that point. I am not at 2 years yet but I do know I had swelling.

Take care!

Mary
 

[Mia]

Hi Mary

You know I am from Norway, so have some trouble with some English words.
With peaking period, do you mean that the AN is on top? and that it will be better after this time?
Have not heard about this, only that at 2 years mark they can see if the treatment is a success or not.

Mia

[Mia]

Hello again

I have been talking to the dr., and he wanted me to wait for the MRI in November.
Said my symptoms could go away, and if it got worse I should contact them and then take a MRI.

The symptoms are still there, and some days I have got a weird taste in my mouth, but hope it is something who is pasing.

Mia

[Sue]

Mia, it's the nerves.  I have a salty/metallic taste in my mouth.  Mostly it's salty, thank goodness.  The metallic taste isn't very nice.  The tumor is doing a fandango with your nerves and it just does all sorts of weird things then.

Hang in there,

Sue in Vancouver USA

[mk]

Hi Mia,

as Sue mentioned, it's the nerves. Specifically the symptoms you are describing are typical of the trigeminal nerve (nerve V) being affected. An AN may impinge on the trigeminal nerve on its root entry to the brain stem, triggering these symptoms. I am not a doctor of course, but based on what I know, if you didn't have any of these symptoms before, their onset most certainly mean that there is some swelling, or growth. I hope it is just swelling. In that case a short course of steroids could help, did your doctor mention anything about steroids? Is it possible to have the MRI moved a bit earlier?

Marianna

[Tumbleweed]

Hi, Mia:

I'm sorry to hear you're not feeling well.

GK is very similar in effect to CK. Dr. Chang (esteemed Stanford-based doctor) told me the peak time for tumor swelling and its associated side effects is 6 to 18 months after treatment, but that it can occur (very rarely) as far out as 3.5 years after treatment.

Definitely tell your treating physician what's going on and ask him what can or should be done about it.

I hope you feel better soon!

Best wishes,
TW

[Mia]

Hi

They have not mentioned steroids. The Dr. said I should call back if something more happend, so they could give me an earlier MRI, but also said that this thing is growing slow and I did an MRI late in May.
Last night I felt numb on the right side inside my mouth and some in the right side of the tongue, but it is better today.
I hope it is just swelling and that everything will go away. I will not call the Dr. yet, will not complain too much.

Mia

[FrankinCA]

You are doing the same thing I am doing post KN of about 11 months.  The thing that drives me crazy is the back and forth.  One day I am great and the next day I am taking pain pills.  When I get overly nervious I call my Doctor.  That is what he is there for.  Please keep us posted as to what happens.

Thanks
Frank

[kahekili]

Aloha:
I had GK procedure 4 months ago.  Metallic taste is worse now.  Equilibrium also worse.  Neurosurgeon that did the GK here in Hawaii also quoted "2 years" before anything significant expected to happend to AN.  3 month post op MRI indicated no change in size.  Will go back again in another 2 months for the 3 month check up.  Looking to get a 2nd opinion at The House Ear Institute.  Do you think I am just impatient?  How long should I wait?  This is all new to me and I am certainly the rookie on this webs site.  But hearing from all of you really makes a difference.

This site rocks!

Kahekili on Maui