Almost 4 year post CK

[mindyandy]

I am almost 4 years post CK  My last MRI last year was good. My questoin is the past month or so I have been getting trigeminal neuralgia symptoms. Sharp zapping pains that feels like its in my bottom teeth (the root). I went to the dentist thinking it was a tooth problem but nothing was found. So here I am. Wondering if its the o'l AN acting up. Its the same side. I have an MRI scheduled next Friday. Keeping my fingers crossed. I have no other issues. but this TN is very painful when it flares. I have a hard time eating because I am so scared its going to act up. Its not fun.

Oh & I did post on CK website but Dr. M moved to thess.org so I posted there too.
Anybody post CK have these issues? I'm not supposed to this far out?

Thanks guys
Mindy

[CHD63]

Hi Mindy .....

So sorry about your trigeminal pain.  I can empathize with you completely on how horrible the zapping pains are.

My trigeminal neuralgia occurred years before my AN was discovered ..... and on the opposite side ..... so not related to my AN.  I did not have trigeminal involvement with my AN, but it is entirely possible for that to happen, depending upon where your tumor may be pressing on the brainstem.  Hopefully the MRI next week will be helpful in determining if this is related to your AN.

Keep us posted.

Thoughts and prayers.

Clarice

[ppearl214]

Mindy!!!!!     

Thrilled to see you.... been wayyyyyyy too long!

Congrats on 4 yrs! I can't believe it's that long now! Seems like yesterday!

I ran into some issues immediate post-CK (3-18 mos) but not Tri Gem issues.  Have you contacted the neuro-onc from your CK faciity to advise them of this?  Now, what I can share is this......... in speaking to Dr Medbery and my team and folks at Accuray, there are slim chances that even past 3 yrs post CK, things may crop up.  Can't say if this is related or not and they may not be able to link the 2 as well. TriGem issues can be "stand alone" issues as well so unsure to whether they are related or not.  TriGem issues can be addressed and suggestion would be as previously noted... advise the "neuro" -onc to your CK team of this new issue.

Thrilled to see you here and please keep us updated.  Would be curious to see what the docs say!

xo
Phyl

[mindyandy]

Hi Clarice. Thank you for posting. I'm assuming the TN pain has nothing to do with my AN. It would be just my luck. The zaps are horrible.
Hey Phyl....yes long time no see hahaha. I'm glad to hear that everyone seems to be doing well. I havent heard from JB lately. Has anybody here heard from him?
I am going to do my best to come here more often & not just when things crop up.

[leapyrtwins]

Mindy -

I had surgery so I can't help you with your radiation question.

Just wanted to say congratulations on the 4 year milestone.

Celebrate!

Jan

[mindyandy]

Hello everybody.  im still in pain  I had my MRI & nothing has changed . That's great at least. They upped my Dilantin so hopefully this works. I sure all you guys are doing well.