Quandry over shooting pain

[Patti M]

I am 3 1/2 years post FSR for a 2.8 cm tumor.  I have some facial numbness on the tumor side that extends to my mouth and tongue and minor balance problems.  I am doing very well except for a recent problem.  Several months ago I experienced a sensation in my tongue similar to the sensation that occurs sometimes when novacain is injected during a dental procedure. It was more annoying than painful, and happened several times a day over the course of a couple days and then stopped completely until yesterday.  Yesterday it came back with a vengeance and was very painful, like knives cutting into my tongue.  I had over 10 of these episodes each lasting around 10 seconds, which by the end of the day had really worn me out.  I have had a few more minor episodes this morning.  Has anyone found a way to treat this or have any suggestions?

[EJTampa]

Hi Patti,
 
I didn't have FSR, but rather surgery.  I'm not sure if this is related to your tumor or treatment, but I think you should let your physician know about it right away.  At least see your primary care doctor, and if they can't find anything, move on to the doctor that did your treatment.
 
Ernie

[Jim Scott]

Patti ~

I did have FSR (following surgery).  I would reiterate Ernie's suggestion to contact the radiation oncologist that was in charge of your FSR and alert him to this new, sudden pain.  I'm not a doctor and won't speculate on the cause - but he can.  You may need an MRI to see if any nerves are being disturbed by a swelling (and dying) tumor.  That kind of pain needs to addressed.  If it is swelling related, steroid treatment may help.  Again, call your doctor.

Jim

[Patti M]

Thanks so much guys for your responses. As you advised, I have put in a call to my neurosurgeon's office and am waiting for a return call.   I have Kaiser here in Sacramento, CA, but had my treatment at the University of California Davis Med Center because I wanted FSR and Kaiser here only does Gamma Knife.  All my follow-up care though is with Kaiser.  I had an MRI the beginning of December and the tumor has had little if any shrinkage since treatment in 2005, but at least there has been no growth.  I did look around on the AN website a bit before making my original post and what I was able to find seemed to indicate there wasn't much the doctors could do about this.  I'll wait to see what my doctor recommends.  Thanks again for your kindness in responding.

Pat 
Sacramento, CA

[mk]

Pat,

the symptoms you are describing seem like trigeminal nerve symptoms. Your trigeminal nerve may be irritated, or there may be some inflammation. As everyone else said you should speak to your doctor. If there is no actual growth, maybe a course of steroids to resolve the inflammation will help.
Hopefully your symptoms will resolve soon.

Marianna

[MAlegant]

I agree with Marianna--trigeminal issues, I'll bet--call the doc.  Good luck,
Marci

[Patti M]

Thanks Marianna and Marci.  I got a call back from my doctor's office today and they want to see me on Friday.  I think it's trigemenal issues also but don't understand why now 3 1/2 years after treatment.  The facial nerve has been involved from the beginning of diagnosis. In fact, it was the reason the AN was finally diagnosed because I complained of my lips being slightly numb on one side.  Just found out that Kaiser here now does FSR at their nearby Roseville, CA, facility.  Good to know they are expanding their services in this area. 

Thanks for your responses and good wishes.

Pat 
Sacramento, CA

[mk]

Hi Patti,

just to clarify, it is the trigeminal nerve (nerve V) that causes symptoms like numbness, pain etc. The trigeminal nerve is a sensory nerve. The facial nerve (cranial nerve VII I think?) is a motor nerve, responsible for movement. With an AN of your (and my) size it is not uncommon to affect the trigeminal nerve at its root entry to the brainstem, thus causing numbness etc. This is how I found about my AN too. But like you I am puzzled as to why this new problem would appear now. I have heard that sometimes symptoms may appear when the AN is shrinking. By doing so it may "pull" the nerve upon which it is stuck. I am not sure if this is a valid explanation.
Let us know what your doctors say.

Marianna

[CHD63]

Jumping in a little late here .....  Sure does sound like the pain I had from trigeminal neuralgia (on the side opposite my AN) many years ago.  Will be curious to see what your doctor had to say ....

Clarice

[Patti M]

I saw my neurosurgeon today.  He said it is definitely the trigemenal nerve that is causing this problem because my tumor is pressing on it. He said it is not uncommon for problems with this nerve to occur, then stop and not occur again for months.  He has put me on a low dose of tegretol and I'll see him in 6 weeks to give it time to get into my system and see how it's working for me.  I hope this takes care of it because my only other alternative is surgery; and I know that would come with its own share of problems...possibly worse than those I have now.  I give thanks everyday that I am doing so well and that this tumor has had minimal impact on my quality of life.  My benchmark is, if I can still ride my bicycle I'm doing great.  Thanks everyone for your support.  I am very grateful just to have someone out there to talk to who is dealing with AN.

Patti )