from a ck'er ..... numbness at an side - corner of mouth

[carter]

i had ck in Jan. 

since, i had swelling that created headaches and balance issues.  when drs finally gave steroids, most of this was resolved.  this was a couple of months ago.

i have lost almost all of my hearing - AN side.  this ishas not improved.

a few weeks ago, i noticed some tingling - numbness - ??  it comes and goes - it is at teh location of where my top and bottom lips join togeher ..  ....it is just an inch or two ----- when it feels numb, i can smile and i can move this part of the face ....

my drs are a pian --- so i try to avoid them unless necessary

just wondering if any one has a simular sympthom?  or if i have something elsse going on?

[amymeri]

I had that sensation before my surgery to remove my tumor.  It was a result of pressure on my Trigeminal nerve.  The corner of my mouth and right below the corner felt vaguely numb and there was a slight sensation of wetness there but when I would wipe my mouth it was dry. I had this off and on for 6 months or more before my tumor was discovered.  I suspect some of the swelling affected your trigeminal nerve.

[Jim Scott]

Carter ~

To answer your question directly: no, I don't think you have 'anything else going on', just typical tumor swelling post-radiation that, as Amy stated, is affecting your trigeminal  nerve.  Of course, that's just an uneducated opinion on my part.  I'm sorry you have to deal with doctors that are so difficult that you try to avoid them.  Frankly, only a trained, licensed physician can offer you the kind of credible medical opinion on this and other issues, that we, despite our experience as patients and our good intentions, simply cannot.

Jim

[FrankinCA]

You and I seem to have the exact same symptoms only exact is never a good word to use.  I am 1 year out and facial pain has slowing increased.  I am looking forward to my next doc visit next week and imagine I might get steroids too and hope that helps.  I guess we just have to hang in there and time will heal this. 

[ppearl214]

Carter ~

To answer your question directly: no, I don't think you have 'anything else going on', just typical tumor swelling post-radiation that, as Amy stated, is affecting your trigeminal  nerve.  Of course, that's just an uneducated opinion on my part.  I'm sorry you have to deal with doctors that are so difficult that you try to avoid them.  Frankly, only a trained, licensed physician can offer you the kind of credible medical opinion on this and other issues, that we, despite our experience as patients and our good intentions, simply cannot.

Jim

Carter, agree with Jim... you had your treatment approx 9 mos ago and you are in the timeframe for some of these things to crop up, if they do.  It is imperative you keep your CK team abrease of what is going on so they can treat you accordingly.  I don't necessarily care for my neuro-onc, but as an AN'er who had CK done, I have to respect him and his thoughts as he is part of my overall CK team.  We know issues can crop up anywhere from 3 mos to 18mos post treatment and you are smack-dab in the middle of that timeframe. 

Inform your CK team of what is going on. I am now over 3-1/2 yrs post CK... and even to this day, my CK team still follows me as its imperative for them to keep me healthy (which they have done) and to aid them for future AN CK cases down the road.

Phyl

[mk]

I missed this thread originally.
Tingling/numbness is because of the trigeminal nerve. This would indicate that your AN is now touching your trigeminal nerve, due to possible swelling. If I remember well you took steroids before and it helped you, you may be in for another round - but you need to consult your doctors as Phyl suggested. When is your next MRI? This could give you some answers as to what is going on.

Marianna

[carter]

thanks for the feedback ....  i had the tingly / nub sensation for a couple of days ... and it quit as i was ready to call a dr.

last night as i drove home - hard day at work ... i noticed a feelign in the corner of my lip again ---- or lack of.


at 8:30 this Am i talked to dr office.  someone is to call back .... 

i got on forum and found the words of encouragement... thank you!

[carter]

i talked to the dr last night...  he returned the call. 

he said that he doubted that the numbness is connected to the AN and treatment for it.

he started out how much better i was not to have surgery and have many issues.

when i expressed that i was plain scared ....  i have lost the hearign in tht eAN ear - he said - we knew that was going to happen - God i wished taht this was said before treatments!!!! 

he said that a nerve is close to the AN that controls the feeling on that entire side of the face and tongue.  He said that many things may irritate some portion of it.  just could not imaginme that the An or swelling was doing it.

when i asked about steroids - he went over my past reactions and that everything has a consequence.

he finally just asked me what i wanted to do?  i guess that he was sensing my dessire to not just sit back and wait to see if the face became a larger issue?  so i started steroids this AM.  i am gettign the mri that was planned for Nov moved to the near future ....

then he added to not think about this too much ... he will give me a call after the mri ...


carter

[FrankinCA]

I am 1 year post GK with a 2.5 cm tumor.  I think your doctor is nuts.  The whole side of my face and tongue continue to get worse and there is no way it is unrelated to the tumor.  I have been told by different sources that the size and location of the tumor will effect this nerve.  Also both swelling and shrinking will also have an effect.   I have had two MRI's in the past week and a half from different doctors and the two reports are significantly different.  Ones says the tumor shrunk to 1.5 cm the other report says it has only shrunk by 5%.   

I have concluded that symptoms will come and go as they please and there is no use worrying about it.  When you do get worried schedule an MRI.  As long as you are having MRI's from time to time life is good.  Good for you moving the MRI up in time.  My last one is today and the next one is in 6 months.  Go MRI!

[mk]

The numbness is CERTAINLY related to the AN. The trigeminal nerve is very sensitive, and can act up even with the slightest disturbance. Once it is impacted, swelling or shrinking can affect it. I consider myself very lucky that I am experiencing numbness, instead of the totally debilitating trigeminal nerve pain that ANs sometimes cause, and I have decided that this is a symptom I can live with.

About determining the amount of shrinkage, reporting a percentage is very vague. Is it percent of the length? Area? Volume? Does it include the portion inside the IAC? This is why the reports can be very conflicting and confusing. At this point, I would trust that the doctor performing the original treatment would be the reliable source, since his/her measurements would be consistent.

Marianna

[Sue]

I can't imagine why your doctor said that! Swelling can affect all those nerves in there.  I had the beginnings of facial numbness before I was diagnosed with my AN.  It rapidly has engulfed the entire AN side of my face, half my tongue, the inside of my mouth on that side, part of my lips.  The temple area on that side is totally numb.  Of course it is the AN, in my opinion.  All those nerves are very close together and my trigeminal nerve is doing a tango with that AN. I will have this for the rest of my life.  It ain't going anywhere.  Also, please don't start second guessing your treatment.  I had GK and there was not much hearing to be saved, and so I have very little hearing in that ear.  Other's have had GK or CK and have saved quite a bit of their hearing.  Surgical patients can also have great hearing afterward, limited hearing afterward or no hearing afterward, depending on just about everything.  It's impossible to say that if you'd gone another route that your hearing would have been saved.  I have a feeling you are thinking, Oh, I should have done this differently.  That does you no good at all.  All you can do is all you can do.  Hang in there.  Hopefully your symptoms will subside. 

Sue in Vancouver, USA

[NE Farmwife]

My facial numbness was the reason that I mentioned something being wrong to my doctor.  I didn't even put together myself that my hearing loss and facial numbness was related until I telling the doctor about my facial numbness.  Then a lightbulb went off and I added that my hearing was bad on that side also and then it all started to make sense.  My numbness stated last summer and came and went most of the summer.  Last fall it had gotten so that it was numb a good part of the time and after my diagnosis, it seemed to keep getting worse.  About Christmas time, it seemed to get somewhat better and when I had CK in January, I wondered what I was doing there.  It was really pretty good at that time.  It has never been as bad as it was last fall.  Maybe it was worse with all the stress of having been diagnosed with an AN and staying up late at night doing research. 

About 5-6 weeks ago, I thought that the rest of my hearing was pretty much gone and I tried a couple of weeks of steroids without any improvement.  My face was also getting to be a little more numb again about that time and the steroids helped with that.  Now I just take 2 Aleve in the morning and 2 again at night and it seems to be pretty much held in check.  The thing that bothers me is that the lower portion of my outside ear seems to be really numb but I can't tell if it is really numb or just that I can't hear that I am rubbing it.  I tried poking both ears lobes with a pin and they felt the same.  It is livable--just a wierd feeling.

[joebloggs]

How strange - I would think that the numbness is almost definitely related?  I wonder why your doctor said that?  Is he trying to protect himself?  That's just weird.  The whole AN side of my face (half tongue, roof of mouth, inside nose, eyeball, everything) went numb in May last year overnight - that is what led me to get diagnosed.  The numbness remained that way until I woke up from surgery and the all the feeling had come back.  Very strange - but yeah, it was definitely 100% related to the tumour.  Hope yours gets better with the steroids.

JB