Facial Numbness before treatment

[pjb]

Thanks Nann and PJB, appreciate your responses.

Nann, it's good for me to know that the small AN could be causing the numbness...it's really stressing me out, I keep researching and most say that the larger AN's cause the numbness.  At some times, I feel like the numbess is not only on the AN side, but a little patch on the otherside of my face....but from what I have read, it should be only on the AN side....correct?  I plan to tell the doctor's everything on 11 April.  I thought I would consider the W&W if that was offered, but at this point...after having waited for 2 months to get an appointment, I've realized I may not be the W&W kind of person....this is very stressful not knowing.  Since your AN was the same size as mine, did you have any side affects after your Mid Fossa surgery?  I pray your MRI comes out well.  I will look for your post after your MRI!  Good luck and thank you!

PJB, I definetly am doing the research and will take your advice on finding the right team of doctors!  Thank you!!

I just cannot say that enough to people because I did not do the research and my results were not good but I still cannot complain my motto is it could have been worse and I blame myself for not being on top of my own care... and if I can save just one person and of course more from not making a mistake I would be thrilled in helping..

Best Wishes,

[millie]

Good morning Meshell-
I just wanted to say I am experiencing the same symptoms-ear ringing, fullness, slight feeling o "out of left hemisphere" experience, and occasional tingling/numness.  Yesterday my ear rang all day.  Like you, I am a bit nervous in watch and wait and prefer to be rid of this thing, but I am trying to stay active with my mind on other things and the day passes better for me, (raking, babysitting)...I have an ABA in two weeks and I hope that tells me how successful treatment(s) might be.
  PJB and Nann-where did you have your treatments done?

[nann]

Hi Meshell,
Before surgery, I too had some numbness on the other side of face.  After surgery I have had quite of few side effects. They cut my equilibrium nerve on An side, so I'm pretty off balance. ( The Left side is supposed to compensate balance in time). I have pressure in my head especially when bending over or tilting head down, my head feels full as well as ears, and some slight ringing in AN ear. An side nasal canal feels plugged frequently. Also having eye issues, sometimes they feel numb, dry and  various vision changes ( like problems with eyes tracking). But I still have the tumor so not sure whats causing what?? And also I have other vision problems so can't blame it all on the surgery. I also wanted the tumor out. Its such a hard decision. But since surgery, really haven't been the same. Just trying to adjust and contemplate doing it all over again. Try to keep smiling

Mid Fosa, Seattle

[Meshell201]

PJB, Nann and Millie, thank you all for your responses.  I'm convinced by your posts that I need to do the research, ask as many questions as I possibly can and try to make an informed decision on how to proceed.  I try to keep busy too, at work it's easy to do...especially since it's noisy in the office, I tend not to hear the noise in my ear so much...the light headedness and headache, or what I call head pressure, is another story.  Some days are better than others, but I never know when the lightheadedness will kick in.  The numbness, the newest symptom, has thrown me for a loop, especially since I was feeling it on the non AN side...but if you have experienced it, then at least I know I'm not imagining it!  My appointment is next week, and I hope to have more answers after that than I have questions!  I'm so sorry that you have experienced what you have.  I pray that it gets better for you all and the future holds a brighter outcome.  I will try to keep smiling, but this has been the hardest and most stressful thing I've experienced.  I've had 2 surgeries not releated to the AN before, but the doctor said, this is what we need to do...and it was done!  No research, no decision making on my part....with this AN, after reading your posts and others, I know that research must be done and questions must be asked.  I thank you all for your support!!   Look forward to your future posts.  Take care and again, thank you so much!!!

[Meshell201]

Lou,
At this point, I only have been told I have an AN by my local ENT.  Next week I will ask about the facial numbness and possibly involvement of the facial nerve.  Appreciate you sharing your expereince.  I pray your MRI on the 30th gives you good news!  Thank you again!!

[pjb]

Good morning this is major all surgeries are major but we are talking about your brain so what I find now helps alot is have a list with you and double space it for answers. I have columns one for family history, past surgeries and illnesses, medications and symptoms go into everyone of your appointments prepared there is a section somewhere on this site where someone had written down very important questions hopefully someone will remember and we can locate it for you before your appointment..You have to be your own advocate I had learn the hard way I use to fight for others rights with insurance and care but did not do my own..But that is okay I just have to accept the new me and in ways fortunate it could have been worse. The main thing is that we are all here to write about it so that sums it up.

Good luck next week will be waiting for your post...

Best Wishes,

[pjb]

Good morning Meshell-
I just wanted to say I am experiencing the same symptoms-ear ringing, fullness, slight feeling o "out of left hemisphere" experience, and occasional tingling/numness.  Yesterday my ear rang all day.  Like you, I am a bit nervous in watch and wait and prefer to be rid of this thing, but I am trying to stay active with my mind on other things and the day passes better for me, (raking, babysitting)...I have an ABA in two weeks and I hope that tells me how successful treatment(s) might be.
  PJB and Nann-where did you have your treatments done?

Meshell I went to NY Presbyterian and now will be going to NY Langone....

Best Wishes,

[lrobie]

Meshell,

I am pre-treatment and am beginning to get occasional tingling on the entire AN side of my face, tongue, etc.  I, too, sometimes feel little bits of it on the other side of my face, generally my lips.  I'm guessing it's all related to my AN.  Good luck to you at your appointment.

Lisa

[Meshell201]

PJB & Lisa, thank you.  Great idea, I will most definetly start searching for the list of questions and make a spreadsheet like you suggested.  I know that once I get into the doctor's office I will need to have all my questions written down, otherwise I'll just draw a blank and forget what I wanted to ask!  I've told my friends and family that if this tumor was anywhere else, I may not be as stressed as I am, not to make light of other surgeries, but, like you said, this is major ......this is my brain and it scares the heck out of me!  I can only relate the numbness to the AN...I've never had this before...my AN side is mostly numb and the other side of my face has spots that are numb, plus my tongue..it's such a strange feeling.  I will post what I find out next week...I hope you all do the same.  Thank you again for everything and I pray your appointments give you good news!

[Cindyswart]

My facial numbness began in 09 and lasted until tumor removal in 11. the entire right side of my face, the right side of my mouth, right side of my tongue and right side of my mouth. Since tumor removal, I am back at 90% except for my tongue, that at about 75%. My tumor was directly effecting my facial nerve and the tumor was pressing against my brain stem.

[Meshell201]

Cindyswart -- My symptoms sound just like yours.....2 months ago when I had my MRI, I had no facial numbness.  This makes me wonder if my tumor is growing.  I went back and read your previous posts...wow, you had and still have a postive outlook!!  I believe it was your post that mentioned shingles and fever blisters  -- I've had shingles several times.  Small outbreaks that began when I was a child (about 8 years old) and the last outbreak was about 15 years ago.  I never had a fever blister until about 3 years ago....and in that time, I've had probably a dozen outbreaks.  I'm not sure why I started having them....I've never had any tests related to that.   I wish you continued health!!!  Thank you for responding, I'll post what I find out next week.  - Michelle 

[Cindyswart]

Meshell, I know that more than likely I was the exception to the rule, but at diagnosis I was told that since these tumors mostly grow very slowly, that I could go probably for years without having to proceed to  drastic measures. I was diagnosed in April of 11 and within 2 months I noticed more numbness, I fell three more times, my face got more swollen, my hearing was declining, I was just progressing rapidly and my symptoms were increasing. At surgery date, Aug 23,2011- my tumor was three times the size at diagnosis. So, I it was not my imagination. That does not mean that happens for everyone, I guess some of us just grow them more rapidly. I take L-Lysine for the breakouts- since I started a year ago, I have not had one breakout- 1000mg two times a day! When I read some of the challenges that an AN can leave you with, I know that I am blessed. Yes Tinnitus is a $#%@$ and same side deafness is a challenge, but I feel so much better and I have my life back! 

[Meshell201]

Cindyswart - wow, that is something to have grown that large in such a short amount of time, you definetly were not imagining it!  My MRI was done on 8 February, so for my appointment on 11 April, I'll be just over 2 months.  In that time I've developed the facial/tongue numbness...first couple of times, it lasted 2-3 days, but this time it's been 9 days straight numbness.  I agree, I've been all over this site and some of the challenges that others have encountered are heartbreaking and yet, they are on the site helping others.  I guess we never know what or how much we can handle until we are faced with something like this.  I believe I'll find some peace once I talk to the doctor and can hear from him what this is, what his recommendations are, etc.....right now, I  just feel like I'm fumbling around in dark.  Thank you for the info -- I will look into the L-Lysine too!  Take care!!

[Lou]

L lysine is fantastic. It speeds
 the healing process for fatty tissue. I know several people that take it at first twinge of a.cold sore. Stops it dead in its tracks.
Good luck
Lou

[Meshell201]

Thanks Lou, I'll ask my doctor about it!