Some questions...

[Jessica1973]

Hello!    My name is Jessica and back in October I went to see a new doctor as I just moved for a BP check as my prescription recently ran out.  While there I mentioned to him an odd sensation I was feeling in my lower lip and tongue - they were a little numb, like when novacaine wears off after a dental procedure.  Neither of us really thought much of it, and I chalked it up to burning my tongue a few nights before on hot coffee.  As the days went on the numbness spread slowly over parts of the right side of my face - to the point I couldn't close my eye without using my fingers.  This lasted several weeks and finally went away. I had a CT scan of my sinuses - which showed acute sinusitis - he prescribed me antibiotics and when it wasn't getting better, he called a prescription in for prednisone.  I then had a MRI (with and without contrast) that revealed a 3 mm x 2 mm  mass (near the geniculate ganglion -sp?) that he had me see a neurosurgeon & ENT for.  The ENT never called me back to setup the appointment, but I saw the neurosurgeon right away.  He said the mass could be scar tissue, or something worse, but that I would have to have another MRI in 3 months, and he didn't think I needed to see an ENT at this time.  (I just had it done yesterday, and they did an IAC scan of the right side as well - so I'm anxiously awaiting the results)  I thought my facial numbness was easily explained by 'Bell's Palsy' - which I still haven't been diagnosed as having ... but I guess my question is can Bell's Palsy lead to scarring that looks like a mass?  Of course, I have self-diagnosed myself with SO many other things - the internet can be a very bad place (hehe) ...   that I was hoping someone here may be able to shed a little light on my problem.  For some more background on me ... I suffer from chronic headaches - and have for as long as I can remember that no other doctor (before my present doctor) has really given any attention to.  I have horrible sinus infections several times a year, but this year they've become worse.  I've had 4 or so within the past 6 months - and my ears always feel 'stopped up' - for lack of a better word to describe them.  Hopefully I'll get my results back soon and can update this post with great news ... last time they made me wait 9 days and when I got the report it scared the crap out of me ... there was a long list of 'possible' causes and almost all of them meant cancer.    Thanks for taking the time to read this ... and I would appreciate any information/experience that anyone would like to share.  Have a great day!  JR   

[matti]

The most significant symptoms I had were facial numbness, especially gums and lip, but the most annoying was the burnt tongue feeling. Sometimes I felt like I had cotton stuck to my tongue as well. These are the symptoms that lead me to the doctor and I was diagnosed with everything from MS to Trigeminal neuralgia and after a 1 1/2 years of misdiagosis an MRI showed a 3.5cm AN.

I don't know if Bells Palsy can lead to scarring. Do you have sinus polyps?

Keeping my fingers crossed that you hear good news!! Keep us posted

hugs,
Cheryl

[Joef]

yep.. thats how I started .. at the dentist ...about and ended up taking to my GP about my "fullness" water in my ear I could not clear ... I was lucky... he took a quick look at me.. and sent me for an MRI w/contrast ... I was only his 2nd pataint with a AN ... 

[Jessica1973]

Did the numbness last longer than the 'typical' few weeks like with Bell's Palsy?  I know the only thing I can do is wait to see what the new MRI has to say - but I am getting very impatient.  To have a neurosurgeon tell you he has no clue what is in your hear and we have to give it a few months to see if it's growing sort of has me freaked out and on edge for the past 3 months.  Some days I feel like I'm going crazy ... and the dreams I've been having ... Discovery Health is NOT the best program to watch when you have undiagnosed symptoms. 

Thank you both for your comments... I greatly appreciate it!

~JR~ 

[Obita]

Hi Jessica:

Darn it.  The waiting is tough.

My facial trouble was only twitching.  It felt like I had bugs under my skin.

I hope you get some news SOON.  Kathy

[Battyp]

Bell's Palsy can last more than just a couple of weeks.  It's a viral thing that can last 6 mos or more. 
If you're not getting the answers you want or that are not confirmed please get a second opinion!  I waited because I didn't know any better and ended up losing the hearing on my an side before I was diagnosed. 

M

[Jessica1973]

Well...today is Sunday and the place I had the MRI done called to tell me I HAD to come in for an additional scan tomorrow. They left me a message (of all things to do to someone) and I called back to find out what was wrong. She told me they need to validate what it is they saw with another scan ... and when she heard me getting upset she changed the s tory - saying they think the wrong test was ordered this last time. I don't believe that because the first time I was there they held up my appointment to get in touch with my doctor to verify if I should have contrast or not ... if they thought this order was wrong I truly believe they would've done the same. The worst part - the first time I went I had the regular MRI and freaked out so this last time I had to have the open one. So they know how much I dread this procedure - so for what they are claiming as mistake now makes me have to go through it again. I am so scared I don't know what to do right now. I am calling my doctor first thing tomorrow because he HAS to find out what they found (if anything) or else I'm going to go crazy!

[nancyann]

   Jessica:  Sorry this is happening to you;

   sounds like someone needs to poop or get off the pot.
   Don't know where you live or where you're having the MRI's,
   but a 'preliminary' diagnosis would at least be something.

   Hang in there girlfriend, the MRI should have been done with contrast in the first place;
   I know MRI's are a PIA;
   Definitely get in touch with your ENT doc & find out what's going on.

   Keep a peaceful heart during this roller coaster episode,    Nancy

[flier58]

Hi Jessica,
I am keeping you in my thougts and prayers.  please try to stay calm (I know easier said than done). HUG!
Flier 58

[Sue]

Yeah Jessica, I'm also keeping you in my thoughts.  I have the burned tongue thing too. It varies from day to day in intensity. Today it is pretty strong and I have the salty taste that is quite prominent too.  This burn feeling is actually all on the inside of the left side of my mouth - my AN side.  It's very annoying. And then it just goes from there to other symptoms of my AN that was diagnosed last March.  I hope you get answers soon and that everything will be okay with you.  This is a great place for help, support, and comfort.  And you can vent all you want on here too!!  Many people have.  Take care.

Sue in Vancouver

[Dealy]

Jessica 1973- Saw your post this morn about MRI scans. I kinda am in the same boat. My story to relate with you: I had surgery 18 years ago for a 1.5CM-totally removed no problems. I got another AN on right side which was treated with radiation this past summer. That makes me an NF2. In my last scan radiologist said he seen something on the left side but did not think this could be recurrent tumor. Neurologist where I had radiation says yes we see enhancement but cannot tell you what that is until next MRI which is my yearly in later part of June. The odd thing is-either I am paranoid or my symptoms indicate a regrowth. I developed severe stuffy nose and congestion last fall-also sounds like I am talking through my nose-it always feels stuffed. So starting January 3rd of this year (I keep a journal and log of symptoms etc.) my left ear starts to ache inside off and on and feels full alot. Not getting an answer from no one I sent last 3 MRI-S from past year to surgeon who did my surgery 18 years ago-see if I can get a 2nd opinion and input. So I know how you feel. Is it not bad enough I am dealing with one tumor-now another may reappear. Hope you get a positive answer soon. Thanks Ron.

[Jessica1973]

Well, I called my doctor's office first thing this morning - the nurse called me back a few minutes ago and was absolutely NO help whatsoever to me.  I can see finding a new GP really soon in my future.  Well, the dreaded third MRI is scheduled in a couple of hours ... God I just want someone to find something, ANYTHING, wrong with me so that at least all the worrying about the unknown can end.   

I just want to thank you all for all of your kind words and good thoughts you've been sending my way.  I know I'm new here and don't really know any of you, but I hope you know how much I appreciate everything.

It's just so comforting to know that there are people that know what I'm going through and that I am not crazy!  (I mean, I wish none of would have to experience this, but I am glad I am not the only one)

~Jess~

[Battyp]

Jessica hope your MRI went well today.  Let us know what happens.

[Patti UT]

Jess,
  What a scary thing for you. I'm sorry your having to go through this. It is  a terrible thing that darn AN. I'm praying it's not that or something else. I wonder if sinusitus so often could cause scaring that looks like a mass.  I do know from experience that the MRI's can be misdiagnosed. They told me my AN was a blood clot in my brain, put me through an angiogram to find notheing and sent me away. 4 year later, I got the correct diagnosis of a 2cm AN. It had grown 40% in the 4 years and taken most of my hearing with it.  Wishing good thoughts, praying for a better explainaton for you. Keep us posted.

Patti UT

[Jessica1973]

Well, the MRI was horrible.  They knew I needed the open one but yet they scheduled me for the closed one without telling me.  When I got there and found out I started crying and shaking ... I felt so bad for the poor guy who was doing my study.  He shortened it by looking at my original scans and narrowing it down to on only the scans they really need.  (seems they do many cross sections that don't apply for some reason)  He promised me 15 minutes, so I promised him I would do it.  We both kept our word ... but it wasn't easy.  From my neck down I trembled like a leaf and tears streamed from my eyes almost the whole time ... but it's over, for now.  Let's just hope they have what they need and I can start to deal with whatever may be inside me or just move on and put this all behind me as a bad dream.  I'll keep you updated... last time I waited 9 days to get the report - *fingers crossed* it won't take that long this time.

~Jess~