ANA Discussion Forum
General Category => Inquiries => Topic started by: Jessica1973 on January 20, 2007, 11:03:15 am
-
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
-
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
-
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 ...
-
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~
-
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
-
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
-
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!
-
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
-
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
-
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
-
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.
-
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~
-
Jessica hope your MRI went well today. Let us know what happens.
-
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
-
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~
-
Hi Jess and welcome.
I'm sorry to hear you are having such a tough time... let me ask you a few questions, ok?
1. What city/area are you located?
2. Are the doctors you are working with affilliated with a major acute care facility/hospital (especially teaching hospital)?
3. when you left the MRI center yesterday, did you ask for a copy of your films and request that you be copied on the written report (you should have these on hand to bring to any of your upcoming dr appts)?
From what you share, I can see you are having a tough time and hoping you are feeling better soon. I'm sure the report (final) will help give you peace of mind that you seek. If it is scar tissue (from what source, I have no clue... typically from a surgical procedure but I'm not a dr and not sure if other issues, other than a surgical procedure, can form scar tissue... maybe someone else can answer that...) and not an AN, I will be curious to see if that is the case so you can finally get the answers you seek.
Wishing you well and hang in there!
Phyl
-
Hi!
I'm in Northern Virginia ... the neurosurgeon I went to after the first MRI back in October said scar tissue was a possibility, but of course that is why I had to go back 3 months later to really try to verify what it is. I'm not sure if what I had in October was Bell's Palsy (or not) but I don't believe that ends up causing scar tissue ... but I'm no doctor either. I guess it could be a million things - I just want it to be something so this can move on. I do have copies of all my films 1 CT Scan - 3 MRI's ... besides the neurosurgeon - I do have to make an appointment w/an ENT and I do plan on taking the films with me. (quite honestly because I don't want anymore MRI's :))
-
Well ... 2 MRI's again later - they now say they can't see the 'mass' they could see the other 2 times. Now, I have to wait another 3 months and go back for another one. :(
Oh well, maybe this is all going to be a distant memory for me soon ... I do have an ENT appointment on Moday - they say I have some terrible sinus issues going on as well - YAY for me! :| Anyway - hopefully the ENT can fix up my sinuses so that is one less worry I have.
Has anyone else ever been told they had a 'mass' and then told they can't see it, but had to go back some time later? Does it normally reappear or ...?? I guess I am more concerned they I care to admit ... my follow-up MRI was done in the open unit and the pictures were lousy. They called me back in two days later - but never told me I'd be in the closed one ... I freaked so the radiologist cut my scan time in under 15 minutes ... I worry that maybe it was missed due to that?
I guess there really are no answers to any of my concerns until I go back in 3 months ...
Thank you all for your help and I wish you all the best! :)
Jessica
-
Sorry to hear of your panic
You need to reconsider your approach in the MRIs in future
ie - stay still
So, How ?
Either a) get into some deep meditation techniques
where you can lie for 30mins with your eyes shut
(so you wont really be aware of the confined space
I think its the claustraphobia thats getting to you)
or B)
look a sedation option that will calm you to the point
where a gentle snooze is an easy option
It is important that you are still for the machine to work,
and if you get a phobia about it - it may give you
harder choices in the future
Sorry to sound like your mum !
Best regards
Tony
-
My daughter has been in the hospital for 6 weeks following her AN tumor being removed. She is having trouble swallowing and I was wondering if anyone else has had that problem. Her tumor was huge around a 10cm and she has had one complication after another. I haven't noticed anyone else complaining about a peg tube or swallowing problems.
-
Yep - swallowing probems can be with with large ANs ... are you sure 10cm is correct ??!! .. if that is correct, I would surpised if NOT getting vision or swallowing problems ..
Hey Crazycat .. you had a feeding tube for a while right?
-
Hi, McKLARKE,
I had 6x3x3 cm tumor removed 18 years ago and had swallowing problems for 3 months afterwards. It took me close to two hours to eat half a plate of ravioli in the hospital but it progressively got better and dissapeared after 3 months. I had never been evaluated for swallowing difficulties but maybe it is for the better because the last thing I needed in addition to all my difficulties is a feeding tube. I was really angry at nurses who removed the tray away from me half an hour after they put it in front of me assuming that I did not want to eat. I could not talk very well because I was hoarse and in pain so I could not communicate that I needed more time.
How old is your daughter? 10 cm size tumor seems too large to me. Are you sure?
Eve
-
The neuro surgeon said it was the size of a tangerine. It was huge. She has been in the hospital 6 weeks. She had CSF leaking twice and they had to go back into the huge scar on the side of her head twice to repair the leaking. She had a lumbar drain and then a shunt put into her back leading to her stomach. She's had a staff infection and meningitis. She had pneumonia and had a blood clot in her right lung which she had to have a screen inserted so if the clot traveled it would be stopped before it reached her heart. She is finally going home after 6 weeks with a peg tube in her stomach. She talks only on one side and can only swallow nectar juice. She is 25 yrs old and newly married last April. A few more months and she would have been dead. She was having terrible headaches and as she is deaf in the ear the tumor was on she didn't have hearing loss which I read is a key to the discovery of acoustic neuroma. I really needed her to hear of other people who had trouble swallowing because this is what is getting her down. All of her nerves on the right side were not cut thanks to a wonderful surgeon and he said everything will come back.
-
Hi McKlarke,
It sound like your daughter has had a very rough time to say the least. I am very aware of all the problems that come with these large tumors. My daughter, Chelsea, also had a large AN. It was 6cm, said to be the size of a lemon. I like how things are measured by food. Anyway, she had many complications after her surgery. One was the loss of her swallowing reflex and had a paralyzed right vocal cord. She had a feeding tube inserted through her nose just 2 days after surgery on June 18 and ended up with a peg tube which was inserted the end of July. She was in the hospital from June 16- Sept. 16, 2006 and went home with the peg tube. She has a wonderful head and neck surgeon and in Oct. when she went in for a swallow study, which she failed, he told her to go out and try to eat something soft like pasta and if she started choking then don't eat anymore of that type of food and try something else to see what she could eat. She started with mac & cheese then lasagna. She ate very slowly and focused on what she was doing. She was also told to try eating with her head slightly bent forward with her chin towards her chest. It worked and after 99 days of not eating anything by mouth we were thrilled. For a couple of months she had to really concentrate on what she was doing so she wouldn't choke. She had 6 weeks, 5 days a week, of radiation from late Oct. through mid Dec. They had her keep the peg tube during this process. After radiation was over they removed the tube. She has been doing fine with her swallowing. She still needs to have another surgery before June on the vocal cord at which point we are hoping that she won't need to have another peg tube. Where was your daughter treated and what do her doctors say about her swallowing reflex?
Take care....Michelle
-
Tony - No worries about sounding like my mum ... LOL! I drove my self to the appointment - as I thought I was going back in to the open MRI as I did two days before. The lady forgot to mention to me I would be in the closed one, so they couldn't give me anything to help calm me while I was there. Since I have to go back yet again in 3 months - I will certainly get some pills (prescribed :)) to help me through.
Thanks for the advice though ... :)
J~
-
Hi Chelsmom,
My daughter had an acoustic neuroma tumor. She had the feeding tube down her nose first and then came home yesterday with the peg tube. They told her not to eat anything but she could get down a thick nectare juice in the swallow test but that was it. We are going to rehab for speech and physical therapy ( which she really doesn't need). Have you heard of Vitastim? They put these low dose patch things on your throat and stimulate the muscles and help with swallowing. Unfortunately, they do not have scientific studies to show their success rate but the studies they have done on their own were really remarkable. Our ent doctor said it wouldn't hurt her so we may give it a try if the speech therapy doesnt work. How old is Chelsea? My daughter Meagan is 25 and just got married last April. It was a shock for her and us when they found this tumor. She has a very positive attitude and she wanted me to check to see if anyone else had a swallowing problem.
Thank you for sharing because it always helps to know of other people who have had this and got through it or people who are going through it right now.
Maureen