ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Meshell201 on March 30, 2012, 06:02:59 pm
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Hi - I was wondering if anyone with a small AN has experienced facial numbness prior to treatment -- my AN is small - 5mmx4mmx4mm. I was diagnosed by my local ENT in February and have an appointment at UVA in Charlottesville, VA on 11 April. The numbness has happened twice (lasted 2-3 days each time). Thank you for your responses.
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Hi Meshell
I have had some intermittent facial numbness across temple/upper cheek area but it was determined, in my case, that there was no trigeminal or facial nerve involvement from my AN. The nerve complexes are very close in proximity, so we never say never but it can occur. Please keep us posted on what UVA says as there may be other here that may report the same as you and it could be useful info for others.
Phyl
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Thank you Phyl. Just you telling me that it may not be related puts my mind somewhat at ease. I will let you know what the Doc at UVA tells me. Thanks again!
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Sometimes I get a little tingly feeling and I don't know if it is real or psychosomatic. I will find out more at the meeting in NYC today and report what I have discovered. Millie
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Millie, I have wondered the same thing...ever since February when I was told I had this, everything that I experience I wonder if it's related to the AN! I look forward to reading what you find out! Thank you so much!! - Michelle
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I had some facial numbness off and on after CK treatment. Nothing too bad. Facial numbness is from your trigeminal nerve. My AN is not huge but it was touching my TN nerve which 4 years after CK caused trigeminal neuralgia (not common). My AN probably was always touching my TN nerve even before treatment. I had retrosigmoid 3 weeks ago to relieve my TN pain. My face has numb spots now like my lip and parts of my cheek oh and my tongue all on AN side. I'm hoping this goes away but time will tell. This is not common with AN's but some of us have had trigeminal involvement.
Mindy
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I just had retrosigmoid on what was thought to be an AN. Turned out to be facial schwannoma. I guess these are extremely rare and difficult to diagnose pre-op depending on location. I had some occasional upper eye lid twitching, twitching in the corner of my mouth, rarely dull numbness of face, hearing loss and tinnitus. My surgeon's still did not suspect facial schwannoma. My research reports ~600 total cases in the medical literature.
Anyways, that was my experience.
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Jeremy, one of my 3 tumors I have had due to NF2 was a facial neuroma. Gantz in Iowa City had told me ahead if was a facial one and did end up being severed that he would do a nerve graft at the same time with nerve from by the ear. He did end up having to do this. I never had any numbness pre op. I have had twitching off and on with both kinds of tumors and none were ever near the brainstem. My symptoms pre op was starting to get some drooping just maybe a month before surgery. Mine had grew fast as went from something maybe starting on MRI but couldn't say for sure to 2 cm the next year. I did get some movement back and to look at my profile can see look ok at rest. Not much around the eye but have eye closeure. I do use gel in the eye at night. Rarely need Refresh Liqugel in the day. I do know someone who had a facial neuroma since and Gantz left some tumor so sounds he is going for that way more hopefully.
Cheryl R
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Thank you all for sharing. I'll be sure to talk to the doctor in April about it. I find this site very informative, with real life information and experiences that make so much more sense to me than reading an internet article! Thanks again for all your support. - Michelle
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Hi Michelle
I have some intermittent facial numbness and twitching- However I have two facial nerve neromas,so not sure if that helps you any. Good luck with your follow up. I am scheduled for my first follow up MRI April 30th.
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Hi Meshell,
I had some facial numbness, that was my symptom that lead to discovery of a small AN.They were surprised I was having numbness considering the AN was not that big.
Nancy
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Thanks Nann....from reading the posts, I guess size doesn't matter -- the symptoms seem to be the same for some, but different for others. One person on this site told me that we're a "rare" group...I totally believe that! My AN is small, only 5mm -- I have the fullness in the ear and I have a pressure in my head all the time and occasional light headedness.....now the numbness. I'm hoping that some of it is the stress of waiting almost 2 months to see the specialist! What size was your AN when it was discovered? Thanks again for sharing! - Michelle
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Hi Meshell,
My An was 4mm x 5mm same as yours. It was discovered oct. 2010. I then had Mid Fosa surgery June 2011. But now back on the W@W. They either did not get it all or another one was there they did not see. So back to square one. I still have intermittent facial numbness, occasionally mouth and tongue numbness along with other problems. But now not sure which symptoms are result of surgery or from remaining tumor. Sooo confusing. Back for another MRI the end of April.
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I too have the facial numbness mine was 1 cm at the time of my surgery but the surgeons left 3 mm behind so I am assuming this was not from the surgery but due to what was left...Only advice I can give is research and they are usually slow growing so take your time in deciding and choosing a GREAT team of doctors.
Best Wishes,
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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!!
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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,
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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?
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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
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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!!!
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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!!
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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,
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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,
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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
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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!
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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.
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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
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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! ;D
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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!!
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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
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Thanks Lou, I'll ask my doctor about it!
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For stopping a cold sore.....At Very First Tingle, take a icecube and apply it on and off for about 20 min. The cold sore will not come up. Wouldn't have believed it till I tryed it. An easy cure. :)
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I will definetly give it a try! thanks!!
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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!
Definitely will be here awaiting your posts...I never paid attention to any of the numbness prior to my surgery I think I was in shock and denial for awhile but definitely know I have them now...My prayers and thoughts will be with you and yes any surgery is major but this is a complex surgery that is what I have been told so many times and a rare one as well but it seems like so many great outcomes and more and more people do have them..But we are truly grateful that they are slow growing and benign.
Best Wishes,
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Thank you PJB, I appreciate your prayers and thoughts...mine are with you also. I will post what the doctor tells me next week. Take care!!
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PJB-thank you for reminding us that treatments for our "conditions" are becoming better and better. And Michelle-your words remind me of that poem. "We never know how tall we are until we are called to rise. And then if we are true to plan our statures touch the skies." We are strong because we must be. What good is negative energy going to do us?
Good luck tomorrow. Stay positive.
Thank God for this site and all you guys. And girls.
Millie
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Millie, the poem says it all. A friend of mine always says that God will never give you more than you can bear....I am a believer of that. I agree, there is no room for negative energy, it does nothing for us, so a positive attitude is what we must all have. This site is full of positive energy, thank you all for that! I'll post what I find out today. Thank you all for your well wishes. - Michelle
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After 2 months of researching AN's based on my local ENT's findings, I saw the doctor at UVA today and he doesn’t feel that I have an AN after all. He said there is a tumor at the porus acusticus on the right IAC, but he needs a CT scan to look at the bony detail since the tumor seems to arise from the adjacent temporal bone and the MRI shows that the typical “signal characteristics†are not consistent with an AN. However, the tumor is encroaching the path of the 7th and 8th cranial nerves (that’s why I have symptoms similar to an AN). I’m scheduled to have the CT scan on 30 April and I’ll meet with the doctor right after the CT scan. So, I'm really back to square one right now. On a good note, I like the doctor, he was very nice and took an hour to sit down and discuss the MRI results with me....he "dumbed it down" so that I understood everything that he was talking about -- explaining the images and showing me exactly what he was talking about using a skull. So, that's where I am right now...trying to stay positive.
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Hi Meshell-
I hope this note finds you hanging in there. I have been offline due to sudden open heart surgery for my husband.
I just read the words you posted about staying positive and going forward and God making us strong and thank you so much for those words. I have been feeling down and I have not been in the AN loop/site but your words make me feel not so alone.
I am praying for you and waiting to read of your next experiences with this re-diagnosis. We can do this! Millie
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Millie, I'm so sorry to hear about your husband. I will keep him in my prayers. My father went through a triple by-pass 10 years ago and is doing wonderful! I'm glad my post helped, I know how stressful your husband's surgery is, not only on him but on the family as well. There will be times when he might feel depressed, but tell him to keep that positive attitude, it will get better each and every day! I had my CT scan on 30 April and was diagnosed with a benign meningioma in the auditory canal. The tumor is right up side my 7th and 8th cranial nerves (that's why I'm having the same symptoms as an AN). My doctor wants to watch and wait, even though I'm having facial numbness, etc, he said that watching and waiting to see how it progresses is his recommendation....the meningioma shows some calcification. If symptoms change or increase, he said that I need to contact him, otherwise I go back in 1-year...which seems like a long time to me. Even though I like the doctor, I'm thinking about another opinion, at least for peace of mind. I can only hope and pray that maybe it won't grow, or it will grow slowly and I can push the surgery down the road a bit. So, that's where I'm at right now. Thank you for checking in with me. Since my symptoms are similar to those on this site, I still find the AN site really helpful, so I'll be popping back in from time to time and will look for good news posts on you and your husband. God Speed to you and your husband!! - Michelle
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Meshell-
I have been off the website due to my husband's sudden surgery( quadruple bypass and aortic valve ). He arrived home on the 14th; recovery is slow but we hope sure and we are counting our blessings.
As I return to the site and try to catch up I read that you have written that you have a benign tumor and it is not an acoustic neuroma. Yes, stay on the site as the symptoms are the same and maybe we have more in common than we think. About a month ago, while trying to keep busy weeding (to not think about the AN) I contracted poison ivy or oak and went to a walk-in clinic where I had them take some blood and have it sent to my primary physician since I hadn't had blood drawn in a year. Well, today he told me my alkaline phosaphate level is very high and I have to go for more tests to see which enzymes are elevated-from my bone or from my liver. I "googled" Alk phosphosates and scared myself. Enough of that. Back to ANAUSA.
I am thinking maybe I have your type of growth in my auditory canal.
How are you doing?
Millie
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Millie -- you certainly have had some bad luck...poision on top of everything else and now the Alk phosphosates! Maybe your growth is in the canal like mine. When the local ENT diagnosed me with an AN, and then the specialist disagreed, I asked if he was sure -- he said that it's not uncommon for AN's to be misdiagnosed -- you need to talk to your doctor and/or get another opinion. I had called my doctor last week to get a copy of the CT report. My doctor actually called me again a couple hours ago. It seems that last Thursday he sat down with the neuroradiologist and they have changed the diagnosis from a meningioma to an osteoma (a benign tumor comprised of bony growth -- slow growing just like an AN and meningioma). From what I understand, meningioma's grow on the lining of the brain -- since my tumor is in the internal auditory canal, they are 100% sure (if 100% is possible) that it's an osteoma...so I'm back to Googling!! My doctor did say, that of the two (meningioma vs osteoma), that if you have to have one, osteoma is better because it actually does not grow on the brain like the meningioma. Since the osteoma is in the internal auditory canal and is near the nerves -- that's why I'm having the same symptoms as an AN. I'm still in a watch and wait....the doctor believes that the symptoms I'm having with the facial numbness, etc are related to the osteoma. All in all, I think I'm adjusting to the shock of hearing "brain tumor" and am handling it much better. Enough about me, I sure hope that you meet with your doctor and find out what is going on. I will have to google the AK phosophates and read up on that. Please let me know how you are doing -- I pray that you get some good news!! I look forward to your update. Take care of yourself!! - Michelle
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Hi Meshell PBJ Lou and everyone-
First of all, let me apologize for "disappearing." I am not used to discussion forums and I have a hard time finding topics I have replied/posted to. However, necessity is the mother of invention! I am learning.
Today my husband Tom went to the cardiologist and he is recovering well. Except he is really tired.
On the way home, I got the bloodtests for the elevated alkaline phosphatase my internist ordered. They check to see if the elevated enxymes are coming from the liver or the bone. I am wondering if I have a benign tumor like yours, as mine is also a spindle shape inside my auditory canal (left) and my hearing has really declined in my left ear in the last two months. Can these benign tumors, while not a.n.'s, be removed also?
Thanks and hoping to find my way back to this site!
Hang in there!
Blessings!
Millie
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Hi Meshell PBJ Lou and everyone-
First of all, let me apologize for "disappearing." I am not used to discussion forums and I have a hard time finding topics I have replied/posted to. However, necessity is the mother of invention! I am learning.
Today my husband Tom went to the cardiologist and he is recovering well. Except he is really tired.
On the way home, I got the bloodtests for the elevated alkaline phosphatase my internist ordered. They check to see if the elevated enxymes are coming from the liver or the bone. I am wondering if I have a benign tumor like yours, as mine is also a spindle shape inside my auditory canal (left) and my hearing has really declined in my left ear in the last two months. Can these benign tumors, while not a.n.'s, be removed also?
Thanks and hoping to find my way back to this site!
Hang in there!
Blessings!
Millie
Do not feel bad I have been on here now and then for a couple of years and still having a lot of trouble with the posts and numerous topics way too many for me to keep up and to follow....
Best Wishes,
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Hi Millie,
So glad to hear that your husband is doing well -- his strength will come back, I know it took my Dad quite some time (and encouragement from us to get up and walk around as much as possible). One thing that my Dad had trouble with was that he lost his appetite because he said nothing tasted right -- one doctor told him to eat dill pickles...it would stimulate his taste buds and my Dad tried it and and he believes it actually worked! Once he started eating, his strength increased and he felt so much better! As for the osteoma, from what I understand, the surgery to remove a benign osteoma is basically the same surgery as an AN. I haven't talked to anyone who has the same tumor that I do, but in doing a little research last night, I found a few cases of osteoma's of the internal auditory canal and the surgical approaches used were posterior or a middle fossa and retrosigmoid...sounds like the same surgery used for AN's. The people that had surgery had already lost hearing in the affected ear and were experiencing dibilitating vertigo. Many of those mentioned on these sites are in the watch and wait category. When will you get your test results back? Keep me posted on what you find out. Take care! - Michelle
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Hi everyone!
I have not yet heard about the results of my alkaline phosphosate tests (whether the elevated enzymes are from liver or bone.)
I will post when I do.
In the meantime, I am going to the AN Meeting tonight from 6-7:30 (Local Support Group) in Garden City, LI. Adress is LI Plastic Surgical Group, 999Franklin Ave, Fourth Floor, Garden City NY 11743; Daria Quinones, Local Group Leader, 631 219 0347.
Millie