ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Soundy on May 03, 2010, 06:00:05 pm
-
For past month or so I have had an array of facial abnormalities that I have kept under wraps until I sorted them out … I thought they would go away but it isn’t happening ..so sharing in hopes someone has any ideas
I had some mild paralysis right after surgery and weakness that still persists but unless people are looking for it can’t see it unless I am real tired as fatiguge increases it ... face does what it should aside from a droop of right eye and mouth that doesn't smile equally when I am tired ... tiredness seems to exasperate any if not all symptoms I have from swaggering pirate walk , headaches , dry eyes and metal mouth
for past 4-5 weeks I have had alot of facial twitching to right side of face (AN side ) ...corner of mouth , cheek and eye ... and my eye is either real dry (no biggy ,I have drops and goop ) or it runs and I look like I am crying out one side of my face ... metal taste in mouth is stronger than it had been ... all these things have occurred since surgery but had ( I guess for lack of better words ) settled out ... I am now seeing a return of them and with it being 34 months out I find this unsettling …and have ignored them as best I could …ostrich in the sand approach … if I don’t acknowledge something it doesn’t exist
but for past 3 days I have had the sensation that the right side of my face from cheekbone down to lower jawbone is wet ... I keep wiping hand across my face , checking and I know after first day that it is not wet but check anyway... Do you know the feeling you get when an IV is started and fluid starts going in ... that cool wet feeling that feels like it is on the outside when in reality it is on the inside ??? that is how this feels ...cool and wet ...
Also over last few days , though I guess it would fall into the hearing category , when I turn my head , stand or sit , the tinnitus teeeeeeeeeeeeeeee in my deaf ear turns up then immediately back down …that sounds confusing but compare it to turning the volume knob on a radio (if you can find one with a knob) quickly up then right back down to the same level the volume started at …this seems to have just do with my movement and may not be tied in to rest of what is going on
I saw my doctor this morning and he is worried about either swelling , fluid or re-growth … I am hoping it has to do with weather changes … don’t want it to be anything else … he wants an MRI but insurance won’t pay for one unless it is an emergency … and it isn’t at this point …
after him talking to a neurosurgeon and a rheumy in Nashville , they feel it may be sinus fluid build up , allergy or the facial nerve is just damaged and this is normal for a damaged facial nerve …
I have not been sneezing and have no drainage and I am breathing fine …no stopped up anything that I can detect…I have been put on steroids again and an antihistamine and will go back in 14 days to report if things are the same worse or better … then we will talk about an “emergency†if there is no improvement
I am afraid of return of AN …it is unlikely but not unheard of according to neurosurgeon that was consulted …my surgeon right after surgery , would not say he got 100% of tumor saying a sand size piece could have gone undetected even though a thorough search found no remaining tumor tissue … he said eh got all visible tumor and none has been seen on any post-op MRIs … I guess all I can do is hang tight for next few weeks and hope for best … just had to post something as fear is rising … I have a sick feeling in the pit of my stomach and it has grown all day
Thoughts , input , ideas , experiences …
-
Soundy ~
I'm sorry to learn of these symptoms you're experiencing and I can easily understand why you're building up anxiety. Like you, I'm an expert denier, which is how my AN got to be almost 5 cm before being diagnosed. Fortunately, my procrastination didn't cause any serious problems, but it could have, and I get that, now.
Although I haven't suffered the same post-op symptoms that you're experiencing, I'm very aware of any changes in my face, taste, etc. We all know that whether one undergoes surgery or radiation (or both, in my case), re-growth is always the '800 pound gorilla in the middle of the room', to use a popular idiom. Put another way, post-op/radiation patients will always be concerned about the possibility of a re-growth and the thought of another (or initial) surgery. I am - and it's clear that you are, too. I think we all are. I also believe this fear is perfectly normal. Unfortunately, I cannot offer some ingenious way of dealing with it that doesn't include some anxiety. I think you're handling this in a realistic, practical way and of course, I hope and will pray that your symptoms are unrelated to your AN and that it has, indeed, been vanquished forever.
Jim
-
Sorry you're having all these problems! My case is completely different than yours (smaller AN, recently treated with Cyberknife). But you're the only other person I've ever heard of who has tinnitus that changes when you move. When I move my head fast to the left, or somedays even when I walk or chew, I "hear" a whistling noise. The docs don't know what it is . . .
It's not a happy day when you have symptoms/problems that can't be explained. Will keep you in my prayers!
-
Hi Soundy:
Sorry that you are going through this. I am also having changing symptoms - also have that tinnitus volume go up/down when I move my head suddenly but this has been going on for years. I have MRIs every three years now (one is due end of this year) and I am feeling increasing tightness in my face and wondering a bit as well that there may be regrowth. But, I have gone through all this type of anxiety in the past as well, and then a follow up MRI showed all clear. So, I just wanted to let you know that having had strange symptoms in the past and then a clear MRI, I had worried for naught. All the best!
Cecile
-
Jim ... I am trying to stop being an expert denier , but have alot going on and some part of me decided denying this would be one less thing to worry about ... doesn't work because you can't really lie to yourself ... you listen in on your own conversations
Thanks for everyones input ... giving it the course of the medicine , then proceed to next step which is an MRI ...hope I am worrying about nothing ...don't need anything else going on right now
-
I think I just had a hammer to the head moment ... here and in the community and on another board I belong to ...
an AHA !!! moment if you will
-
:-[ ... see how brilliant I am ... I said that and ran off trying to explain myself ...in the wrong place ...not sure this is the right place either ...but seeing this is where it started putting it here instead of in Cognitive and Emotional Issues
Jim ... I am trying to stop being an expert denier , but have alot going on and some part of me decided denying this would be one less thing to worry about ... doesn't work because you can't really lie to yourself ... you listen in on your own conversations
Thanks for everyones input ... giving it the course of the medicine , then proceed to next step which is an MRI ...hope I am worrying about nothing ...don't need anything else going on right now
I am thinking that I am just in a phase of depression and worry again ... I don't feel depressed , sad yes but not depressed ... but I am no expert and have failed to see it before ...
My Mom is suffering from breast , liver and pancreatic cancer , my dad has lung cancer , one of the twins told me today that he and his wife are filing for divorce …have seen it coming for a long time but still kinda a shock … my oldest son but always my baby is in Iraq … due to insurance changes and lack of coverage we are racking up bills ... I skipped December’s MRI because I just didn't want another bill ... money is tight like it has never been ... the girls are good but expensive ...kids are ....but I will do without to make sure they don't ...
I am running headlong at a wall like I do ever year at this time… end of school things , lining up day camp , getting the girls summer plans that need advance planning , planned … and have a ton of extra personal stuff on me to deal with
I wonder if this all has anything to do with increase in my facial symptoms … stress …
I keep seeing bits and pieces of these things pop up in other threads and went AHA !!! A link … all of these things are on my mind even if I am not actively thinking about them and pop out when something triggers them … like the mothers day post in community
I came off the antidepressants doctor put me on because they made me feel ill jittery … may be tine to try something else … gonna print him a few post …mine and those leading up to mine … let him see what he makes of my theory … I think I am on track with this …
I have become the best expert denier and tricked myself on some level into thinking things were fine but another level knows better …
Here’s to moving forward … see if taking care of mind helps body …
I sure hope that if I ever appear as nuts to people around me , as I probably seem here sometimes , that they get out that giant butterfly net and haul me in
-
Soundy, hon, I hear you on the stress that accompanies this time of year, I'm in the midst of it too. But if you feel you need to see your doctor about it, I think it is imperative for you to go. Even if one antidepressant does not work for you, there are many others that you and your doctor can explore. For instance, if Prozac doesn't do it for you, Paxil or Effexor might, those are two that are anti-anxiety as well as anti-depressant. Also Wellbutrin often works well for women who don't tolerate SSRIs, with the added benefit of not causing weight gain like the SSRIs sometimes do.
And don't forget that venting here helps us cope better with the outside world, so that the butterfly nets may not be necessary after all.
So keep on venting, go see your doc and continue to let us know how you are thinking and feeling.
Take care and God bless,
Sara
-
I didn't mean to say that stress is the whole cause of facial issues going on but that it may exasperate the symptoms ... I have too much that is out of going on that is out of my control ... I do know when I am tired physically that the problems are worse ... may be some of the mental exhaustion is playing into it all as well ... don't know if that clarified last post or not ... didn't sleep much and have a headache and twitchy eye ...
I keep my PCP informed of what is going on ...both with my body and my head ... and trust him to help me get through stuff and most of the time he is a big help...until we get different insurance , unless it is an emergency or one of my kids in need of one , there is no such thing as specialists for anything right now ... and I honestly don't think I am depressed ...just very stressed out ... have rolled around in both and kinda know their feel ...
just writing out things and letting others see and maybe point out things I don't always see in what I write helps ... Jim is very good at seeing things under the words that I don't always realize ... I guess I can't stand back far enough to see myself at times ...
-
Soundy, I read your message late last night so certainly might have misinterpreted. This is a great place to vent and think things through, that's for sure.
Sara
-
I don't think you misinterpreted what I wrote ... I thought my post kinda made it sound as if I thought my facial issues were all due to stress and just all the stuff going on ...so tried to clarify a little ... but with me that usually means stirring up muddy water ...
had a 2nd grader wink at me in the hall and when he got to class he told his teacher I had winked at him so he winked back ... she told me it made his day ... kid was happy someone winked at him so we are leaving it alone ;) ... just goes to show that all twitches are not bad
-
!5 years post op experience.
Accustic neuroma X 2
Please be Mentally slow on this recovery. This all takes time. You have to get use to yourself again. Your body is reacting differently now. YOUR HEAD HAS BEEN CUT OPEN..HUMAN HANDS HAVE TOUCHED YOUR BRAIN. Recovery is meant to be slow. Your brain has to catch up. Please have patience. This has happened for a reason. It has changed my life forever. Good luck, Gods Blessings.
-
Still having some facial twitches ... especially from cheek bone along jaw bone to tip of chin ...swallowing feels funny ...it always feels like I have a lump in my throat ... the twitches along this path are more like long pulls ... think of when you are working out and from sitting on floor with legs stretched out in front of you and you reach for your toes and stretch out your back and hold that stretch ... that is what they are like ... instead of just twitching the muscle contracts and stays contracted for up to 10 seconds ... not a long time but it is not just twitch and go as usual ... I have choked a few times on crunchy stuff so am avoiding chips and such ... doctor won't be in office until Thursday but time to go further in finding out what is going on
the twitching around eye , corner of my mouth and in cheek are just twitch and go twitches ...and mostly just irritating ... but worry they will progress to the long pulls the muscles on right side of my face are actually getting sore and tired ... like they have had a work out ...
-
I have many of the sensations you describe. I have twitching and facial cramping as well as the wet sensation (although mine is on the corner of my mouth and chin). I believe mine are caused from irritation of my Trigeminal nerve. The wet sensation was the first symptom I had of my tumor, 6-12 months before I developed any other symptoms. I have it off and on still 4 years after my surgery.
Although I think you should mention your symptoms to your neurosurgeon so they can take an extra careful look at your annual MRI, I also notice that my symptoms really fluctuate with weather, stress, fatigue, exposure to bright sunlight, and many other things.
This is probably all part of the lovely recovery process that never seems to end!
Good luck!
Amy
-
I have something going on that I don't think is AN related and may not be lupus related ... when we went to school to get report cards yesterday the nurse said I needed a higher dose of my water pill because my face and chin look fat ... and they do ...but the day of that last post I rubbed my neck cause the lump in throat feeling was stronger and I have a well formed lump just under point of chin ... it is about an inch across and tender ... it has not gotten bigger since I found it but is sore now without being touched and without swallowing ... doctor will be in office tomorrow ... didn't want to see his partner yesterday so waiting ... will be on his door step at 8:30 when they open ... my neck and shoulders and most joints are aching ... I hope it is just a lupus symptom and not something new ... I am hoping the lump is just a lymph node ...
face still twitchy and eye dry as all get out ... been massaging face and it helps and also applying cold rags that I wet and pop in freezer until they just get kinda crunchy but not totally frozen ...
won't get MRI that was scheduled in Dec until we win the lottery or rob a bank or invent an emergency to get an MRI through trickery :D ... but promised I would not resort to a life of crime ... insurance will not cover it as maintenance ... gotta come up with it all and at the moment we are pretty much running check to check ... have to pay for fuel to get hay in before we put back for MRI ... without hay cows starve come winter and there goes the farm which supplements paycheck and helps pay for extras like MRIs ,BAHA (just a dream) and other things the insurance decide are luxuries
ooooooohhhhhhhhhhmmmmmmmmmmmmmm.... I am kinda mad this morning ... gonna check out Book Club and see if discussion has begun ...remove myself from things I have no control over for a minute or two
-
lump under chin just lymph node with hoindication of anything that shouldn't be there ...just alot of fluid ...doctor thinks may have been allergic reactions , so it may be tied in with lupus sun reaction but not sure ... no infections , no cancer markers which is all good ...
face still twitchy but it isn't as bad or I am just getting used to it ...
-
Face still a little twitchy ... I kinda think that my face will always have the little twitches and the funny half numb feeling that runs across cheek bone and up into scalp along scar ... and that is fine ... my smile is almost normal ... sometime both sides of mouth are even sometimes they aren't ... face is just irritating , not a medical necessity as the headaches are
started on neurontin and it is just OK ... not the lyrica that worked good ...and my whole face feels like it is drooping even though it isn't ...the neurontin is making me hungover feeling and my head feels disjointed for lack of a better word ...
-
Hi Soundy,
When I was on the neurontin I was extremely spacey and the longer I was on it the worst I got. It did nothing for my face pain or twitches, in fact I went from twitches to full blown hemi-facial spasms. At times it feels like there is a huge rubber band implanted at the tip of nose and someone is pull the band with all of their might. I feel like my face is being ripped apart. My eye sight went all weird after I had a bad day with headaches and actually I do not think the neurontin really helped with the headaches. I know my liver function went all funky and I'm really happy that after close to two years I made the decision to wean myself off of the drug. Mind you I did pack on 30 unwanted pounds, I've managed to loose 10 with 20 more to go.
I take tramacet for the headaches and the amount I take varies from day to day. The last 2 weeks or so have been a nightmare battling headaches and facial pain. The weather has been so unstable, for me weather is contributing factor. I find if I do not sleep well the night before, like last night my day goes from bad to worse. I've been trying to get over to the post office to send a small package to a friend of mine but I have been unsuccessful because the headaches and dizziness wipe me out.
I read your other post about your battles with your insurance company and I am disheartened. Capt Deb's battles with her former Dr another heart breaking story. It boggles my mind when I think about what you two have been through. I wish I had oodles of money (I might tonight if I win the Lotto Max of $50 million) so I could get you and Capt Deb the care you so desperately need and deserve.
Hang in there,
Anne Marie
-
One other thought for you Soundy - most drug companies have programs for patients who can't afford their medications. My dad got some very expensive heart medication that way. It may be worth looking into.
Sara
-
I may have slept through 3-4 dozen nights since surgery naturally and not too many more throguh drugs to sleep..I just don't sleep right ... I sleep maybe 2 hours and I am up around midnight ...I will lay there staring at ceiling for a while ...if I don't dose off I get up and read , watch TV , clean the bathroom (only room I can clean and not disturb people ) or cook bad things like muffins , brownies and cookies :) ... usually around 3 or so I will be asleep again and then alarm sounds at 5 ...Bo gets up and started and wakes me fully around 5:45 if I didn't come alive at 5 ...then I am draggy til around 9 or so when my body catches up with the fact that I am up and moving ...
I try my best not to lay down or even sit during the day or I am going to go to sleep... if I have had a headache or I'm hurting from leg ,hip or back pain , I am not going to nap I am going to crash ...last Saturday after being on our town square from 8am - 2pm with annual Taste of Giles County I came in and lay down around 3:30 to rest before starting dinner ... my husband woke me up around 2 in the morning ...I thought it may have been 5 or 6 pm and got up thinking time to cook dinner and when I saw it dark out looked at clock and got mad at him for not getting me up ... he had fed the girls but said he couldn't get me awake so just left me ...I took a shower and went right back to sleep and didn't get up until about noon Sunday ... that's a crash ...
I have been on several sleep aids since surgery and Prozac and Xanex to decrease anxiety but I ended up groggy or jittery and so have just learned to live with my weird sleep patterns … can’t wait for school to start back … the structure of getting girls up and out and me going in on my days are good me ..just can’t get into a routine since summer has hit
when I have headaches that are beyond Tylenol my face is worse and I end up taking hydrocodone ... and have landed in ER when pain induces vomiting and that makes more pain that makes more vomit and I can't stop the train and get off ... I think that the worsened facial issues are due to the headache pain , stress and just being tired ... although not bad as in most people don't notice other than I don't smile much anymore (seems like to much of an effort) the face bothers me ... Not the little bit of a crooked smile , but the twitch around eye that makes words jump as I read … and my face is tired from the twitch that is mostly like a rippling under the skin with the pulling at corner of mouth , around side and tip of nose and the corner of my eye …it is tired like a leg muscle is tired after a long walk …
Neurontuin isn’t gonna work long …yesterday was a boost day bringing me up to full dose and it took me about 4 hours to get out of my house …got to town and it took about 4 hours to pay the gas bill , electric bill , mortgage on property we had to buy last year to gain control of creek (some days I wish we had sold the whole herd ) Home Depot bill and then we got groceries … I had told the kids we would go eat at the Chinese place but couldn’t bring myself to go in and sit eating …so we drove through Mc Donald’s and grab stuff and they ate while I drove home …the tasks and eating should have taken 2 hours at most … but I can’t think and I am draggy …my feet and legs feel heavy … I just don’t function well on it ...and my face feels even less my own
the facial sensations are a bit different and the way you described it as feeling like a rubber band being pulled is better than me saying mine felt droopy … it does feel like something is holding my face at cheek bone pulling up and pulling the side of my face down at jaw line … like someone is always touching my face …right now I am clenching teeth to keep my lip from jumping and I can feel my neck tightening from it and have to consciously make self stop clenching …or I will get a headache …but with the neurontin I am having headaches that I can tolerate or treat with Tylenol so for now it will have to do …
When we sell calves next time I am going to get the check before my husband has a chance and take the money from the calf that brings the least …usually that is about $400 … and then work out a dosage that is not too overly padded on the lyrica …while insurance doesn’t pay drug store anything on lyrica they do run a discount where you are charged by the month not the number of pills …found this out accidentally when filling antibiotics when the girls had strep throat …Hannah’s dose was bigger , but hers cost the same as Sarah’s and I asked why … my true dose of lyrica will cost the same as let’s say 3 times the dose …so if doctor writes the Rx for 3 times the dose I take which is still within reason and not the top dosage I pay for it and it will last me 3 month …I hate playing these games but you got to do what you got to do …wish I had known this sooner …
-
One other thought for you Soundy - most drug companies have programs for patients who can't afford their medications. My dad got some very expensive heart medication that way. It may be worth looking into.
Sara
I have been trying to get assistance with lyrica ... so far no good but will continue to try ... or find some foundation that will help ... Mom has been off cancer drugs because she couldn't pay for them but the Carnegie Cancer Foundation informed her that they will give them to her free for 5 years ... one bottle is $380 a month ...there is something out there ..I just have to find it
Pfizer has a Care Connection program that I qualify under income but not under hardship and since I technically have prescription coverage even if it doesn't pay for lyrica they denied me
-
assistance program
http://www.pfizerhelpfulanswers.com/pages/Programs/programdetails.aspx?p=2
Form
http://www.pfizerhelpfulanswers.com/files/C2C_ENGLISH.PDF
we are about $9000 under their income line , but with insurance even though it doesn't pay for lyrica , I have to prove hardship ... I am thinking that with being that far under the income line that it will go through
-
form off and hoping it goes through and I can get back on lyrica ...
my face is more twitchy and my eye isn't closing all the way at night ... going to have to start patching and gooping it again I guess ...it still hurts from being partly open while I was sleeping last night ... have been getting by with just putting drops in when I get up and several times a day ...I dribble a little bit out corner of mouth and just use a straw when I can ...need to buy a pack for here at te house ... metal mouth which has been a constant since surgery is still with me and after 3 years just kinda used to it
to have few facial issues after the first few month post surgery it is just disheartening to be having these now and not able to rally investigate it due to crummy insurance and not enough money ...husband offered to have more added to our equity loan that we took out to pay for non covered surgery cost and to finish the last two room in the house but I told him I would wait it out ... after running insurance , several neuros we ( doctor and myself ) contacted last week want a bunch of money up front ... money we don't have ...if I can get headaches back under control I can live with the twitches
-
face kinda funny feeling after first massage session yesterday ... my doctor called around and rounded up a month of lyrica in samples and still waiting to hear from Pfizer ... my face looks fine and everything works 99% of the time ... do dribble sometimes and still twitching and have the numb feeling along cheek and jaw bone ... today though face just feels funny ...when massage was in session it felt like when she was touching neck that someone was touching my face ...
what is the word I am looking for that states with an s ... when I yawn my eye on AN side closes ... synkesis ??? ... that's not right and trying to remember for last few minutes and not read back to find it >:( ... it frustrates me that I can't remember something that I know I know .... grrrrrrrrrrr
anyway ... I am wondering if the sensation of being touched on face when touch is really to side of head and neck if it something akin to the S word I can't find in my storage banks ... at least I now it starts with an S ...some days I don't get that far with my thinking ;D ...just thinking it may be in same family of symptoms ... confused nerves
-
Soundy, synkinesis is the word but I have never heard if it also makes one have the touch sensation problem as you described. It sure seems people have various odd ways of having nerve feeling or odd sensations past surgery and what is happening. I don't know that answer and hope you hear more if someone has an idea. Cheryl R
-
My tinnitus also changes when I move my head. If I turn my head toward the AN side, I get an electronic buzz. The farther I turn it, the louder it gets. Normally, my tinnitus is more like an open microphone...just the sound of air flowing...that is louder at times. My tinnitus works like white noise in that it drowns out the sounds that I hear in my non-AN ear. It makes it difficult to hear since I'm totally deaf in my AN ear.
-
I almost got synkinesis right ... well sorta ... was going to look it up and do some reading but life interrupted me ...it will give me something to do in the wee hours of the morning when I can't sleep
my tinnitus is a loud high pitched teeeeeeeeeeeeeeeeeeeeee that drives me batty at times ... like you my tinnitus sometimes interferes with my hearing what is said with hearing ear ... have to concentrate to not listen to the teeeeeeeeeeeeeeee so I can concentrate with hearing ear on what is being said ... if that makes sense ... also doesn't help that I have hearing loss in hearing ear ... a radio on or fan running at night used to be my best defense against the ringing but not is an irritant ... the left ear tinnitus is about like it has been since I can remember ... the right side (AN side) seems 10 times as loud as it once was due to inability to mask it