Author Topic: Odd Facial Sensations  (Read 11845 times)

Soundy

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Re: Odd Facial Sensations
« Reply #15 on: June 07, 2010, 11:07:20 am »
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 ...
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Soundy

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Re: Odd Facial Sensations
« Reply #16 on: June 18, 2010, 10:30:27 am »
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 ...
 
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

yardtick

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Re: Odd Facial Sensations
« Reply #17 on: June 18, 2010, 12:09:12 pm »
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
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

saralynn143

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Re: Odd Facial Sensations
« Reply #18 on: June 18, 2010, 12:59:43 pm »
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
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Soundy

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Re: Odd Facial Sensations
« Reply #19 on: June 19, 2010, 07:11:57 am »
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 …
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Soundy

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Re: Odd Facial Sensations
« Reply #20 on: June 19, 2010, 07:34:17 am »
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
« Last Edit: June 19, 2010, 07:45:35 am by Soundy »
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Soundy

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Re: Odd Facial Sensations
« Reply #21 on: June 28, 2010, 07:18:26 am »
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
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Soundy

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Re: Odd Facial Sensations
« Reply #22 on: July 05, 2010, 08:20:10 am »
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
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Soundy

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Re: Odd Facial Sensations
« Reply #23 on: July 24, 2010, 07:49:30 am »
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
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Cheryl R

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Re: Odd Facial Sensations
« Reply #24 on: July 24, 2010, 09:46:27 am »
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     
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

ddaybrat

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Re: Odd Facial Sensations
« Reply #25 on: July 24, 2010, 03:22:06 pm »
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.
1.4 x 1.5 x 0.4 cm AN on left side
retromastoid craniectomy 3/31/2010
Dr. Randy Gehring - Lafayette, IN
Tinnitis, deafness
Vestibular nerves destroyed
4 months post-op:
Facial movement returning
Paralytic ectopic repair on lower lid
Transverse ligament adjustment on upper lid

Soundy

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Re: Odd Facial Sensations
« Reply #26 on: July 24, 2010, 09:23:13 pm »
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
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery