Head Stuffiness

[nancyann]

Just wondering if anyone else continues to be plagued with 'head stuffiness'?   I try to ignore as much side effect stuff as is possible,  but I'm realizing I have CONSTANT head stuffiness.   A few days ago I took 2 Aleve, & for several hours the stuffiness was gone.  But, once the Aleve wore off, it's back to stuffy.  I don't want to have to take Aleve 'round the clock for this.   I'll ask my doc about it when I see him in Sept.  Just wondering if others have the same thing.  I'm > 13 months post op.  Thanks,  Nancy

[yardtick]

Hi Nancy,
I too I'm suffering from stuffiness. I do have sinus problems and this time last year I thought all of my complaints were a result of my sinuses.  I don't know if I can get Alieve here in Canada.  I have a nasal spray and I'm taking t-2's when my head starts to pound.  I suffer from migraines, but this is soooo different.  It seems the AN side always hurts.  Actually I have a facial neuroma.  I ache from above my eyebrow, behind my eye, across my cheek to the leftside of my nose, down my jaw bone and behind my left ear.  This week I could hardly taste the food I ate.  At times my left ear feels like it is filled with fluid.  I tilt my head to see if it will alievate the pressure.  Right this moment my cheek is numb.  Every day is a different battle it seems.  Did you sleep well last night?  I find when I'm really stuffy slepping is next to impossible.
Take care,
Anne Marie

[OTO]

Because my facial nerve was weakened, the sinuses on that side feel clogged.  I think its because there is no feeling.   When it bothers me, I wear those Breathe Right nasal strips, and it really helps to open up the nasal sinus on that side.   Overall, on some days that side of my head feels "thick and heavy" on other days it feels like I'm back to normal... don't know why...

[Static]

I'm 3-1/2 yrs post op and my sinuses have been really bad this year.  I've always had a  problem with allergies and sinuses.  I'm on my second sinus infection in as many months.  Its a horrible feeling when you can't breathe out of your nose, and especially when you are trying to sleep.   If I lay on my left side, the left sinus is clogged and if I lay on the right side, the right sinus is clogged.  About 10 years ago, I had a deviated septum fixed, and 1 year before the AN was discovered, I had polyps removed from my sinuses.  If I get another sinus infection after this one is cleared up, guess I'm headed back to the ENT's office to see what's going on.  The fullness in my head is bad enough but when the sinuses are even fuller when they are acting up, my head feels like it's going to explode, and not just or even from a headache, but from pressure.  Is that the kind of feeling you're talking about?  I've been so dizzy from my sinuses this summer but I really haven't said anything about it because I thought maybe I was just cracking up even more so than usual!    It's not really on one particular side that I feel dizzy but rather just dizziness and that fullness you get in your head just before your ears pop ......
~Karen

[nancyann]

I use those Breathe Right strips every night since my right sinus is collapsed from the paralysis - they work great.   I have had allergies since infancy - this head stuffiness is different from allergy related.  I had slept great Fri. night - woke up at 9am which is unusual for me to sleep so late.  Anne Marie - what are T-2's?  Aleve is just NSAIDS (non steroidal antiinflammatory meds, like Ibuprofen).  I took 1 Aleve yesterday instead of 2 & it only relieved the stuffiness a little, 2 Aleve does the trick - but that med is hard on the stomach, so I don't want to get use to taking it everyday.  The only way to describe the stuffiness is feeling like my head is so packed full there's no room for anything else.   Well, knowing I'm not alone definitely helps - I was getting worried re: increased intracranial pressure (which would have killed me by now so I know that's not it) - & since you have it too Karen & you're 3 1/2 years out, well......I'll ask the ENT about it in Sept.   Thanks everyone,  Nancy

[yardtick]

Hi Nancy,
T-2's are tylenol 2.  At times T-2's help with the pain.  Like the Alieve, T-2's can upset your stomach.  The CT scan and MRI both show thickening in the left sinues and nostril.  I'm told its a matter of time before the ENT will correct it.  It seems to me AN and sinus problems go hand in hand.  Do you find when it is gloomy outside and the barometer is falling you feel worse?  Not a great day for me here in Southern Ontario.  Last night we were at backyard party.  Everyone was enjoying themselves, I had such pressure in my face.  My teeth hurt, and my jaw felt like someone punched me.  My husband could tell be looking at me I was in pain.  We left just after 11.
Its so had to believe that these tiny neroma buggers can cause such havoc in our lives. I don't know about you, but I eat, sleep, drink AN.  I would love to talk to someone who has had treatment lets say 20-30 years ago and they are fine.  It would really give me hope.  I'm sorry I'm really down today. 
Enjoy the rest of your Sunday.
Anne Marie

[nancyann]

Hi Anne Marie:  I know what you mean re: eat, sleep, drink AN - the post op issues don't let me forget (only when I dream, & even then, most times I dream my face is paralysed vs normal again).    Lately everyday for me is a bad day - I really hate even thinking that but it's the truth.  I dread having to go to work tomorrow, telling everyone 'I'm great how are you?' when they ask (though I don't think anyone really wants to hear the truth).   I'm obviously having a bad Sunday too.   I don't notice the weather changes really changing the pressure in my head - don't think it could get much worse.
Well, take care my friend,  Nancy

[yardtick]

Nancy,
Did you have Acoustic Neuroma or Facial Neuroma?  Mine is A facial Neuroma.  I am getting a 2nd opinion on Sept 6, and a 3rd opinion an Sept 20.  Last Set the ENT went in blindly to deflate my bulging ear drum.  I had a CT scan on the 1st Fri of May.  It took 2 min.  I saw him a few weeks later and he wasn't concerned.  He told me I had something in my ear drum, probably dead skin or wax.  He told me my ear drum was bulging and the 3rd bone in my middle ear had thinned.  He was too concerned.  I told him about the sharp pains I had, priecing from above my ear and into my head.  He looked at me and said okay, we'll operate.
Sept 8 he had the shock of his life and mine too.  All 3 three bones in my middle ear were wipped out, and my ear drum totally destroyed.  He debulked my facial nerve.  My husband was frantic because the surgery was more than double the time he had booked.  I had facial paralysis, and the ENT couldn't understand why.  He had to send all of the sticky like substance he removed from my ear to pathology.  He had no idea what was going on.  I knew becasue I was reading everything I could at this point. 
I was referred at a neurosrgeon who has the bedside manor of Dr Jekel.  He wanted to totally remove the facial nerve and graft another nerve in its place.  He was very upset with me when I asked about GK or FSR treatment.  He didn't care too much when I asked him how many nerve grafts he has done.  He can't understand why I have pain.  I've asked how big was the neuroma before the operation.  Nobody seems to know.
I'm so glad I have found this forum.  I wish I found it this time last year.  I find working full time, my husband and 4 grown sons to be all too much for me to deal with at times.  My energy leaves have gone out the window.  I think I'm startng the change also.  I'm 47, but this year I haven't been regualr.  HOT FLASHES!!!!!!!!!!!  Emotional and my happy go lucky disposition has got up and GONE!!
So if anyone reading this happens to find it , its mine and I want it bacK!!!!  You can e-mail it to me!
Thanks Nancy and who else reads my rant.
Anne Marie

[nancyann]

Hey Anne Marie:  mine was a 2cm AN - from the OR reports I read, after they attached the nerve monitor to my facial nerve & started on the surgery, the facial nerve just died - they checked the monitor, another of my nerves & both were working - my facial nerve just died & never came back so the surgeon decided to cut it & reanastamose.  I can't second geuss or go back in time, so living with the facial paralysis.   I'm scared to have any further nerve surgery - I went to the surgeon who would have done the 12/7 - nice enough guy, but when I asked him how many he'd done he just smiled, no answer.  Doesn't give me much trust to go thru this again, so I've opted for facial reanimation with the cheek sling, face lift, etc.  I still won't have movement but at least I'll know my other nerves are intact.  I also wish I had known about this forum prior to my surgery, but what's done is done, now it's just figuring out how to deal with this the rest of my life.  Oh yeah, the hot flashes & emotional trainwrecks haven't helped either - I'm there with ya.   I lost my 'happy go lucky' disposition too....  funny thing is, the only symptoms pre op were constant tinnitus & decreased hearing on the AN side, oh, & once in a while my upper eyelid twitched.   My petrous (?) bone was totally gone too - the tumor had eaten it.  Don't know if it's better to have family or not - I don't, at least not living with me - geuss I'd have less pity parties of one if someone else was around.....
Take care Anne Marie,  Nancy
ps:  So, did they NOT remove the tumor the 1st time you had surgery?  & your facial nerve is functioning now?   And you need to have the tumor removed still??

[Windsong]

Well, I get head stuffiness, a pressure feeling in places, which makes me disoriented, feels like being spacy too and i have the nose stuffiness and /or nose drip. I went on the net to see what it said about the nose being clogged (An side)... i found this site which has  a diagram after the intro on how to accupressure/massage the nose and ear area... i tried it and amazingly it worked...

Also I read thru the blog hahaha and got a chuckle about some of the intense comments... whatever, nose drips and nose clogs certainly do make a lot of people miserable....

so here it is and who knows that massage might help someone here....

http://www.mind-energy.net/archives/90-Get-rid-of-stuffed-or-running-nose-without-drugs.html

cheers and good luck

windsong
PS Anne Marie... hang in there... we are almost into the middle of August so not much longer for your appt... i'm glad you enjoyed NY by the way... take care... and have some more fun through the rest of the summer.... w.

[Static]

Windsong,
Thanks for that site, it did help for a little, but not completely.  Hey, at least it was something and I'll take that over nothing!  Now, however, I'm starting to get a headache, maybe it sent all the snot up to my brain! LOL  If I get enough courage tomorrow and someone to go with me, I'm going to the jersey shore, and I can go in the ocean and get an ocean enema!  I'm not very good on my own with balance in the water but maybe my 14 yr old daughter will hold my hand!  Maybe then I can nap on the beach without having to breath through my mouth! 
~Karen

[Windsong]

Karen, I'm glad it helped even if a bit and for a short time.... That site and diagram was the very first hit I got when i googled something about  sinus and stuffed nose and what to do.... interesting that you said a headache because I had a niggling faint one after I tried it too and even a faint ache in my nose (and i did not apply a lot of pressure at all)  but i tried it twice more today and this is the first day I am better probably about 85%- 90%  better than the last weeks/ months and i didn't think about my nose for most of the day... hurrah I say... I don't care why it works as long as it does....and right now it almost feels a 100% though I have some prickly feelings on the top of my head.

I also want to add that for the first time in ages that after being up and awake for three hours I thought what the heck, I'm so tired I'm going back to sleep and that I did ..... I woke up six hours later, (very unusual for me to do that) and  rued the fact that I missed a lot of the day but then I thought hey this is good I feel so much better. After socializing a bit, chatting with about four other persons, I went for a walk.....a nice slow one enjoying all the flowers and gardens on view, the green grass, the trees, all that...... all I can say is that it was fabulous not having the head/ear/nose sinus symptoms bugging me. I didn't even have to use the kleenex i stuffed in a pocket before I set out.

I do know that not enough sleep and being tired adds to the sinus symptoms so it's quite possible all the extra sleep helped me today too. But like the guy said... you can do this anywhere anytime anyplace and if it helps I plan to do it whenever.....I don't care why it works

call it maintenance lol...... i'll see how it goes....

also one doc I met  did tell me that eliminating dairy and cheeses can help so I'm going back to very little of that too and will see if that adds help with this....

do go to the ocean and enjoy the beach and the sea......even if it's to watch the waves and dream.....

windsong

[yardtick]

Nancy,
They removed the tumour and debulked my facial nerve.  What I have now is more growth on the nerve.  I have the report from my last MRI in Jan/07.  "There is residual tumor extending from the geniculate ganglion posteriorly along the tympanic segment of the left facial nerve extending to the posterior genu.  The findings would be in keeping with residual facial nerve schwannoma."
Nancy where about in the US do you live?  Do you work full time?  I'm too busy to have a pitty party, but I read a lot and that helps me to block out the real world.

Windsong,
I know I only have to wait a few weeks now.  My nose and lips have been twicthing and it feels like pins and needles.  My teeth have started to ache again, with bad headaches along with the stuffiness.  I also have another appointment @ ST Michael's in Toronto, 2 weeks after Toronto General.  I'm glad the Dr here made the referral.  I want to hear what they both have to say.  Believe it or not I know in my heart I'm going to go with the Dr from Toronto General.  I was so touched that he had the time to e-mail me.  I also value you opinion.  I live in the Stoney Creek area off of Queenston Rd & Hwy 20.  I do not drive, but I would really love to met you.  If you are up to it, lets make a date!

Good night Nancy and Windsong,
Anne Marie
P.S. Nancy you could join us too!!  Canadians are very friendly, that's what I was told last weekend in New York City.

[yardtick]

Nancy,
Dumb question....what's a 12/7? 
Remember I'm a Newbie!!!
Anne Marie

[Windsong]

Anne Marie,

I could meet you in Burlington? can anyone get you that far? there's a restaurant in this hotel around the bend after you get off the bridge and into burl....it's on the lake... haven't been there for years but i assume it's still there..... I'm not sure how much longer it takes to get to your place from there?  that's around my limit for fatigue so far.....
pm me...

windsong