"Fullness and Pressure" in Head Post AN Survery

[lxg57]

Hi, Kaye- I'm sorry to hear that you and your husband are going through such a hard time.  I'm only 6 weeks (today!) post retro sigmoid so certainly have no long term experience to offer.  Right now I feel so much better than 6 weeks ago that I can only imagine how upsetting it must be to have recurrence/increased severity of symptoms.

I did notice that you were talking about other options for surgeons in the Northeast.  May I make one?  I live in Rochester, New York--not too awfully far from you and your hubby.  The University of Rochester has world class neurosurgeons.  Dr. Kevin Walter did my surgery.  He's new in our area but comes with credentials from Pittsburgh and Johns Hopkins and concentrates on brain tumors in particular.  If your insurance will permit your requesting a second opinion out-of-area and you and your husband are up to the trip (Don't worry- it's snowing a little bit today but the worst is over in Rochester!), you may want to touch base with the University of Rochester Neurosurgical Department.

Good luck to you and your hubby (P.S.-He's lucky to have your love and support!)

Linda

[Stevey]

Kaye,

I grew up in Laurel Springs NJ and live just outside Philly, in Drexel Hill, PA,  I am only two months post op but highly recommend my neurosurgeon at UPenn, Dr. Judy.  He is fantastic.  I also hear that Jefferson's headache center is good but it's not really that.
Best wishes to your Husband, that doesn't sound right 7 years down the road.

Steve

[Kaye]

Nancy:  Have you gone and tried the Accupuncture as of yet?   Anyone else try?  If so, outcomes....Thanks.     Having a bad storm here in NJ today, rain and winds; but better than rest of Northeast, so far.  Thanks to all and have a wonderful day.   Kaye and Joe

[nancyann]

Well hi there Kaye, good to hear from you again.   How's Joe doing ?
I have continued with Acupuncture, I go once a week & after, the acupuncturist uses a 'Luminex Laser', runs it along the facial nerve route.
I had started acupuncture 10/06, then in Jan.07 had a repeat EMG which showed 10-15% nerve regeneration - not enough for movement though.  Would I have had the 10-15% nerve regeneration without the acupunture, who knows?
So my next EMG is May 29th, hoping for continued improvement, even though I still have no right sided facial movement.
If there's no improvement, then I'll have the 12/7 jump surgery.
I still have the 'full head feeling', acupuncture doesn't help that.  I've learned to live with it along with the other nuisance symptoms of post surgery, just put it out of my head (like the AN!).
Anyway, you have a great day too my friend,  say 'hi' to Joe,
All the best,  Nancy

[Kaye]

Hi Nancy:  I was hoping the accupuncture would help the so called, "Bobble Head" - the fullness, etc.   Sounds like you really have severe facial nerve issues.  .  I can only say you have such a positive attitude - - I will pray that you get your right side facial movement back soon.   I'm really thinking and thinking about Joe's right sided paralysis afterr the surgery.  If I recall correctly it tookabout a year - it was very, very slow.  I do reacall him doing facial exercises, in front of a mirror, a few times a day - - just trying to move mouth, eyes, brows, any kind of fact he could make.  Anyway, I would honestly tell you that he is, from my observations about 90% back, so there is always hope.   I just don't know where the time goes.  Again, keep up your wonderful positive attitude and your helpfulness (is that a word ) with your postings and e-mails.  Kaye (& Joe)

[nancyann]

Hi Kaye:  No, it doesn't help the fullness, the feeling like I've got packing stuffed on the AN side.  Is Joe's head fullness only on the side with the (now gone) AN as mine is ?
Thanks for the words of encouragement re: the facial paralysis.   I'm a 6 on the Brackman scale, about 10 months out, oh well....  I also try to 'think' my face to move, it's funny, last night I had a dream I could whistle,  I've also dreamt my smile comes back !!   It took me awhile to realize our bodies are just a covering for what's important, our spirits;  however it IS nicer when the body cooperates, doesn't go haywire with one problem or another !!
Well, always good to talk to you Kaye,    good thoughts always,  Nancy