Off/On scary symptoms 1.5 years post op

[Dorothy]

Hi:

My name is Dorothy.  I am now 60 years old.  I had suboccipital craniotomy surgery for a left-sided 1.5 cm acoustic neuroma on 9/7/2006 at MGH by Doctors Poe and Barker.  I lost my hearing in the left ear, but other than some minor eye and facial issues, I have had a very good recovery.  However, lately I have had some different symptoms that I just want to know if they are normal
occurences at this point.  My left cheek twitched for one weekend off and on and this week I have had some sharp pains on the left side of my head.   They come and go infrequently, but I wonder if they should be checked or if this is just normal healing process.  My head certainly feels different on that side, but has ever since the surgery.  Most of the time I don't even think about it.

I have been reading everything just about on this site since I was diagnosed in March, 2006, but never logged on before today.  I couldn't help but notice that Katie had her surgery on 9/13/06 at MGH with Dr. Barker as her Neurosurgeon.  I was there just the week before!  Little different surgery on same side.  Katie are you having any of the same issues that I am or is anyone else in the same situation?

Thank you for any input and I just want you all to know that this discussion forum saved my sanity during the last 2 years.

Dotti
1.5 cm. acoustic neuroma removed 9/6/06 at MGH
Left-side - Sub-occipital surgery
Poe/Barker

[Boppie]

Dorothy, From my reading I see that you are 8 months post op right?  I am 16 months post op, Translab; no facial  effects remain.  I have twitches in my lower lip at night sometimes, the tip of my tongue burns once a week at least, transitory pains in my skull, and a dizzy day once in a while.  I found a knot from a stitch in to top edge of my scar just two months ago.  I am taking all of this as normal healing.  My one year MRI went as expected, okay.  I am 65 now.

[TP]

I agree with Boppie, these sensations sound typical. I never have had head aches (except before my surgery last year) and occasionally will get a sharp stab like pain on the other side of my head. My face has paralysis and I get wierd sensations on my face almost daily. Some days I have pain in my face from the paralysis and some days I don't notice hardly at all.

I think the nerves have a sense of humor and like to play games with us  

[krbonner]

Hi, Dotti!

Too funny about the timing of our surgeries!  As for me, I was told that the AN was completely removed with no damage to my facial nerve.  I do generally believe that, but I have some residual symptoms that make me believe there was some trauma to the facial nerve, even if it wasn't really damaged.  I don't have head pain, but my AN side eye doesn't cry like the other side (it waters, but doesn't cry) and I do sometimes get a tingly feeling around the outside of my left eye and the upper part of my cheekbone.  It's always worse when I'm tired.  I've just chalked it up to surgical trauma and hope that the nerve will continue to recover.  I can say that I think I am (very,very slowly) recoving some nerve function in my hand from the pressure bruise.  If it's taking this long for that nerve to start healing then I guess my facial one can still be recovering.  There are many here with much more severe damage to their facial nerves that are seeing improvement years down the road. 

If you're at all concerned, call Poe or Barker (though I always have trouble navigating through Milli at Dr. Barker's office).  It doesn't hurt to ask them the question, too.

Good to hear from you!

Katie

[jcinma]

Hi Dotti!
I also had surgery with Drs. Barker & Poe at MGH in Feb. 2005.  Please keep in mind that the inside of our heads heal a lot slower than the outsides. My situation is a little different as mine was a reoccurence and some was left so as to spare the facial nerve. It could still be your facial nerve getting back to it's old self, if there is any kind of weakness it could be the nerve re-firing.  I agree with Katie, if you are uneasy give Barker's office a call.
If you are from the New England area, please consider joining us for our next brunch in Worcester, a great group of people who just all happen to have or had ANs.
Jane

[Dorothy]

Hi Everyone:

Thank you so much for all the great input.  However, I have to tell you that it just dawned on me that I had my surgery September 7, 2005 and I wrote 2006!  I definitely feel very foolish and rather stupid at the moment.  I would love to blame this error on my AN surgery, but...............I don't think so! 

Therefore, Katie, my surgery was one year and one week before yours!  Everything else is correct and, of course, today after writing that inquiry I am not having any unusual symptoms.   Also, although I would rather not have had an AN, I do feel very fortunate that I do not have some of the problems that many people do.  My one year MRI in September was clear. 

I really would love to attend the luncheon.  I live in Vermont and I could drive to Worcester. 
Please let me know when it is. 

Again, Thank-you and if there is any input that I can offer, please don't hesitate to contact me.

Dotti

[ppearl214]

Dotti... dang! The brunch was in Worcester this past Sunday   I'm so sorry we didn't get to meet you... but... the next one is beginning August.  Katie and I are noted for going to the ANA Symposium in mid-July (please see ANA home page for details) and we are going to share symposium updates with the brunch crowd at the brunch soon after.

I'm sorry we didn't get to meet you this past weekend. Please keep an eye in the "AN Community" forum here for updates for the next "Best Coast brunch"

Phyl

Hi Everyone:

Thank you so much for all the great input.  However, I have to tell you that it just dawned on me that I had my surgery September 7, 2005 and I wrote 2006!  I definitely feel very foolish and rather stupid at the moment.  I would love to blame this error on my AN surgery, but...............I don't think so! 

Therefore, Katie, my surgery was one year and one week before yours!  Everything else is correct and, of course, today after writing that inquiry I am not having any unusual symptoms.   Also, although I would rather not have had an AN, I do feel very fortunate that I do not have some of the problems that many people do.  My one year MRI in September was clear. 

I really would love to attend the luncheon.  I live in Vermont and I could drive to Worcester. 
Please let me know when it is. 

Again, Thank-you and if there is any input that I can offer, please don't hesitate to contact me.

Dotti