please respond.

[satman]

dr. just called and said he wants to discuss this 7-12 surgery  because there is a small risk
of rapid movement of some sort,he did not go into detail over the phone,has me extremely concerend.
curious if anyone has experianced any problems with this type of procedure?

[tony]

Sorry for your troubles - you must be concerned
So, hard to say exactly
I suspect its something to do with how big - and where
the problem is
There are a couple of possibilities
a)movement before surgery - yes ANs can grow like small kids
not a lot then alot at once (but hard to predict)  OR
b)Sometimes there is post op swelling - as there is in many ops.
Sometimes the post op swelling can be in a place where
there is little or no room - some kind of compression takes place
This has to be checked carefully - sometimes drugs are used
to reduce its effects - may mean a longer hospital stay
My suggestion is you make good notes when you meet him
you maybe a bit nervous and not remember very well later
- you may not easily remember what he says
Key to you is to find out what kind of experiance he has
both with the surgery and the outcomes
This is a job for the specialist and the experianced
Let us know how you get on
Best Regards
Tony

[satman]

hit tony,you are always very informative and thanks for the reply.i am about 3 mos postie,and i have had emg's
that show no nerves are firing,which means facial movement will not come back on its own so they want to do a 7-12 jump,the dr.called last night and said he would like to discuss it with me because there is a chance,small chance of some type of rapid movement after the surgery,am a little nervous as i am not sure of what type of rapid movement this could  be.
like when i blink is my tongue going to stick out,etc.man i would look crazy walking around like that.if anybody has any info please chime in and if the previous is somewhat the case,would you have the nerve surgery to have some sort of chance of getting movement back,i need you guys,please respond.thanks,john......

[Jim Scott]

I have no expertise in nerve surgery but that has never stopped me from responding to a cry for help.

Frankly, If the doctor is concerned, then you should be, too.  Still, I doubt he meant that you would look freakish. It sounds as if this particular nerve surgery may really be your best option if the nerves are not regenerating/firing.  Let the doctor explain what he meant by 'rapid movement'.  Insist he be specific and give you 'odds' on this happening.  Ask if he would recommend this operation for his own family, should that ever become necessary.  As Tony suggested, take notes...and don't be afraid to ask 'dumb' questions.  This is pretty serious business and no time to be shy about knowing what you're getting into.

I wish you all the best and hope this works out for you.

Jim

[tony]

No problem - note with nerves the repair time span is quite unreal
you might tear a muscle and be aware of it for weeks or more
nerves can take 6-12-18mths to fix and even then with assistance etc
Involuntary movement may just mean slight twitching etc
Time to focus on "getting well" - rather than setting a stopwatch ?
Good luck with the Doc
Tony

[satman]

thanks guys,without you i would be lost.

[Betsy]

Sometimes doctors don't exactly use good judgement in words they use.  Although it makes sense to them, it means something totally different to us.  I recently had a doctor use the word "stun" to describe what radiation does to a tumor...and I obsessed about it for a week!  Luckily Mark brought things back into perspective for me.

And of course, at the doctor's office we're hanging on every word and trying to find hope in what they're saying.  Emotions are running high and it's so hard to walk out of a doctor's office and remember everything they said, much less understand it.  Tony's suggestion of taking notes is a good one.  You might also consider a small tape recorder or a "doctor buddy".  Keep asking questions too; there's no such thing as being too well-informed when it comes to ANs.

When is your next chat with your doctor?

[satman]

i'm waiting on his office to sched.hopefully next week,PIN'S AND NEEDLES!

[Yvette]

Taking a friend with you to the appt. is a great idea. As the patient, we often enter this mental fog, and have trouble remembering what was said afterward. Please keep us posted. It's true docs sometimes don't choose their words well...I fainted in the hallway a couple of days after my AN removal, and when I came to, one doc told me my blood pressure was "pretty much nonexsistent", the other one quickly said, "Low! It was low." Best wishes, Yvette

[chrissmom]

Chris had the 7/12 jump graft done at the end of October.  The procedure wasn't too bad, almost an outpatient procedure.  The process of recovery takes a long time.  The doctor said a year before you notice results.  He started to show movement (very slight at 4 months but he is young and not everybody responds that quickly).  Once we saw a slight movement, we started facial exercises at the Facial Nerve clinic in Pittsburgh.  The exercises are important since you want to avoid synkinesis.

It is my understanding that there are two 7/12 procedures.  The first one uses more length of the hypoglossal nerve.  Chris had the jump graft which used only a small nick of the hypoglossal nerve.  The doctor anastomosed the facial nerve to this nick of the hypoglossal nerve.  This way avoids tongue, taste and swallowing problems.  Chris had the anastomosis 3 months after the tumor surgery.

I agree that sometimes doctors don't explain well and sometimes we don't understand.  I think the rapid movement is "synkinesis".  Synkinesis can occur after nerve regeneration.  When this happens you can get the wrong expression.  This is why Chris needs to do facial exercises to train the muscles and nerves.

If you want more details, ask him.  He is called dfcman on here.

[Obita]

satman:

Denise had the 7/12 jump done a year ago.  If you send her a message, I know she will write back and tell you
all about the surgery and recovery.  She is very happy with the results but it did take 6 months before she started seeing any movement. 

Is the doctor that called you the one that would be doing the 7/12 jump?  Have you heard back from him?

Hang in there satman, Kathy

PS:  I forgot to ask, how is the walking going?  Also, could you please ask your surgeon how big your AN was?  You might have the record!!  There have been some big ones on here but, a lemon?  We all just gotta know the details.........

[satman]

hi obita,if i remember correctly it was 8and 3/4cm.yea he will be doing the surgery and after saving my life,
i feel comfortable and confident.the deal is ,being that my eye blinks and closes most of the way
he wants to hook up a little further down the nerve in order to not mess with my eye.so the 7-12 will
only affect my cheeck,nose,mouth and i guess the eye weight will take care of the eye.as far as the eye i heard there are
different kind of tears,so i dont know how to find out if i still produce tears,and at this point i refuse to cry.the walking is getting so much better, and now i walk around the house using just the walls,man i can remember not being able to even pick up my foot.my dr. wants to wait after the nerve surgery to deal with the eye,i guess he knows best.Jim,i used one of your suggestions,i told him to treat this as i was his son,and he said he would base everything to do with me on that basis.

[chrissmom]

Yikes, I think you do have the record.  Chris had 5.3 x4.8 cm.  It makes you wonder how they get that large with little or no symptoms.

[Obita]

Holy crap satman!!!    Do you have a cd with a image of your AN?  Call it morbid curiosity but I just gotta see your AN.  I am so glad you are here to tell us all about it.  Did you have any symptoms before d-day?  I just cannot imagine what the pressure in your head must have felt like.  My AN was 2.5 cm and it felt like the thing was running out of room.

You probably don't see any improvement day to day so, keep looking way back to see how far you have come.  In another month, you will be able to say "Wow.  A month ago I was still touching the walls".

I am very glad your AN surgeon is doing the jump satman, good luck.  Kathy

[satman]

hi kathy,i cant say i have a cd or anything,never really thought about it.i guess just trying to put it behind me
or never thought about asking for one,wish i would have now.but believe me,i have all the reminders i need,ha,ha
the one thing i can say is each and everyone of you mean the world to me, and this whole experiecnce would be a
extremely hard thing to deal with without you.
my symptoms were headaches with dizziness with blurry vision associated with loss of balance[stumbling,falling down]
and hearing a wosh,wosh sound in left ear,with a throbbing pain in my forehead.all of this would happen at the
same time and only lasts for about 3-5 minute spurts.my favorite saying has become "it's not over after surgery"and now my kid says i walk like OZZY OZBORNE,and the funny thing is i kinda talk like him now,ha,ha