Author Topic: Informal Facial Paralysis survey  (Read 10602 times)

Jim Scott

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Re: Informal Facial Paralysis survey
« Reply #15 on: July 08, 2006, 03:52:33 pm »
Jim,

Did they remove the whole tumor or did they leave some? Just curious.

DS

According to my neurosergeon, they left 'approximately 5%'.  The plan is to begin treating that with fractionalized radiation treatments in August.  I have my initial consult with the radiation team on July 13th.  I'll have an MRI at that time to determine exactly how much of the AN tumor remains.  My hope is...very little!

Jim


EDIT:   I had the consultation as scheduled and we've decided to wait until September to begin a Fractionalized Radiation treatment plan: 30 separate radiation treatments given over 30 days.  Very conservative but also quite safe and with a 15-year record of success with few complications or negative side effects.   My kind of plan!   Although there will be an MRI scan taken just prior to the radiation treatment (in September) to 'map' whatever remains of the tumor (not much, we assume) I still have a surgical 'follow-up' MRI scheduled for July 21, which should be informative for both the doctors and myself.   

 
« Last Edit: July 18, 2006, 01:37:21 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Busybelle1

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  • 2cm AN surgery 5/11/06 Dr. Wiet
Re: Informal Facial Paralysis survey
« Reply #16 on: August 04, 2006, 08:58:09 am »
My surgery was 5-11-06 and had immediate facial paralysis.  Dr. said my nerve is intact but was flattened by the tumor.  He go all of the tumor.  I did not have numbness.  I had full sensation on the paralyzed side but no involuntary or voluntary movement.  Dr. told me 4-9 months to come back.  At my 2 month visit he saw movement along side of my nose with the wrinkle and a crease.  Friends and family tell me my face and mouth are not as drawn as they used to be.  So hopefully I am experiencing a comeback of my facial nerve.  The biggest problem for me is the eye not blinking.  The only thing they told me to used is Tears Naturale.  I keep hearing about thick stuff on here but have no idea what it is.  Good Luck to you.

Cheryl R

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Re: Informal Facial Paralysis survey
« Reply #17 on: August 04, 2006, 09:41:22 am »
The ey drop brands usually have different formulations.    Tears are the thinnest and formulas called liquigels are heavier for more severe dry eye and then the heaviest gels for night.     You can sometimes get samples from your eye doctor.    Walmart and Target have the eye drop sections and you just have to look them over and try different brands.           My favorite is Refresh Liquigel in the bottle.    I don't like those little individual vials as I poke myself in the eye putting them in.    I tried a Genteal brand and it never did a thing for me.    Some people like Systane.    It gets expensive if try a lot but the eye needs it. You need to use them as soon as the eye feels any bit dry or painful or scratchy.   
Have you ever seen the website www.bellspalsy.ws               Jacki Diehls a facial therapist from Madison.WI has some good info on that site.        I have visited her once and she called the a sore spot a muscle spasm so am not exactly sure if this is your case.   
       Good luck with your recovery!                         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

cush

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Re: Informal Facial Paralysis survey
« Reply #18 on: August 04, 2006, 02:12:15 pm »
Hi, Im a newbie to this site but had a AN surgery in St. Vincents July 6 2005.13 months ago.  Dr Brackman and Hensilberger were the surgeons.
I lost all facial movement on my right side of face. No eye blink no brow movement droopy mouth. My nerve tested ok after surgery but lost face right after surgery.
I am getting a emg test and they want to do a hyoglossal nerve graft. I have alot of concerns about this nerve graft. Has there been any post about doing this?

Dry eye is the worst. I live in the desert 126 degrees last week. I use bausch and lomb moisture eyes pm the salve,  instead of refresh celluvis drops. I put it in in the morning and usually only need it again in the evening.

Thanks for the input.

eyedocjim@gmail.co

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Re: Informal Facial Paralysis survey
« Reply #19 on: August 20, 2006, 09:51:51 pm »
Dry eye after AN surgery is extremely annoying, can be painful, and in some cases lead to loss of vision, scarring, and need for corneal transplant (this is pretty rare, however)

First mainstay is artificial tears, the thicker the better (Celluvisc, Genteal Gel, Refresh Liquigel, and especially Refresh Endura (this is the inactive vehicle that Restasis comes in). naturally, the thicker the drop,  the blurrier the vision, at least for a while. Lubricating ointment at bedtime is a must (Lacri-Lube, Refresh PM), although you'll be a little gooey when you wake up.Leave the ceiling fan off when your'e sleeping. sometimes ordinary swim goggles help. there are also various brands of moist chambers, which are taped or banded over the eyes to reduce evaporation around the eye's local environment.

If you have significant difficulty closing the eye, strongly consider a gold weight implanted in the upper eyelid. Its' a short procedure, and partially closes the eye, reducing evaporation of your body's natural tears.

Punctum plugs, which are placed in the tear drains in your eyelids to keep your natural tears in your eyes where they belong (analogous to putting the stopped in the drain to keep the water in the bathtub.)  very safe and often effective.

Lastly, Restasis, a pricey prescription eyedrop can increase tear production and may help some folks.

Hope this helps.

DeniseSmith

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Re: Informal Facial Paralysis survey
« Reply #20 on: August 21, 2006, 02:16:52 pm »
Jim,

Sorry I haven't posted sooner.  I have kind of been out of commission.  I had the 12/7 nerve surgery on 8/3/06.  My facial paralysis is permanent.  My tumor was emeshed like speghetti through my facial nerve.  My dr. had not option but to cut it, he tried to piece it back together, but it did not take. 

I hope your radiation treatments in September go well, and you are able to regain your smile and movement in your face.  Good Luck!

DS 8)

Joef

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Re: Informal Facial Paralysis survey
« Reply #21 on: August 21, 2006, 02:40:27 pm »
 Crush, I'm wondering are Brackmann and Hits that want the hyoglossal surgery ? and does "house" do that? or did they reference you to somewhere else?

 I'm wondering because I'm much the same as you ... I'm one year out from Brackman and Hits .. no movement  >:( but I am getting lots of zaps, pain, and a swollen feeling in my check in the last few weeks... its got me wondering whats going on!! (no I have not talked to them, yet)

4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

cush

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Re: Informal Facial Paralysis survey
« Reply #22 on: August 21, 2006, 04:26:44 pm »
Actually I saw Dr. Brackman last week and they did a emg test at St. Vincents. It showed that my nerve was not doing well.
I have actually been feeling better and many people say I am looking much better. My concern is If I do the Hypoglossal antisomosis
It will end any chance of facial nerve recovery. I am inclined to wait right now. Dr. Hit says he isnt anxious to do the hypo surgery for that reason alone. He felt my face was showing some signs of recovery. Statistics say 1 in 10 million chance of not recovering when the nerve test intact at end of surgery. I belive our bodies want to heal and nerves take a long time.
best wishes to all.
Cush

Joef

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Re: Informal Facial Paralysis survey
« Reply #23 on: August 21, 2006, 06:42:13 pm »
I feel the same way, I can wait 5 or even 10 years.. I only wish I knew for sure (one big surgery was enough!) ... they did tell me my facial nerve tested ok at the end of surgery, so I guess I shall wait some more...
« Last Edit: August 21, 2006, 06:50:05 pm by Joef »
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Joef

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Re: Informal Facial Paralysis survey
« Reply #24 on: August 21, 2006, 06:47:21 pm »
Cush - one more thing! .. Did he say to do anything? .. Electric stim or facial type exerices to keep tone ?

I was last there in Nov 05, starting to think what weekend would work for me for a appointment..
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital