External Eye Weights

[4cm in Pacific Northwest]

Tomorrows work will be stitching the eye shut along about a 5mm line, off-set from the center...just enough to close the bad eye when I close the good one...but you already read all that.


Doc

Oh MY, goodness "Doc" (who is not really a "doctor") I wish I had noticed and read this post, of yours, sooner.

HUGS

I am sorry I just saw it today- for the 1st time. (I am busy with kids, aging parents… and not on the ANA forum as much as I used to be. Call me the “melted cheese” of the “sandwich generation” – this autumn…)

Your stick-on-eye-weight was simply NOT heavy enough.

I have 2 stick-on-eye weights. I started off with one of the heaviest, a 2.4 with max width or heavier  (I “think” I have to find the original receipt to verify) …and then went down to a 1.2. with min width (again I have to check the receipts for the exact sizing). I have the freedom to switch in and out as I choose.


Here is the PDF from Med Dev with the sizes. I am thinking that you may need the max width too.

http://www.fci-ophthalmics.com/files/pdf/blinkeze.pdf

I have never had Botox in the “eye area” as this is known and well documented to make it worse. (HUH??? “Hold the eye open”?!  Oy ya ya- they are just re-paralyzing the eye lid again and regressing your progress! This sounds “quack” to me.) I only have Botox in the neck and chin as these synkenisis muscles were inhibiting the eye from working. When the Botox is in affect there- I do not need the weight at all. If I am without Botox, totally sleep deprived, stressed and drank way too much coffee (you know the “vicious cycle”), not diligent on my facial therapy- I occasionally have to put on the bigger eye weight on to fire up the nerves for a few hours. (This is why I have not given mine away and hang on to these for the rare time I “might” need these still.)

It sounds that you are NOT working with an educated professional who knows what they are actually doing. (Oy ya ya!!!)

HUGS

Are you working with an “oculoplatsic specialist” or “neuro- ophthalmologist”?

I am sorry but I think “if” your doctor had initially started you off with the heaviest stick-on-eye-weight – you would have been just fine. As you improve then you go to the lower weight. Starting off with the lighter weight seems to have set you up for failure- here. I am thinking this should have happened even before one was surgically implanted -to wait and see how you actually progressed.

The photos you posted on your blog mortify me.
http://www.docbreger.com/Home/Tumor_Talk/Entries/2009/11/25_Third_Surgical_Eye_Procedure.html

What state are you located in?

 If you want I will contact my Oculofacial specialist, who has proved to be nothing short of fantastic (many of my local ANA buddies agree.) Or you can call his office and leave a message, yourself, to see if he has contacts/colleagues closer to you. I know you have had not so great experiences with some doctors- but please be ever-so-kind to this one. He is a rare gem and one of my VERY favorite doctors here in Oregon State. He is one of the few who also has exceptional office and clinic staff. (The combo of great doctor and good clinic/office staff is a rarity… they all have great people skills I so appreciate.)

Here is Dr. Ng’s info
http://www.ohsu.edu/xd/health/services/providers/ngj.cfm

(There credit has been given where credit is due- in a “patient review”. NO doctor cronyism there.  He actually did a presentation for my local ANA group… I am not the only one here- that thinks he is excellent. Other ANA’ers going to him now-too.)

… See if he knows of a reputable colleague in your area.

CYBER HUG.

DHM

P.S. He and my nueromuscualr facial retaining therapist, Wanda Crook of San Diego, did a presentation together … and I showed my progress photos to my ANA group (ie documented “proof is in the pudding”)… I think I should propose that they present at the Cincinnati ANA symposium. More people need to hear about the less evasive approach to facial nerve damage and eye (lack of eye-lid closure is caused by the facial nerve) care & recovery. You are a prime example, in this thread, as to WHY we need to get the word out there- more.

[Doc]

Hey DHM,

Wow, had a thing or three to say did you?!?  I'm seeing an Oculoplastic Surgeon.  Prior to him joining the practice, I was seeing one of the partners who did the first procedure which was a temporary closure with bolsters...it failed within two weeks.  The "OS" did the Weight Implant and every procedure since; he also prescribed a 1.8 gram weight which I ordered myself from MedDev; I'm real familiar with them.  The Surgeon told me this morning to bring the weight with me when I return on Monday to have the stitches removed.  He thinks the combination of the weight and my lid being sown together will be all I need for now.  I'm in Atlanta, GA, to answer that question.  Sorry the pictures on my blog disturbed you, that's the only face I've got; oh, you were referring to the eye, ha!

Thanks for jumping in on this thread...always good to have a twenty ninth opinion.  By the way, I mentioned to the Surgeon that I wished we had tried the eye sewing deal before the implant, he didn't say anything, just walked away.

Take care!
  
Not a Doctor

[4cm in Pacific Northwest]

Thanks for jumping in on this thread...always good to have a twenty ninth opinion.  By the way, I mentioned to the Surgeon that I wished we had tried the eye sewing deal before the implant, he didn't say anything, just walked away.

Doc,

Wouldn’t you rather just have tried double-sided sticky tape before stitches and scalpel (on the eye lid to insert the weight implant) were used?

When I have a regression with my eyelid function (the sleep depravation coffee thing  ) ... I find the lighter weight not that helpful. But it did have its time and place when I transition from heavy weight to no weight. The heavy one seems to just close the lid (yes heavy and cumbersome at times) and then eventually the lid starts up again. Sort of like jump stating a car... until the alternator get the battery charged up.

(Oh one of those car analogies again  ... But hey I have a great mechanic and we did give him a glowing report on Angie's list.)

Oh your face is just a fine face  ...and did NOT mortify me... what mortifies me is all the stitches and bruising to your eye-when some temporary double-sided sticky tape might have worked...

Man you are one tough cookie.

 I guess if I had not found Dr. Ng... I might have been in the same boat as not all OS will try or advocate the stick-on eye weight. (Especially if there is a profit margin at stake and that is what motivates them- over patient wellness.) Also many AN’ers do not get eyelid recovery and do need the implant. But for those who the facial nerve recovery DOES looks promising I think the stick-on-weight, and the also some transpore tape at the side of the eye to keep drops in (see ANA eye booklet) , is THE way to go. Know that there were times when I was so sticky-taped-up I thought I would soon come “un-glued”... It takes patience … and I know some AN’ers who lost their eye weight down the sink... with the dirty dishwater.


Have you had any eyelid function return- at all?

DHM

[Doc]

Have you had any eyelid function return at all

DHM - Unfortunately no, I haven't had any function return, that includes zero relief from the facial paralysis that plagues me.  I'm even still having trouble swallowing and must be careful when eating and, I use a straw to drink everything, even coffee from a sippy cup.  I am only four months out from Surgery and all I really have is time to get better...hopefully thats the trick to beating back all the nasty side effects of AN Tumor Resection, patience and lots of time.  Truth be known, this cookie is getting a little rough around the edges.

Thank again!
  
Doc

[4cm in Pacific Northwest]

Doc,

Here is an old archived post mine when I was once where you were.

http://anausa.org/forum/index.php?topic=5358.msg48302#msg48302

I had my 1st teeny weenie itsy bitsy sign at 3 months and 5 days

You are at 4 months and 3 days…

Know I can smile and my eye does not need an eye weight now (but it sure did then!!!). However I will be honest and tell you I have synkenisis now. The longer this takes to come back the higher chance for the nerve re-growth to go down the wrong channel… but this does NOT always happen.

What did your surgeon say about your facial nerve when they tested it at surgical closing (E- stim)? Does the surgical team predict facial nerve function will return?

Another BIG HUG to you.

DHM

[4cm in Pacific Northwest]

Doc,

Look at Jeanlea’s progress
http://anausa.org/forum/index.php?topic=10177.msg119291#msg119291


Late recovery can happen…

DHM

[Doc]

DHM - My Neurosurgeon told me it could take up to a year or longer to regain any eye function or notice any relief from the facial paralysis; but I will experience some renewed function at some point.  He did very clearly state that my 6, 7 and 8 nerves are intact, and will function again at some level, but will never come back 100%.  My left vestibular nerve was severed during surgery so I'll always have balance issues to some degree. I am deaf in my left ear and have been for well over a decade; that will never get better. I've seen an ENT; I am not a BAHA candidate; end of that story.  Funny, I already saw both of the older threads you sent links for.  I've been sitting up nights, doing a lot of reading on the Forum...it's not always positive but it is certainly informative and to the point. I still think I'm lucky, I've always been a *when* kind of guy, not an *if* kind of pessimist...and I'm very much alive and yes, well!

Thanks as always!
 
Doc

[4cm in Pacific Northwest]

DOC,

I just came in from outside as I am working on the acreage getting it “to bed” for the winter here. Only in Oregon do we mow our grass in December  :-\…


As I was riding away with my buddy, John Deere, (could not do that 1 1/2 years ago!)  I was stumped on this one… Came in and just had to ask you- before I go out to do more thinking and fresh crisp air breathing (and reflecting) on this wonderful bright sunny day. (No rain- quite unusual for these parts)

Here goes…

Well, I saw the Eye Surgeon earlier this afternoon.  He said he did some more reading on Botox and has decided the limited 4 to 5 weeks benefit it might provide is not worth it.  He also mentioned he'd rather see me have my CK treatments that will start pretty soon without a chemically induced droopy eye...if that makes sense?!?

I am confused? So he actually injected Botox into your face? “Not worth it” mean he did not inject?  Can you clarify?

Have you had any eyelid function return at all

DHM - Unfortunately no, I haven't had any function return, that includes zero relief from the facial paralysis that plagues me.  I'm even still having trouble swallowing and must be careful when eating and, I use a straw to drink everything, even coffee from a sippy cup. 

So basically your face in still at the placid stage. Yes?

I have had much dialogue with my OS and went to ALL the face workshops at the ANA symposium in Chicago – but I am NOT a doc. All explained that you do NOT inject Botox into placid face- only hypertonic or functioning muscles. So why on earth, I ask was he injecting Botox into an already placid face? This seems bizarre to me that one would inject at that stage.  I hope some other forum-ite with facial palsy experiences pipes in here.

Re the ENT

  He did very clearly state that my 6, 7 and 8 nerves are intact, and will function again at some level, but will never come back 100%.  My left vestibular nerve was severed during surgery so I'll always have balance issues to some degree. I am deaf in my left ear and have been for well over a decade; that will never get better.

Your 8th cranial nerve cannot be in tact if you have no hearing and the balance nerve was severed.
Here is the 8th cranial nerve function
http://en.wikipedia.org/wiki/Vestibulocochlear_nerve

I am deaf in my left ear and have been for well over a decade; that will never get better. I've seen an ENT; I am not a BAHA candidate; end of that story. 

If you are deaf in the one ear you ARE a candidate for the BAHA. So why is you ENT saying you are not? I don’t get it.

Read this
http://www.umm.edu/otolaryngology/baha.htm

Also don’t believe anyone that once the balance nerve is severed you will be plagued with balance issues. Mine was severed… and I am very determined to get the unicycle thing before I am age 50.

Read this one.

http://anausa.org/forum/index.php?topic=5584.msg56072#msg56072

After you see the photo- read the entire thread. I chose not to believe the doctor and I knew that vestibular therapy had worked for others.

Keep telling us more and we can ALL here point you to some good resources. Do not give up... lots can be done here and you are not the 1st, or last, to go through this.

DHM

[Doc]

No Botox - he decided not to do it.
I have little feeling on the left side of my face; no eye lid function, my eye points up and to the bridge of my nose, droopy eye brow, cheek and so on down the face.
My hearing Loss is due to Bone damage not nerve damage.  There's a small bone involved with hearing; mine was crushed by the Tumor early on and the same ENT that noted the bone damage also noted that I'm not a candidate for BAHA.
My balance has actually improved because I work at it. I personally do not believe it will ever be 100%...better but never perfect again.

I have an appointment on January 11th at the Atlanta Ear Clinic. Dr. Cronin did a presentation at our last group meeting here in Atlanta and I'll be seeing her regarding all the facial issues I'm still experiencing.  She thinks they can help me.

Doc

[4cm in Pacific Northwest]

Doc,

Is this her?
http://www.atlantaearclinic.com/about_gaye.htm

OK OK Sounds to me you are doing the right thing... and you know what you are doing there.

This looks like just the place you need
http://www.atlantaearclinic.com/

If it is a great place- be sure to post. Patient testmonies have MUCH weight here.

  Ok I am still not on board that you are NOT a candidate for the BAHA- if the 8th cranial nerve was severed. I think you should get a 2nd opnion. Send the new ent/audiologist/neurotologist (Who ever you choose for a BAHA 2nd opinion) your MRI scans. This does not mean you are abandoning your ENT- just getting confirmation (or contradiction ).

Schools out- I have to stay off the forum for the rest of the day... family has me hopping. Both my youngest and myself are practicing the unicycle.

I believe that I can get to almost 100% balance and I am a BIG believer in brain plasticity.

http://en.wikipedia.org/wiki/Neuroplasticity

I just can't pirouette, in dance, as well as I used to... but I can do a double one now... and 2 years ago I would want to hurl just turning with my walker.

You ARE going to get better. Keep moving forward.

Cheers,

DHM

PS Cute PUG! I have a yellow lab... who can retrieve the cell phone or cordless I left off the receiver being have no directional hearing to locate it myself. I would place a "treat" with the phone and call it. When it rang he found the treat next to the phone... we went from there. He know helps me find it (and God help me if I don't produce a treat!) He would not leave my side until I was back walking normally. Every time I had to scramble over a fallen tree on the path , in my woods, he would wait and allow me to lean on him as I got over. If the kids are calling me from outside and he knows I do not hear them - he licks my hand until I go to them. Work with your pug and see what he/she can do for you too.
http://www.goldenearsdogs.org/home/training_your_own_hearing_dog

[Doc]

You sure a something...keep it coming.

Yes, I'm seeing Dr. Gaye Cronin...she'll well know down here and comes with good marks.  Cindy from our area had her come in and speak with our group, that's how I know of her--she seems really nice too.  I'll let you and everyone else know how things go there.

I'm not worried about hurting my ENT's feelings, he's not on my Christmas card list or anything like that, neither is my neurosurgeon for that matter. I just don't think I'm going to get a different read.  I've done some reading here and there and it doesn't sound (no pun intended) good.  My 8 nerve is intact according to my neurosurgeon.

The Pug is my buddy Freddie.  He isn't just posing for the picture sitting up on my shoulder...he "always" either sits on my shoulder or directly on my head while I'm lying in bed.  When I came home from the Hospital after my brain surgery, he stayed in the bed with me for several days.  He did the same thing in April '08 when I came home from my Heart Bypass surgery; never left the bed, my boys had to come up and get him to eat and go outside.  He's a great dog and has been taught some simple tricks...not sure he's TV Remote retriever capable though?!?

[4cm in Pacific Northwest]

my eye points up and to the bridge of my nose,

DOC,

This is not caused by the facial nerve damage. You sound like you have oculomotor nerve issues

Here are the cranial nerves and their functions

http://en.wikipedia.org/wiki/Cranial_nerves

This sounds like Cranial nerve #3
http://en.wikipedia.org/wiki/Oculomotor_nerve

Have you seen a neuro- ophthalmologist?

I had some wild nystagmus going on after surgery- due to brain swelling. The eye was shifting all over. Settled down as the swelling did.

Is your eye stuck on one position?… As this is what you describe..

DHM

[sgerrard]

I am going to chime in on the BAHA question, as it has come up before, and it is worth repeating.

The first use of a BAHA is for improving hearing on the same side as the BAHA. It is used this way when a middle ear problem, such as the small bone issue Doc mentioned, is interfering with hearing. For that to work, the hearing nerve and cochlea must be functional, and the problem has to be one of conducting sound from the outer ear to the inner ear. ENTs and audiologists are most familiar with this application.

The second use of a BAHA is to address single side deafness, or SSD. That is the use familiar to us here on the AN forum, to the point where we forget that it is not the primary use of a BAHA. For SSD, the idea is that the BAHA mounted on the deaf side will transmit sound through the skull bone over to the hearing side. It does not do anything for hearing with the deaf ear; it does allow you to hear sounds on the deaf side with the good ear on the other side. It is a less well known use for a BAHA, except among the AN crowd and others afflicted with SSD.

See this link: http://products.cochlearamericas.com/baha/introduction-to-baha/who-can-use-baha. Conductive will come up first; read that, then click the SSD tab.

So Doc's ENT is correct that Doc does not qualify for the first application of a BAHA. However DHM is correct that Doc is a candidate for the second application of a BAHA.

Doc, most of the surgery patients on this forum loose their balance nerve function on the AN side. If you take up paddleboarding, like Stoneaxe, or in other ways actively pursue restoring balance, you can adjust just as well as the other surgery patients here have done. They are not all paddleboarding or running marathons, but they can all pass for sober on flat ground in the daytime.

Steve

[leapyrtwins]

Doc -

regarding the BAHA questions.  I agree with DHM.  Get a second opinion.

BAHAs are usually placed slightly above the middle of the ear, but if there is a problem with your bones, they can be placed elsewhere on the skull.  Lori (lori67) has a BAHA that is placed towards the back of her head and it works great for her.

A TransEar might also be an option for you.

Jan

[cindyj]

Doc, glad to hear you're going to see Gaye!  I have seen Peggy, another vestibular therapist in her office, for my wonky head stuff.   Hope they have some answers for you! 

Will touch base with you tomorrow about lunch..

Cindy

(Slight hijack here...DHM, both my boys learned to ride a unicycle a few years ago.  It's quite a feat for anyone, much less someone with only one vestibular nerve - I'm so impressed that you're taking on that challenge )