House Brackmann 6. Pictures.

[LADavid]

Wow, Angie.  The pictures are amazing.  Thank you for posting them.  I've followed your problems and frustrations and disappointments over the last year.  And I could only imagine what you were going through.  Now I see first-hand.  I too believe (at least from my own perspective) that most non-Aners don't realize what we with facial issues deal with.  In my case, I'm older -- it really doesn't mean quite as much to me (except eating in public). It's just something to deal with.  But for you and those who are young like you, I can only image the frustration.  Your last picture looks great -- and it's good to finally see Crookedsmile.  It's pictures like those that give others encouragement.  Thank you.  Keep on improving.
David

[LADavid]

And by the way, for someone who is going the every three months Botox route -- thank you.  It's given me encouragement to know that there is hope and what I am going through isn't just an exercise.

[Lilan]

Crookedsmile, first, I would like you to change your name. Fabulousbabe perhaps? 

Seriously, you look great. You've obviously been through a lot the last couple years and I hope before long you're seeing this time period in the rearview mirror.

(Everyone seems to know your story but even after some searching I don't -- was your nerve cut and grafted? Or did you have post-surgical paralysis but an intact nerve? It might help newbies who come upon the photos of your progress to know the backstory briefly.)

[CROOKEDSMILE]

David, I'm glad that you are getting relief with the botox. Thank you for the kind words.

Lilan, I had hemifacial spasm due to nerve compression of the facial nerve. They did a microvascular decompression via retrosigmoid similar to AN surgery. I woke up with complete facial paralysis and a paralyzed swallowing nerve. (went in the very next day for 2nd brain surgery to see if they could relieve more pressure on the facial nerve since the paralysis was so severe) My facial nerve was intact but stretched. All of my research that I did said that if you wake up from surgery with complete facial paralysis (House Brackmann 6) that the prognosis for recovery was not that great and is never a complete recovery. That was true for me as I am a House Brackmann 2/3 at 21 months.  A person with delayed facial palsy even if it turns into a full paralysis several days later or even weeks later will usually recover 100 percent. I can send you the article that states this if you are intersted. Thanks so much for the compliment by the way. You are very sweet.

Vonda, Hope you are well! You are the brave one my dear. Probably the only woman alive that breastfed her baby while in the ICU immediately after brain surgery. Amazing and a great mother.

Angie

[saralynn143]

Angie and I both had hemifacial spasm. HFS stinks. Really, it reeks. However, it is not as bad as facial paralysis. (David, are you paying attention to potential adjectives here? Stinking, reeking, or perhaps my all-time favorite, odoriferous?)

When I went into surgery, I thought that delayed facial weakness, which is fairly common after HFS surgery, would mean recovery, but that immediate facial weakness meant you would stay that way forever. When I woke up, I knew without being told that my face was paralyzed, and I was immediately depressed. It did not help that my surgeon kept telling me he had a "bad feeling" about my nerve.

However, at 10.5 months post-op I have recovered to a weak HB-3. My facial nerve specialist told me I could expect to recover to a 3, but my goal is a 2 and I believe I will make it. If it takes 3 years, that's OK, it'll still be before I hit 50.

I think it is important that folks understand going into surgery that there CAN be recovery from facial paralysis, and even if not, there are other procedures that can help. I was so relieved to learn about the 7-12 jump and T3 surgeries.

I'm rambling now and should head for bed. Have a good night and a pleasant tomorrow.

Sara

[LADavid]

Sara
Got the adjectives.  There is one ahead of odoriferous.

Hey guys.  There's something here that Angie just did and Michele did and Debbi did and Nancyann did and Kay did... I may be missing someone. In posting your photo progress you all showed hope for the rest of us who are dealing with palsy and synkinesis.  There is definitely different degrees of it but there is progress.  And for people like me who get tired of hearing "patience" from PTs and doctors, examples like this make me want to have patience, and keep at it, and go to PT, and do exercises, and put up with needles in the neck.

Phyl, Jim, Steve -- is there a way we can round up all these examples in one grouping to direct facial palsy newbies to?  To demonstrate there is hope and that as demonstrated -- it just takes time and dilligence.  And maybe others will jump on the idea and keep a photo journal of their progress.  I'm going back through my pictures and see what I can come up with.  Just a thought.
David

[sgerrard]

Phyl, Jim, Steve -- is there a way we can round up all these examples in one grouping to direct facial palsy newbies to?  To demonstrate there is hope and that as demonstrated -- it just takes time and dilligence.  And maybe others will jump on the idea and keep a photo journal of their progress.

The simplest thing is probably to start a new topic, and put links to each of the progress topics you mentioned. We could also copy a photo link or two from each series. We don't really have the means to create a sub forum or anything fancy like that. We could merge them all together into one giant topic, but I think that would be pretty messy and would lose the thread of the discussions.

I'm happy to take a shot at it if a new topic with links to the progress topics sounds like it would work.

Steve

[NancyMc]

It would be a huge benefit to me to see progressive photos of others who had little facial weakness immediately post-op but then declined in the days and weeks following and ultimately recovered.  I am keeping a record as my legacy.   

[saralynn143]

Be sure to include Jeanlea's "Facial Progress" thread. I have sent the link for that thread to lots of people to show that progress can be slow, but spectacular.

Sara

[Kaybo]

I am still working on getting my "before" and "after" pictures from Johns-Hopkins.  I wanted to put them up here at 1 year, but I had to get them.  Then when they did send them, they were just the "before" and they sent them thru the regular mail -I don't have a clue how to scan - even though I think I have one!!  They had LOST (never uploaded apparently) the "after" pictures that we took in July when I went back there.  I am in the process of taking some for them because they are redoing their website (b/c I suggested - well, I'm sure not just b/c of me- it b/c I told them there were a lot of people accessing it from this site and the complaint was that it was the same pics that had always been there).  My intention was not to be on the website - just relaying comments I heard here, but they have asked if I will be on there.  I have sold them that I would be honored, but they didn't have to committ until they saw the "after" photos to see if it showed enough progress.  (you know I lost some with all the aftermath!)  I wonder if Nancy will be up there too??  I think it might be good to have links to that site as well as anything pertaining to the 12/7 (or 7/12) or any other form of treatment...Also, Lori is having incredible results from the 12/7!

K

[leapyrtwins]

Lori is having great results from the 7/12 jump surgery.

Any before and after pics, Lori?

Jan

[NancyMc]

Didn't Lori post a series about a month ago?

[leapyrtwins]

I don't think so.  I know I'm getting older by the day, but I seem to recall her hat picture, which showed the great post op results.

But I'm not sure I've ever seen a before picture.  Someone please correct me - or point me to the thread - if I'm wrong.

However, I do know that Lori is extremely shy, so maybe we'll never see them 

[Darlene]

Angie,

Thank you for the posting, as someone who has not had treatment yet, I did not truly realize everything someone with facial paralysis and swallowing difficulties endures  (sometimes a picture is worth a thousand words) nor that you can make such great progress from that point.  In my case you accomplished your goal of providing additional education and I am grateful for your bravery in posting your pictures because quite frankly, you didn't have to. 

Thanks,
Darlene

[cecile k]

Angie:

You are amazing! Thanks for posting those pictures to give so many others the encouragement they need.

Cecile