ANA Discussion Forum
General Category => AN Issues => Topic started by: amymeri on February 22, 2008, 04:20:01 pm
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Can someone point me to where I can find an easy-to-use House Brackmann scale for facial paralysis??
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Hi amymeri
Funny you should ask. I had the same question earlier today. I don't remember what the link was that I opened but I googled Brackmann Scale Facial Palsy. Several links popped up. I seem to remember the link was a UK reference to the scale. It gave the six stages. I was stunned to see that I'm a six. I'm guessing quite a few people on this board are a 5 or a 6.
Good luck with your search.
David
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Hello Amymeri
I found the URL listed below has a scale. Sounds pretty easy. I hope this helps!
Glenda
http://www.dundee.ac.uk/bells/index_files/hbscale.htm
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Thanks for the link to the facial paralysis scale. I was a 6 and now I'm a 3. Be nice to be a one again.
Jean
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Same here.. I was a 6+ .. for the first 12 months .. but now a 3 .. and would think I will be a 2 by next year at this rate.. will I ever be a "1" ... I dont think I will ever be 100% back to normal ... but over time I will be close....
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I'll always be a 6, but since my surgery to 'fix' my face, I feel like a million!!!!
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This started me thinking -- and of course asking questions again -- does anyone know the scale norm for post AN surgeries? And has there ever been a study to show average recovery times on the scale? I'm seeing mainly references to years now and only 2 and 3 point improvements. Maybe some of you mates who have been onboard for some time have a sense of that. I'm guessing that there a lot of ANers who come and go on this board over a period of time and might leave clues as to when they leave.
Any thoughts?
David
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Thanks everyone! That's just what I was looking for.
Immediately after surgery I was a 2, then for months I was a 6 and now almost 2 years out I would say I am a 3 -4.
So, that's progress. If I didn't have synkinesis I believe I would be a 2 but those contractures just pull my face out of whack...mostly the lower lip.
<sigh> Keeping my fingers crossed for an honest 2-3 someday.
Amy
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Hi David
To answer your question...I am just guessing here but I am sure that many, many people who recover completely (or nearly so) just move on and people for whom this is "fresher" or have more complex cases and need support tend to stick around.
There are definitely people who are doing really well here and stick around to support others (thank you to them!) but I think most people are here to seek information and support because they are having problems or have questions.
There are so many sequelae with this tumor...hearing, balance, headache, facial palsy, facial numbness, eye issues....that I don't think any two people have just the same constellation so there isn't anything "typical"...because we are all atypical.
I think that is one of the most frustrating things...there is nothing to hang your hat on, because everything is "maybe". Maybe you will have some of these issues....maybe they will go away....maybe in 2, 4, 6 months or maybe 2 years or maybe never.
Maybe, maybe, maybe. If we could just know what to expect and how long to wait then it would be a lot easier. On the other hand, if I had known that I was going to still be paralyzed 2 years later, I might've not made it through those first months of recovery. I needed to have some hope in those initial hard weeks.
Amy
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Maybe, maybe, maybe. If we could just know what to expect and how long to wait then it would be a lot easier. On the other hand, if I had known that I was going to still be paralyzed 2 years later, I might've not made it through those first months of recovery. I needed to have some hope in those initial hard weeks.
Amy
Well said Amy, Bravo
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Thanks Amy. I guess being the son of an engineer I'm always looking for empirical data and odds. I do think it would be interesting to give newcomers a realistic prognosis when they come aboard. Sort of a -- if you had a 2cm and your facial muscle nerve was stretched , the average recovery time was X. Or the average length of time to regain your balance at 100% was X. Like I said, I think it's the engineer genes in me that makes me ask. Maybe there's some sort of poll we could start so those signing on would have some realisitc expectations. If I had known reality post-sugery, I don't think I would have had such an agonizing first two months thinking that I did something wrong. I'm trying not to be cynical in all of this, but if surgeons can define palsy on a scale why hasn't someone developed a realistic recovery scale? My apologies for being so heavy here -- but I'm sensing that the AN realm may not be as patient friendly as we would like to believe. I've had my share of problems with the House administrative staff to the point where I felt like I was being processed through a factory. Like I said -- my apologies. Having a bad day.
David
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David - I think you have (this is) a GREAT question/suggestion - 'things that make you go HHHMMMMM'
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Hi folks,
This was the best $2.00 I spent
The Facial Nerve and Acoustic Neuroma: Possible Damage and Rehabilitation (AN4)
Tips and information for patients who have facial weakness or paralysis after treatment for acoustic neuroma. Includes an explanation of the facial grading system and some exercises that can be performed at home to improve facial tone. Updated: February 2007
Price: $2.00
https://secure.baxinternet.com/~anausa/for_sale.html
Has more detail than the web-link (however still a great weblink that I too have forwarded to others) on the House Brackmann Scale … and I refer to it often.
Keep moving forward,
4
P.S. I have gone from #6 to a 2.6 in the last 6 months… not sure where I’ll be when this recovery finalizes… nevertheless I am glad to have the “4/s� in my past… not sure what is going to happen with the “synkinesis trip� here I am on…
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David.
I am watching and waiting at the moment, looking at options as I have a small AN. I am waiting to receive a copy of my MRI to send to HEI for a consult. I have been seriously considering them as I have not had good vibes from the Dr. I saw here in SC. The statement you made about the administration at House concerns me. Is there anywhere where the Dr's staff and administration understand what the patient is going through? Do you feel you had good care there? It would be quite expensive if I decide to come there and I need to know if it is worth the expense. I have read alot of threads here and it seems as if the patients who went there have the least problems but as Amy said, that could be because the ones who recover tend to not stick around. I am just confused and trying to make the right decision.
Thanks!
Glenda
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Hi Glenda
I don't know what the experience would be like in other institutes. But I can give you my thoughts on House. As far as the surgical and medical team is concerned, I felt completely confident in their capabilities and assessment of my condition. They were very thorough. They were recommended by a highly respected ENT here in LA. And I had a successful surgery -- although I do think they should have been more realistic about my recovery period.
My problem with House stemmed from their administrative staff. The Surgery Coordinator wasn't helpful, did only what her job required and eventually when I pushed for more details about my financial commitment, she became argumentative.
Jump to present time -- I just had an admin sit on my disability recertification for two weeks. Only when I called to find out why the State didn't have it did she file the claim with a "oh I guess I should send that." That left me in a financial hole that wasn't needed.
I also want to mention that House does a lot of their surgeries at St Vincents Hospital. That was a wonderful experience. The staff there was very supportive and did what was needed to make me feel comfortable.
As far as House is concerned -- follow-up. I think highly of the medical team. Not so much for the administration. I hope that clarifies my reference. If there are any other questions you have about House and St Vincents, please let me know.
Best wishes.
David
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Hi David
I didn't mean to sound like I was negating your want/need for a recovery outlook or prediction that is realistic...I guess I am just coming from experience, knowing that they can provide recovery scales but whether or not they have any actual relevance to your case is a bit of a crapshoot.
So, for instance, everything I read and learned said that if you wake up with full function (which I did) the chances you will regain full function again (even if paralysis sets in later) are excellent, whereas if you wake up with no function your chances are not as good. Now in my discussions with people here I have heard of people all over the spectrum and most people didn't fit into that neat category. Many people with no function got good healing, I had fulll function and did everything "right" and have limited healing....
I was told MANY times that I would be recovered in 6-12 weeks...now 20 months later, no one is predicting anymore. So, those initial predictions got my through my despair after a week when my face was really bad...but turned out to be useless in my case.
I hate not knowing....but I think I would hate even more, knowing that things were hopeless.
Amy
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Hey Nancyann
I've been going down memory lane and reading posts from previous years. I noticed at one time you did started a recovery survey -- time, size, procedure, complications (stretched v cut). There were a few responses but it seemed to drift off. Since I'm at home with nothing but writing to do and I'm hitting writer's block, I may tackle this issue again. It seems that most active members on the board are still in some phase of recovery. But there are plenty of members who posted at one time, recovered, quit writing but their name was listed on some of the posts going back a year or so ago. Maybe if I got in touch with them, they'd be willing to share their recovery details. From that -- with enough input, I could develop some sort of bell curve that new members could take a look at when they joined on. I haven't been able to find anything like that -- maybe there might be some interest. So what do you veterns think -- is it something of interest?
Have a great Sunday -- it's raining and cold here in SoCal. And for you NASCAR fans, it doesn't look like it's going to improve any time soon.
David
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Hi David: I think it would be interesting to know of those AN patients who had paralysis post op, when did they 1st notice signs of nerve recovery,
& where are they in recovery now, how long post op.
I don't know how many people would respond who have left the site - some may or may not want to be reminded .....
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Nancyann
I may give it a try anyway. It's a game of numbers. The more who respond, the more viable the results. It may be helpful for newcomers as they join the discussion to get a look at reality.
Thanks. Have a great week.
David
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I had my surgery 5 years ago by Dr Brackmann at St. Viecents. I was a 5 on the scale and now five years later and a new voice on the forum I am a 2. I did a year of facial animation exercises with the help of Todd Henkelmann at the University of Pitt. I live in the Philly area and it was a 5 hour drive each way once a month. Last Monday I got a Transear. I was very pleased with all the doctors and staff and treatment at the House Clinic. It took about a year for all the paperwork for payment to get straightened out. So, even after 5 years I am still looking ahead! Sharon
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Hi Amy,
I get botox injections every 3 months for the muscles that won't settle down . The doctor injects into my neck muscle. It is covered by insurance. It takes about a week to see the results. I am hoping this helps you too.
Patti