ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: rosie_p on August 07, 2009, 12:49:02 am
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Hello everyone! This is my first post, as I just joined :) I had by surgery in 06 and like a lot of you I "woke up" with paralysis. Gotten much better and I can smile a closed mouth smile okay but open mouthed is troublesome. Immediately following surgery I felt like a warrior and had no problems/hangups about my face and proudly wore it like a badge! Now if someone I encounter even looks at me a little strange I turn into a blubbering mess and assume they are reacting at my face. I have just begun neuro-musc-retraining with accompanying botox and now that I am finally getting things accomplished I am in complete panic/dispair/depression about what might or might not lie ahead. It's ironic to me that now, having dealt with it for so long it is bothering me. I applaud all who have endured this!
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Hi RosieMarie and Welcome!
Glad you found us! Please feel free to let us be your sounding board or if you just need to vent! I have been paralyzed (complete) now for over 13 years - I have been lucky in that I have a WONDERFUL support group around me (& I guess i realize now after all these years, a little God given internal strength) that it truly doesn't bother me...maybe someday when I have time to stop & think about it! ;D However, I know what a struggle it can be and most folks have a LOT of peaks and valleys - that is OK as long as you are determined to come out on top!!
K ;D
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Hi RosieMarie and Welcome,
It's true about being the warrior right at the beginning because hey we survived brain surgery right?
But I find, living with it day after day after year gets a bit old. It still personally bothers me because it affects my speech and my eye is always a bother with the weight.
Did you have your facial nerve cut?
I still haven't reached the closed lip smile phase. The doc wants to wait 6 more months to see what my face does before he does more surgery stuff (I had the 12/7 nerve transposition 18 months ago).
Anyway, good luck with your journey. PM me anytime. There are a number of us with facial issues as you can see.
Also looks like you are still relatively young.
Keep the spirit and humor! And congrats on the closed lip smile ;)
Keep truckn,
'Maureen
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Nice to meet you Moe and Kaybo! Thanks for the words of wisdom/encouragement. You ladies are so strong and inspirational! I'm sooooo glad I found this site and cant believe I didn't sign up earlier!
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Rosiemarie~
I am 39 so we are "relatively" the same age...I had my tumor removed when I was 25...I would love to chat with you on the phone if you would like. I have unlimited long distance so i could give you a call if you want to PM me your number!
K ;D
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Hi Rosiemarie: I have complete paralysis on the AN side also, never got any tone/movement back (also had surgery in 2006).
I was just the opposite of you - I was so depressed with the paralysis until I had the T3 surgery (my before/after pictures are under
Facial Issues: Post Temporalis Tendon Transfer - today it's on pg.3 of facial issues - but that does change).
I AM happy that you can do a closed mouth smile & are having retraining & botox. Don't give up - there are some on this
forum who have seen results 3+ years after surgery.
& if you feel in a year or so (or whenever) you want other 'work' done, just google Dr. Patrick Byrne, he's at Johns Hopkins
& he gave me my face/smile back ! (my depression lifted after the T3 surgery)
I know this is a tough journey, I tell you, it made me much stronger !
Always good thoughts, Nancy
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Welcome Rose Marie!
DHM
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Rosie Marie~
LOVED talking to you today - look forward to chatting again! Nancy is the one that told me about Dr. Byrne - we both just LOVE him!!
K
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& 'Pattibobatti' told me about Dr. Byrne !
Great how this forum works, isn't it ?
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Yea, way cool forum.
Speaking of facial immobility, I had my 18 month follow up for my nerve graft and had discouraging news.
Was going to start a thread, but I'll just mention here.
I am so depressed because the doctor saw my upper lip barely twitch when I squeeeeeezed my eyes shut (the left one doesn't do so voluntarily).
I was hoping for the next phase- some type of lift.
But no he was sooooo excited to see the twitch and sign of synkenesis, and told me to come back in 6 months!
I know I'll feel sooo much better if I can get some surgery. I still have to be patient..... I'm tired of being the patient patient!!!!
I've had the facial paralysis for 3 f!@#ing years now. Granted there is movement on the left side of the face, but nothing around the cheek/upper lip.
I'm looking into acupuncture.
I cannot just sit here and wait 6 more months!!!!!!
I'll check some posts on acupuncture. I live near Seattle and need to do something.
I am feeling more tingling on the left face, but face it, it has been 3 years since the original brain surgery with nerve to nerve anastomoses and then the 12/7 graft. I don't really forsee a whole lot happening in 6 months.
Any ideas???????
OK I feel better.
Thanks ladies.
Maureen
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Maureen,
You don't have to listen to the doctor's advice if you don't want to. Most doctors are too optimistic and don't understand that after 3 years..............hello........it might be time to move on to something else. I understand your frustration. Get a second opinion maybe even go ahead and make the appointment with the doctor that would do the lift or whatever procedure that you are interested in next and see what he thinks. You deserve it. Don't wait if you don't want to. I think 3 years gave your face a fair shot at doing what is was going to do and I personally would schedule the next best thing but then again this is coming from someone who had surgeries (i.e.plastic surgery) 15 months after my paralysis. I'm not one to wait. Do what makes YOU feel good. Keep the faith and get another opinion.
Angie
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Moe,
The neuromuscular facial re-education clinic with Dr. Ng and Wanda Crook (from San Diego) at OHSU (Portland OR) should be up and running in the next couple of months- here. There is just some last detail typical “university bureaucratic red tape†they are having to get through.
I will post under “facial†once I receive word they are receiving and registering patients.
"SEATTLE" (thanks Steve) is a very doable drive from Portland. Tentatively our next Oregon ANA support group meeting (to which lots of Washington State people come to- and some are now carpooling) is booked at St Vincent’s for September 19th. I am sure it will be posted
http://www.anausa.org/scheduled_meetings.shtml
...as soon as all is confirmed with the leaders and the ANA etc.
I do not blame you for getting impatient… (Oh I can relate- this facial palsy is no walk in the park is it?)
Cyber HUGS
DHM :)
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Portland is a very doable drive from Portland.
Also very doable from Seattle. :)
Steve
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"SEATTLE"- OK OK I goofed. ;D :D I modified it in red. Thanks for your good editing skills there Steve. :)
DHM
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Thanks Angie and DHM for your feedback.
I'm in an awkward position, in that I am military. Got Tricare to OK the 12/7 at UW because my doc at Madigan I guess didn't want to do it or hadn't done very many of them.
So my referral to UW was for a lift of some sort but Dr. Rubenstein wanted to try the 12/7. Which we did. And he is still watching..... Doesn't quite want to declare defeat on this procedure-bad for the ego >:(
So I'm "in the system" there and they have awesome surgeons. That's why I'm probably going to wait the six months and maybe try some acupuncture now to move things along. But oh so frustrated.
If he doesn't refer me to a different surgeon, then I may end up back at Madigan. They may have a surgeon there now who does the lift (He was transferred to HI when I had my original follow ups).
So gotta go with the systems. It all works out one way or another, as we know.......
They have a facial nerve clinic at UW which he did not even mention but then again I didn't mention it ???. I'll try an email to him....and see how to get tricare to cover that.
I was just there but just was in a fog and a funk and didn't even think to check it out!
Anyway, thanks for the info on the neuromuscular facial re-education clinic, DHM. Hope to meet you guys in Sept. I'll put it on my calendar.
Maureen
Hoping I can get to the sept one in Portland.
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There are some surgeons out there who will do a T3 procedure right away following post-surgical facial paralysis, so that patients will have a smile and a more normal appearance while waiting to see if the nerve will regenerate. If it does regenerate, great. If not, the patient has not had to wait all that time.
I agree with Angie, seek a second opinion or schedule a consult for the procedure.
Sara
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Maureen: I'm glad you're feeling tingling - I never felt that. & since you have tingling, definitely look into acupuncture, it does try to open the nerve pathway.
I wish you all the best.
Always good thoughts my friend, Nancy
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Hello Everyone,
I am writing about my daughter Chelsea. At 17 years old she had a staged two part surgery in the summer of '06 for her large AN tumor followed by 28 treatments of Novalis radio-therapy on the 25%- 30% of the tumor left behind (too close to brain stem to remove). Lots of problems with her situation but she recovered well and only had a small quarter size numb spot on her face. In Jan. '09 they found that the tumor was growing. In June '09 she had another surgery, trans-lab, which gave them a better view of the tumor and they were able to remove 95% of it. They left 5% of the tumor behind that was on the facial nerve and left the nerve intact. She had facial paralysis right after the surgery. Her surgeon is seeing her every month and wants to see if there are any changes over a 6 month period. We have been advised by her 2 other surgeons not to do anything for at least 2 years. I was reading the posts here and saw that Nancyann had the T3 and some of you are checking into acupuncture. Can someone explain to me what a T3 is and how long should one wait to let the nerves heal before looking into acupuncture? We will be going back to UCLA to see her surgeon on Wed. Aug 12. I would like to discuss these things with him. I know she has to give it time, but it never hurts to have information that give you hope.
Michelle
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Hi Michelle,
Nancy and I had the facial nerve totally cut, so she opted for this tendon transfer surgery. I opted for the "nerve graft", taking part of the tongue nerve and grafting to the face nerve. I'm getting partial results and am starting to feel more tingling on my left side of the face, so am looking into acupuncture (I think!) until more surgery can be done.(hopefully!)
In Chelsea's case, the nerve was not cut and facial function does slowly return so it is important to watch closely for changes. You are so blessed that you have a surgeon who is seeing her every month over the next 6 months! Every doctor will have a different opinion. It is exasperating. So the "don't do anything for 2 years" was a stupid thing for the other docs to say. I swear these docs need to take a class in communication etiquette! And there is a lot that can be done. Surgeons are out of the loop on that one.
It's a scenario where you keep all options open and are aware of all options.
So may want to have your list ready for the doctor with questions such as:
"What are our options depending on how much facial function returns in 6 months?" See what he says. Hopefully she'll have full function back. DO ask what he thinks about acupuncture and facial massage.
BUT since she just had surgery, he may say to wait 6-12 months. I don't agree with the 2 year thing though. How bad is her facial paralysis?
Let us know what the doctor says.
Hope this helped :)
Maureen
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Hi Maureen,
Thanks for the reply. Her paralysis is complete on the right side (AN side). Her eye has both the 6th & 7th nerve paralysis. She can close her eye but not completely and not in unison with her left eye. Her right eye does not tract from the left to the right. It stops at mid-line but is starting to move over just a little (6th nerve). She has no movement on her cheek, mouth, nose, or eyebrow on that side. She was rated a 4 on the HB rating when she left the hos[ital. By the way, the doctors that told her not to do anything for 2 years were well meaning. They feel that she has a good chance of full recovery and not to rush into a 7/12 nerve graph surgery at the 6 month mark of recovery. Like many of those here on the board have stated, movement can start returning up to even three years. So, we'll see what happens. I will ask about the acupuncture on Wed. Thanks again for the information.
Michelle
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Michelle~
I have had both the 12/7 & the T3. The 12/7 didn't give me as much movement as i would've liked but did a great job of "reanimating" my face since it was hooked back up to a live nerve. I had the T3 in March of '08 with Dr. Patrick Byrne (Nancy's surgeon also) and absolutely LOVE the man - you need to Google him and the T3 - he is at Johns Hopkins. I understand that there are others doing the surgery now but he was the only one when I had it done. I got a wonderful compliment again this morning about how much better my face looks - it was such an improvement for me - I had the T3 at 12.5 years out!! ;D
They said that they left the nerve "dangling" originally but I never had so much as a twitch! Who knows...it is all water under the bridge now!
K ;D
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Hi Michelle: Like K said, the T3 can be done anytime - it's for chronic facial paralysis with no chance of facial nerve recovery.
Chelsea has age on her side - healthier nerves, everything. I wonder if that's why the docs want to wait & see if nature will take its course.
She can start Acupuncture anytime - I'd just give the doc a' head's up' first. Acupuncture does try to open nerve pathways, worth a try in my
'guestamation !'
Always good thoughts, Nancy
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I was also told to wait before doing any kind of "repair" treatment. They do that when they feel that they have preserved the facial nerve and they have all reasons to believe in the best outcome. My ENT surgeon told me most people wouldn't do a surgical intervention in a case like mine (where the nerve was preserved and stimulating at a low voltage) until at least two years out. It is frustrating and I have come across my doubts and anxieties about waiting so long since it seems some people have had treatment faster but I also know that even after long standing dysfunction/paralysis their is still much hope to be had!
Good luck to you and your daughter!!
Rosie