One year and two months post Bell’s Palsy.... - Facial Palsy UK

Facial Palsy UK

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One year and two months post Bell’s Palsy. Only 70% healed is further healing possible?

FLNJFL profile image
FLNJFL

Hello everyone, Most everything I have read on BP speaks about healing in 3-6 months or up to a year. I have not found anything speaking of what happens after the one year anniversary of this condition. Does anyone have any encouraging stories of having further healing after one year? If so, what things did you do or not do to continue improving? Most of my healing took place in the first 7 months. The past few months I have seen improvements, but only minor. Everything was delayed for me expect my eyebrows. I got full use of my forehead and eyebrows in a month. But my eye couldn’t blink for 4.5 months. My blink is good now. But my smile only works as a “closed smile”. If I try to show teeth I don’t show the teeth on my affected side and it’s asymmetrical. Also my cheek is not as full on the affected side. What do you guys think? I went to two doctors and they looked at me with a blank stare and said give it time. I live in the states. Here in Florida there is only one doctor I know of that specializes in this so I will make an appointment with him soon and hopefully get more than a blank stare. This is not fun. Any insight, tips, and encouragement will be greatly appreciated.

23 Replies

I’m 3 years, post onset. I would keep positive , as my biggest progress was after 1 year. It is a very slow recovery for me, but I had and still have physio/ treatment for pain. I go every 6 months now, and each time I progress. I still have to use an eye weight at night, but I can now sleep for naps without wearing it and am still holding on hope that I won’t need the eyeweight some time in the future, hopefully soon.

I have to admit that a lot of the progress is slower that at first recovery where the differences were more marked. Why not take some selfies over time to monitor it? You may be pleasantly surprised when you look back in time, even if you think you may not have got much further on.

I realise that everyone is different with BP, some people don’t fully recover. I was told at 4 months by a neurologist that I would never fully recover and the problems would persist for years. ( not helpful ) . At the time I was devastated , but in reality I have recovered about 90% on a good day ,and although the problems live on, most people don’t look at me any differently to anyone else.

At the end of the day, you may as well hang onto hope, as in my experience, it has served me better than believing the neurologist! Take good care of yourself, it will help recovery.

FLNJFL profile image
FLNJFL in reply to 25clai

Hi 25clai! Thank you so much for your reply. It is so wonderful to hear that you continued to improve after the first year. I haven't gone to physiotherapy, but I will see what type of physiotherapy I can do online during the quarantine and then in person once the bans are lifted.

And you are so right about the pictures. I recently took a set of pictures and compared them to pictures I took a few months ago and I could see a difference! I will do the physiotherapy and will stay positive :) I would be thrilled to get to 90% even if it took a year or two years, so hearing your story is very encouraging! Thank you :-)

25clai profile image
25clai in reply to FLNJFL

Glad that I have been helpful, and shown that you are probably not at a dead end with recovery. For more info, we have a great website in the Uk, with loads of info for patients , which may be helpful for you. There’s exercises and massage techniques, as well as other useful stuff.

facialpalsy.org.uk/support/...

FLNJFL profile image
FLNJFL in reply to 25clai

Thanks! I wanted to update this post to say that I found a great physical therapist who is extremely knowledgable about facial palsy. I will work with her remotely until the quarantines are lifted and then I will see her in person.

Surprisingly, I wasn't far off from my assessment; she rated me as 64% recovered. She believes I have the potential to improve up to 88% recovered and possibly even more over time. I will update this post in the future, maybe every 3-4 months or so to report my progress!

Hanz139 profile image
Hanz139 in reply to FLNJFL

Please can you share the details of the physiotherapist

FLNJFL profile image
FLNJFL in reply to Hanz139

Sure :-)

Her name is Jodi Barth at the center for facial recovery.

facialrecovery.com

Indygirl25 profile image
Indygirl25 in reply to FLNJFL

I have seen/see Jodi Barth, too! She and Gincy are THE BEST and soooo knowledgeable!!!

FLNJFL profile image
FLNJFL in reply to Indygirl25

Hi Indygirl25! I actually found her by reading your post :) Please let me know about your progress. Did you do all remote therapy or did you go to the center in the DC area? Have you seen gains in your recovery since working with Jodi and Gincy? Any recommendations or suggestions for me would be greatly appreciated!!!

Indygirl25 profile image
Indygirl25 in reply to FLNJFL

Hi!

Ok, I’ve seen Jodi and Gincy in person twice and have had about 3-4 telehealth appointments.

Yes, DEFINITELY have had improvement! My issues primarily are that I can’t pucker completely and my top lip doesn’t want to go all the way up when I smile- it goes up 90%- but that’s it. I also have MAJOR platysma issues and that’s probably why the other stuff isn’t working as well.

The most improvement I got was when I went there in person and they did the synkineedling. I actually had the plastic surgeon that they work with break up a lot of the facia that had formed adhesions around various places on my face and behind my ear. Before this procedure, every time I would smile, on the potty side it would feel like I was “hitting a wall”....come to find out this was where a lot of adhesions were. Once the adhesions were “released”, the movement was unbelievablely so much better!

On my second trip there, plastic surgeon did give me Jeaveau (sp?— it’s like Botox but doesn’t “move” as much, I guess) in my neck, but did so very sparingly, so I didn’t really experience the full benefit of it. But once it wore off, I did notice that it had been somewhat helpful. I was supposed to get another treatment of Botox, but then the world shut down- ha- so that didn’t/hasn’t happened. I think I may eventually have my nurse practitioner here do it instead of waiting to fly back to Maryland.

The stretching exercises Jodi has given me have helped SUBSTANTIALLY, too. If I don’t do these exercises on a daily basis, I feel it because things are a lot tighter. They also gave me a couple of “tools” to take with me to help with retraining and stretching.

I would try to make sure you either videotape your telehealth appointments or make sure you’ve got good instructions, because once that call ends, at least for me, I tend to only remember 60% of what she said to do!😝

I would definitely suggest going in to see her if at all possible. I really believe that that is the most beneficial type of treatment because she has the ability to put her hands on you and to ultrasound your face.

Where do u live and how long have you had Bells? What areas of your face are problem areas?

I’m so glad you connected with Jodi! Any questions you have- I’m happy to answer!

FLNJFL profile image
FLNJFL in reply to Indygirl25

Thank you so much for your reply this is sooooooo helpful!!!! I live just outside of Tampa, FL. I plan to visit Maryland later this summer hopefully.

Thank you for telling me which treatments you feel helped the most; I was wondering about the synkineedling and if it was helpful. I totally feel you on the "hitting the wall" of the smile. That's how I feel too. I'm glad to hear the synkineedling helped this!.....My big question is was it painful??? And did they recommend multiple session of the procedure to get the full benefit?

Currently, my main issue is that my left-side of my upper lip does not want to go up when I smile. My second issue is that my left cheek is not as full as my unaffected side and when I smile the difference is even more apparent.

The good news is that within the first month or two of my condition my forehead/eyebrow come back (I was diagnosed January 2019). It took 4.5 months to get my blink back, but it finally came back. By about 9 months I got about 90% control over my chin and lower lip. At about 6 months I started to see synkinesis in my face. The worse is when I flare my nostrils, but no one does this regularly so I don't really mind this, lol. But the problem I did get upset about was smiling and my eye wanting to close/tighten up. However, to my surprise this was been slowly getting better on its own over time with no botox or special treatment other than massage and stretching. I noticed from month 9-12 my eye getting better and then from month 12 to month 16 (now) I've noticed it go completely away...well, not completely but about 90%.

With my two main issues being my smile and my cheek I was wondering why I couldn't smile and Jodi did mention that the facia was sticking together, not allowing it to move. This was a breakthrough moment to me because everything out there wasn't making sense to me. Everything out there says that it's the frowning muscles not letting my smile muscles move, which I do believe is playing a small role, but I do not have a platysma issue so that theory never made since to me. I think my major roadblock must be the facia and Jodi's theory of this facia sticking makes 100% sense to me.....I guess at this point I will need to go to Maryland to get the synkineedling once I am able to :)

One thing I do want to report is that I have had two telehealth sessions with Jodi over the past month and with the techniques she shared I have already seen some improvement! It's amazing that this has started to happen already. I'm feeling hope now and for a while I was starting to lose hope. It's great to hear that you are at 90%! That's where I hope to be in the future :)

Big Questions:

Does synkineedling hurt? She mentioned that numbing medicine may be given, did you receive any? Even if it did hurt I'm imagining it was worth it though.

Does only the plastic surgeon do the synkineedling or does Jodi do it too?

How many days did you go to the center when you were there? Did they do the needling on more than one day?

Do you recommend a hotel to stay at and do I need to bring a family member to care for me (under medicine and can't drive, etc.)

How far are you from DC? Do you think one more session will be enough to get to where you would like to be with your smile?

I'm so glad we connect!!!

FLNJFL profile image
FLNJFL in reply to FLNJFL

Thank you Indygirl25 for reaching out to me through the chat!

And to give the group an update....I have had 2 telehealth appointments so far (over the past month) and they have been very helpful! I will have a third appointment in June. I will give another update in this post in the near future.

Everyone take care :)

ml71 profile image
ml71 in reply to FLNJFL

Sorry. Did not read your replies and I see you have conferenced with Jodi. They are a great resource and their exercises have been most helpful

FLNJFL profile image
FLNJFL in reply to ml71

I’m glad to see that I’m on the right track :) it’s nice to know that her exercises helped you. I feel that they are helping me too.

I am 16 years out of BP. I would say I regained about 80% back. My smile is not symmetrical so I have had Botox which helps a bit. I also have synkinesis. I live in the states as well. There is a place called the center for facial recovery located in Rockville, MD. I have had several teleconferences with them and they have a lot to offer. You might give them a try. There is not much in the states unfortunately. Good luck!!

FLNJFL profile image
FLNJFL in reply to ml71

Thank you for your message. I was wondering do you get Botox on the unaffected side to make a smaller smile or do you get Botox on the affected side in overactive areas? My therapist said that Botox might be helpful but I’m still in the deciding phase. Hearing your experience with Botox would be helpful!

ml71 profile image
ml71 in reply to FLNJFL

I’ve had Botox on the unaffected side of my mouth. It does make the smile more symmetrical. Jodi (from facial recovery) recommended some areas as well. I also got some above my affected eye (in my case left side). I felt it made the synkenisis more pronounced. Also got some below my lips on right side which was good. Jodi can recommend some areas to try as everyone’s facial palsy is different. It’s also important to find a good Botox person. Mine is awesome. She is a nurse practioner and did some major research about Botox and is very familiar with BP. Good luck to you!

FLNJFL profile image
FLNJFL in reply to ml71

Thank you! This is good to know. Each persons experience is unique but I think some things are similar like if the persons left side upper lip isn’t moving up (my current issue) and Botox is put on the unaffected side to reduced the right side upper from going up high that would create more symmetry. So I’m glad to know that worked for you. If I have it done I think that is what I would feel comfortable with getting. I think I would be too nervous to paralyze the paralyzed area except for maybe my neck.

ml71 profile image
ml71 in reply to FLNJFL

I also had it in my neck per Jodi’s recommendation. When I move my mouth the artery in my neck kind of pops out. The Botox really calmed all of that down. You kind of have to experiment a bit. The good thing is that it wears off in approximately 3 months so if it doesn’t work you don’t do that area again.

I wanted to give an update on my progress...7 months since my last post went by fast. In my intake session with my physical therapist back in the spring of this year I was graded as 64% recovered. After working with her for about three months I was rated again and was 79.5% recovered.

I still have a ways to go but I'm happy to see progress! The most helpful thing is daily (at least 2-3 times a day) facial stretching and massage. I believe at this point I'm at 80%-85% recovered, but have not received an official rating just yet.

I plan to see her again in person, but this probably won't be until the spring of 2021. In the meantime I will continue to do the exercises and will think positive. Further healing is possible!

FLNJFL, how’s your recovery now? I would love to hear encouraging news. I’m at 8mo now and still have a crooked smile, my rt eye closes when I chew or drink and my neck pain is quite uncomfortable. I started Accupunture from the start & have reminded consistent & have added massage. I will try Reiki this week. I wasn’t prescribed prednisone in time so I didn’t receive the recommended care at onset. If I can learn what to do to be more comfortable & to heal I would be grateful.

FLNJFL profile image
FLNJFL in reply to Mrs_Ballroom

Hello Mrs_Ballroom. I love ballroom dancing by the way :) I haven't noticed any additional recovery since my last post, which was about 2 months ago, but I am slowly improving over time. Currently, my main focus is stretching in my physical therapy program. It sounds very simple, but overtime I believe the stretching retrains the muscles to act in a more normal way. My main issue is my crooked smile and a lost of volume in my cheek and the stretching has helped with this, but I know I will need further help to improve my smile.

My plan is to visit The Center For Facial Recovery in Maryland and have a procedure done called IBBS. They recommend staying for a week. I will most likely go in the late spring and will post an update on my experience/ progress.

If you are far from Maryland you might want to check out a book they recently released on Amazon called "Fix My Face". It is a wonderful book with new insights on this condition that I haven't seen anywhere else. There is also a section of physical therapy that can be done at home in the book.

One thing I would say is you are still early in your recovery where you can retrain your muscles easier than if it was years down the road. I had eye issues (eye wanting to close when I smiled) that started at about the 7th month. I consciously focused on only doing movements big enough that I could make an expression, but not too big that my eye would close. I sometimes would even hold my eye open with my hands while I chewed to retrain my eye to not move. I kept this up and by about 18 months post Bell's I no longer had an eye issue. I hope this gives you encouragement that you can get better :)

Thank you for taking the time to respond. Since reading your conversation thread I set up a televisit with Jody. I’m excited to meet with her and learn more ways to help my own recovery. What is IBBS? I guess I can ask Jody... I also plan to ask about Botox for my neck as it’s quite uncomfortable. I bought a massager recently and am hoping to find some relief. I live in CT (born & from central FL a few hours out from Tampa) so a drive or train to Maryland wouldn’t be difficult. Regarding the eye training, that does give me encouragement. Thanks for sharing. Also I will order this book today! You seem to have a positive attitude. I did until recently when I started having doubts that I will ever see my smile again. You have been a great encouragement and I thank you for the renewed hope I have. 🙏🏼

Omg small world! I was born in Tampa, raised in NJ, and currently live in the Tampa Bay area. That explains my screen name FL,NJ,FL :) The Center has some interesting theories about this condition, one of them being that when the face heals it can create fibrotic tissues that "locks" the face into disfunction. IBBS is a procedure the utilizes ultrasound technology to pinpoint the exact location of disfunction, then the doctor breaks up the fibrotic tissue. They also have a less invasive (the needle doesn't go as deep) procedure called Synkineedling.

I'm so glad I gave you positive encouragement :) I remember 10 months into my recovery I went to a second doctor for another opinion and she told me it wouldn't get better and to just "live with it". I went home and cried for days. Then I got mad and said that I wasn't going to let someone tell me what me body could or could not do. I worked on my face with retraining and in time I fixed my eye to about 95% recovered so it is possible to get better! Also, my smile has improved too, but is still a work in progress. I haven't tried their in-office procedures yet so I'm excited to see how they might help.

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