Bell’s Palsy: The Mysterious Syndrome You Need To Know About

[newtheorymag]

drmonicatadros.com/the-myst...

[Indygirl25]

have you gone to this center?

[WILLOWBY]

This sounds great but it is in America. Unfortunately there is nothing like this in the UK.

[lorraine-t in reply to WILLOWBY]

There are some NHS specialist teams in the UK. If you are looking for treatment please contact me by e-mail : [e-mail] and I can let you know where your nearest specialists are.

[ml71]

I am 14 years out of Bell’s palsy. I live in the US. Is your center plastic surgery specific or do you do facial retraining? When I contracted BP the only facial retrainer I found was at the University of Wisconsin in Madison. I did exercises for a year but I still have synkenisis. I just had my second Botox treatment which seems to help make my mouth a bit more symmetrical but it does wear off after 3 months.

Any new info would be helpful.

Thank you.

ml71

[Indygirl25 in reply to ml71]

Hi- I wanted to let you know that I also went to the University of Wisconsin to see Jackie Diehls. I only had one appointment with her because she retired one month later.

I got BP 3 years ago, and also have a synkinesis. Since then, I’ve tried a lot of different things, but most recently, I talked/Skyped with Jodi Barth- she is amazing in her knowledge of facial palsy, and I believe knows more than anybody I’ve talked to in the medical profession.

Here’s her info:

Jodi Maron Barth, PT CCI

Co-Founder

The Center for Facial Recovery

1513107323959_PastedImage

6110 Executive Boulevard | Suite 460 | Rockville, MD 20852| Office:240.833.2921 | Fax: [phone] | facialrecovery.com

[ml71 in reply to Indygirl25]

Thank you so much for the info. I never went to see Jackie Diehls but communicated with her via email. I did the facial exercises on my own for a year. At this point the Botox does make a difference. I think my only option for permanent correction might be surgery and I’m not going there. I will definitely contact Jodi Barth. Seems like in the UK there are many resources available for BP. In the US they just gave me anti viral meds and steroids and said good luck. I did all of the research myself. Thank you again and good luck to you.

[Indygirl25 in reply to ml71]

I couldn’t agree more with everything you said. I truly believe that because there is no big pharma solution to Bell’s Palsy, and because the majority of cases resolve within 3-6 months, the United States isn’t interested in finding solutions or educating themselves about this condition.

The pharmaceutical industry in the UK- and everywhere else in the world- is practically nonexistent compared to the United States, as im sure you know. That means in other places of the world, they have to rely on more holistic treatments, as well as physiotherapy, and they’ve gotten pretty good at it.

When I went to see my neurologist one year after having had a Bell’s palsy, he told me that my nerve was dead. He actually said that as my muscles were spasming by my mouth and chin and jaw; I was dumbfounded by his ignorance.

It was at that point that I was convinced that the only one who was going to figure out how to best treat my condition was me.

So, like you, I became a researcher of all things dealing with the treatment of long term facial paralysis.

Anyway, sorry to go on and on, but I really believe Jodi will be able to help you. She’s been doing this for as long as Jackie Diels, but I believe she knows even more.

Lastly, I don’t know whether not you’ve heard of the Bell’s palsy clinic in the Netherlands, but they seem to really have a good track record as well. And they do not advocate surgery at all- unlike our friends at the Facial Institute in Beverly Hills.

Best of luck to you!

[ml71 in reply to Indygirl25]

Thank you so much for your valuable input. I did not know about the Bells Palsy clinic in the Netherlands but I will definitely research it and contact Jodi Barth as well. Are you still having nerve issues and paralysis? I would say I regained about 80% back. It was my left side that was affected. The left side of my mouth does not move correctly nor does the top above my left eye.

Anyway, thank you again and the best of luck to you. Keep me posted on your progress

[ml71 in reply to Indygirl25]

Sorry to bother you again but I wanted to let you know one of the best things I did and still do is cranial sacral therapy. It is done my chiropractor and it relaxes all your head and neck muscles. It feels so good, however it is not long lasting. I go every 2 weeks. I’m sure there are many massage or physical therapists that do this.

Anyway, good luck again!

[Indygirl25]

First off-you’re not bothering me! I really enjoy hearing about people‘s experiences and/or things they have learned on their BP journey to recovery. 😊

To answer your question, yes I still have mild paralysis- or to me it appears that way- I was told it’s not paralysis, but rather, that certain muscles are over compensating and not allowing the correct muscles to do their job. I also have continuous nerve issues- I feel continuous innervation, contractions and tightness around my mouth/lips/massester/buccinator/platysma. I can’t fully pucker or chew correctly on my left side. I would say I’ve regained about 80% back as well.

So funny- I’ve been getting cranial sacral therapy for the past 3 months! I also get acupuncture done once a week. What I’ve found is that not all acupuncturists and cranial sacral therapy is the same. I am seeing my third cranial sacral specialist and have finally found the best one I’ve ever had. She’s uses an approach that’s called ortho bionomy. It’s too lengthy to get into, but someone with this kind of training is paramount to find, IMHO.

My acupuncturist, as well, is top notch- and I’ve tried SOO many!

Here’s something interesting: Jodi Barth recommended acupuncture and cranial sacral for me to start with, and then after a few months, I’m to call her and she will give me exercises to do. So, you are on the right line of thinking!

Sorry to bore you with my details!

Please don’t hesitate to ask or tell me whatever you’d like- it’s never a bother!

[ml71 in reply to Indygirl25]

Hi. You are never boring me with details. I learn from them. I as well tried acupuncture along with electro stem in the needles but that really didn’t help me. I emailed the clinic of Jodi Barth but have not gotten a response. It might have gone to my spam. Keep me posted on your progress and I will do the same.

Best of luck

[Indygirl25 in reply to ml71]

Sounds good.

I’m glad you emailed them; they were really good with communication on my end, so I’d be surprised if they weren’t the same with you.

I feel that recently (last few weeks), I’ve made some improvement, and both my acupuncturist and cranial sacral person are in agreement.

Instinctually, I believe my improvements are due to (in order of highest efficacy): cranial sacral therapy that’s done within 2 days of receiving acupuncture, incorporating “cupping” both static and moving, the addition of a B complex vitamin, more attention to massaging my face and neck, and using Magnesium cream on the back of my neck and shoulders. I have to say, above all of the treatments I’ve listed, a positive attitude is by far the most important “therapy” you can do for yourself.

Look forward to hearing about your progress.