Bell's palsy - synkinesis - live in Norway, need advice and treatments in the UK

My daughter , 19 years old, has had Bell's palsy on the left side of her face for 1 year. Of the treatments she has had just acupuncture for the first 3 months on our own initiative. We live in Norway. The doctors in Norway don't reccomand any physio/electro/massage/acupuncture treatments, There is no competent medical persons educated to treat Bell's palsy in Norway, there are just surgeons. So my daughter can not get any help here except surgery. We do not wish surgery without trying some other methodes.

The first sign of improvment came after 3 months. It happened big improvement during a short time (sommer vacation 1-1,5 month). After that I can not see any progress. I think that the 60-70 % of movement is back.

She got synkinesis short time after the improvement. She says that when she wants to close her left eye, the lip-area on the left side of her face is mooving upwards etc. Her left eye got smaller then the right one, and when she smiles or gapes, her eye closes completely or almost completely.

Is it possible to get a consultation (and whwrw) with a proffesional therapeuts in the UK who can take a check of her and give her advice about massage, stretching and relaxing in order to manage the synkinesis?

I am thankful for your answer!

Best regards, Gloria

20 Replies

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  • Hi Gloria,

    As someone who has bells palsy right side and presented at 13 yrs old I can empathise with your daughter and praise you for seeking the best possible help you can get for her.

    I would have a look at the facial palsy uk web site ..www. facialpalsy.org .uk. There is so much information on the site I am sure you will find this site very helpful.

    In terms of a consultation I would email facial palsy uk directly and get the advice from the staff , I am sure they will be able to direct you and your daughter to the correct specialist.

    Sending you my best wishes. xx

  • Hi and thank you so much for your advice! I will do it! I have not find this web site beføre now. In Norway there is no any information about this, and the doctors do not know anything about the treatments.

    Have you got help with the Bell's palsy and synkinesis in the UK, and has it helped?

    I wish you the best!

    Gloria

  • Hi Gloria

    I would echo the above advice. I have had right side BP for just over a year with exactly the same type of synkinesis. The most helpful thing for me was to see a neuro physiotherapist as she deals with all kind of facial paralysis including BP. Started seeing her in Nov 2016 and face has improved greatly with small but focussed exercises - over 90% better now.

    All the best for your daughter's recovery!

    Maxine

  • Hi and thank you very much for your answer! It's very nice to hear that you get so much better!! :)

    In Norway there are no any educated therapists for BP. Could you give me the name/ telephone number/web/email of your therapist/clinic if it is allowed here on this site?

    I have read now that gently massage an streching of facial muscles helps very much, and that the best is if you massage your head, neck and face twice every day for 5-7 minutes. I dont know if it is alowed to write here where I have found that information?

    Best regards!

    Gloria

  • I think it would be helpful to try and look at facialpalsy.org.uk as suggested- this has lots of useful information and you can ask questions.

    All the very best.

  • Hi there,

    Google youtube for the videos from Quee n Victoria Hospital, East Grinstead for a demonstration of how to do the massages and the stretches. I find it very boring to do but when I do them every day the tightness and pain in my face gets better. You should not do them too early. I started about 4-5 months after th he Bells Palsy happened. The synkenesis was beginning to set in by then as the nerve healed and my face was becoming quite tight. The massages and stretches are definitely helping.

  • Hi and thank you for your answer! Those videos an tecnics seem to be very good. We will start with them. In July we will start with some 'treatmants' at a clinic in Netherland (Crystal Tuch Clinic) where they lteach you to train your brain to use all mucles propriately. It is a kind mental training. They reccomend the massage and streching you mention and the 'concentration training' every day morning and evening. You can read about that on internet and there are some videos on you tube. I will update you if this mental concentration training helps.

  • Hi Gloria,

    I am living in the Netherlands and had Bells Palsy for 6 month now. There are some physiotherapist who can help in recovery and I am going to an acupuncturist as well. Still against all these treatments I started to develop synkinesis same as your daughter. The doctor suggests botox which I will try in 3 month time, but till I still hope for some recovery. I was wondering how your treatment went in the Dutch clinic you mention as I am planning to visit them as well. Hope your daughter is already getting better.

  • Ok, thank you very much! I read everything I find, but nobody reccomend a place or a name of some thetapeut I can contact. But I will continue the reading.

    Best wishes to you!

    Gloria

  • Please look for my response up there, I think the Bell's Palsy could be caused by Lyme Disease - the tick bite.

  • Hi Maria, I have read your answer bellow. My daughter tok blod tests for Lyme Disease (Borreliose) several times, but she doesn't have any bacteries. She got streptococs in the meantime and urinweisinfection and she got antibiotica for that. It hasn't affected synkinesis. I didn't know that it can be difficult to diagnose Lyme. I will read more about that. Thank you for your answer, I will maybe conctact you later. Best regards to you!

  • Hi Gloria,

    I am so glad that you have had a look at the facial palsy UK web site. I would email them and ask for a list of professional and clinics that would suit your daughter. You would then be able to make an informed choice as to who to see and where to go.

    They are very helpful and have a wide range of knowledge.

    In terms of my treatment, I presented with Bells Palsy some 37 yrs ago and there was no treatment, a bit of physio . I then spent a life time of being told there is no treatment. That was until the charity facial palsy UK popped up and through them I became aware of different treatments. Sadly treatment in the UK for Bells palsy is very different depending where in the UK you live. Sadly I live in a area where treatment is not given.

    I have paid for a session with a special facial therapist , who examined me and gave me specific targeted exercises to do. I do them 4 times a day, without fail.

    My improvement has been slow but then I have had facial palsy for along time so getting things moving again after such a long time is more of a long term matter.

    I would also just keep a check on the twitter account of facial palsy uk they have bits and bobs of information and related subjects.

    Sending you and your daughter my very best wishes xx

  • Hi and thank you a lot!

    It sounds very good that you make an improvement!!! :))) I'm glad to hear it!!! I hope really that there is a hope now for all people with these new theories/ researching and treatments.

    I am still reading about BP as much as I can. There are many good advices on UK-web sites that I didn't know about. I have sent some emails to some support web sites and therapeuts in UK about a consultancy/treatment, but I have not receive any anwer from any therapist yet. I hope that someone will answer me and make an appointment with my daugher.

    I believe now that the massage every day, 2-3 times, strethcing and relaxing of the facial muscles also every day, can eliminate synkinesis and recover mucles. I will make a plan/calender to my daughter with a program for these things. I will also make a list og the food/drinks she has to take every day to get stronger immunitet: 1 small piece of dark chocolate, 1 tea spoon honey, a little bit cynamon, ginger tea, olive oil/ fish oil, onion/garlic, vegetables, fruits, white meat etc. And tomorrow I will buy a fine massage oil (etheric) that smells relaxing, so she can use it to massage before sleeping.

    And if somebody answers me, I will take a tour to the UK with my daughter for the exercises you mention.

    I wish you the best results and 100% recovery!!

    Gloria

  • Hi

    Looks like your daughter will be getting the help and advice that she will need. With Bells Palsy progress can sometimes be very slow, patience and more patience is need. I wish you both success xx

  • I have got answer from a clinic in Netherland. They need some pictures of my daughters face, så they will answer all my questions. They have a theory that synkinesis is possible to heal even meny years after onset. They recommend massage every day as long as you are recovering. And they show you some exercises you should do 3 times every day.

  • Hi

    Great news !!!!!

    I hope your daughter sees great progress and I hope she has great results

    xx

  • I hope so! I wish all people to get healthy . Just keep motivation.

  • Gloria, I thought acupuncture and moxibustion from a China trained practitioner worked for my facial palsy after a brain tumour. Both seem slightly bizarre to western minds but I believed in the practitioner which I think is important. Do not think improvements stop - I think it is like climbing a hill - get to the top and there is another ridge to aim for no plateus in improvement. Keep at it the improvements in my case got smaller and less viable you just had to look harder to spot the improvement.

    I had to contort my face to get my eye to blink. Now with a bit of concentration I can do it without to much of a grimace. I used to slap my face gently sitting in traffic jams to stimulate the nerves, and I have started doing it again [plenty of jams in Edinburgh] this method is my own idea, I do not say it works but at least you feel you are trying to do something!

    I suggest you tell your daughter never give up. Looking in a mirror [I never used to], it is hard to spot my palsy, until I grin and it is a bit lopsided. if you want me to tell you more normanthornton@croffoot.net

  • Hi and thank you very much for your answer! I have read it and it is interesting! I will answer you properly in about 10 days when I am back at home (I am on the trip now). Best regards, Gloria 😃

  • Gloria, I just joined here to respond your question. Your daughter could have LYME DISEASE. The Bell's Palsy is one of the symptoms. I have friends in Norway with Lyme Disease, they call it Borreliose, because the bacteria that causes the infection is named like that, while the name Lyme comes from a city in the US and Europeans don't want to use that name.

    The point is I had Bell's Palsy for long until I had antibiotic and anti-parasitic treatments long term. You need to see if your daughter responds well to antibiotics and see if she has more symptoms?

    Unfortunately testing for Lyme Disease is difficult, I think Germany has good Doctors that could be of more help. Meanwhile I recommend you to get in Facebook and look for Lyme Disease organizations in Europe that can help you to test your daughter before doing any surgery.

    I would love to know if you got this message, you can look for me in Facebook too let me know you are the person from the forum and i could try to get you in contact with people in Europe. This is my FB wall facebook.com/LYMEMJ

    May you all get better.

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