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This topic contains 10 replies, has 0 voices, and was last updated by  lh48 5 years, 6 months ago.

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  • #7618

    lh48
    Member

    I was diagnosed with GBS in February 2008. My case was a mild one overall, but had severe facial paralysis. Today, I am still unable to move my entire face but have some movement. Has anyone had PT for their face, medicine or anything else to help re-juvenate the nerves in the face? Anything would be greatly appreciated. At this point, I know I should be thankful for what I have overcome but feel like people stare when I talk because my face does not completely move. Thanks in advance, and this board is extremely helpful.

    #78197

    Tina
    Member

    Hi,

    Did you receive speech therapy? The right side of my face was paralyzed and I had speech therapy a few times a week. I also did numerous facial exercises to rejuvenate the muscles, which seemed to help a great deal.

    Hope this helps.

    Take care

    #78199

    Lee Spurgeon
    Member

    I have to agree with Tina’s wise words. Speech therapists will help you out a lot. They are well qualified to deal with a whole lot more than speech including how to eat, talk, and keep from drooling. Talk to your primary care physician and ask him to arrange to get therapy.

    There isn’t much that will help nerves repair and regenerate except for time and the body’s own healing powers. Please don’t waste money on myelin powder and anything that claims to heal nerve damage. A couple of things that my neurologist said would help is a diet slightly higher in fat and vitamin B.

    I don’t think anything dealing with facial paralysis should be considered a mild case. I know some people in our local GBS community who have had a harder time with facial paralysis then some people who end up wearing APOs for the rest of their lives. Your face helps you eat, talk, and communicate. Facial paralysis is no small thing. On the plus side, there is a good chance that things will get better for you over time.

    Lee

    #78210

    Alma
    Member

    Hello – I have much of the same problems as you with the face “not working”. Yes, there are facial pt’s – my pt sent a printed sheet home with me to follow each day of movements for the face. And speech therapy too. I learned on my own to practice in front of a mirror. I learned two things. First and most important is that your lack of movement is not as noticeable to others as it is to you;) . Next – learn to smile etc a new way. Practice it to get a point that looks natural but perhaps not your former expression. In my case – that is just gone. For photos – I have learned that I can “push” my face with my fingers – into a better pose and it will stay for just a few moments – long enough to snap the shot. My face hasn’t worked the same since 1993. You are still into early days of healing. With any luck – you will heal more. Who knows? You have read the threads here. If it is repeated once it is repeated a million times ~ GBS stands for GETTING BETTER SLOWLY. Good Luck.

    #78217

    mdm
    Member

    Hi

    I didn’t get facial paralysis but my voice has been affected. I’m doing voice therapy and I would suggest you see a Speach & Language Therapist , they can give you exercises and advice. I remember reading a post where somebody who had facial paralysis used a special device to stimulate the face muscles and also had face massage.

    best wishes

    #78233

    lh48
    Member

    I never had PT, OT, Speech Therapy etc,,,,,,My neurologist insisted that I could/would get better on my own. I feel I have re-gained great strength in my arms and legs, but I am able to work those on my own with gym work outs and nice walks. My face is another story, and not sure what to do. Sometimes, I question if my Neuro knew what he was doing as I never ended up having plasmapherisis or IVIG either. It makes me nervous to tell yuo the truth! Thanks Again!

    #78254

    Lee Spurgeon
    Member

    IH48:

    The standard of treatment for GBS is IVIG or plasma pherises for all diagnosed cases if it is caught in the acute phase. If you receive treatment three or four weeks afterwards, it probably won’t do any good.

    Another standard of GBS treatment is Physical Therapy. It would be a very rare case where therapy of some sort isn’t required.

    Granted, I am only getting one side of this story, but I wonder if your neurologist is being your advocate, or is your neurologist trying to be a hero to the insurance company? I think you need to answer that question before you continue your relationship with this doctor. If you are stuck with this neurologist, then you need to ask why you weren’t treated, why you didn’t get therapy, and would this doctor treat their spouse the same way if the spouse had GBS.

    I have heard some doctors say that they won’t treat GBS until the person is unable to walk. That is asinine beyond belief. Nerve axons can and will be damaged as long as your immune system attacks your nerves. Also, the longer one goes untreated, the more residual effects you will have. I don’t care to think this, but there are just some bad doctors out there, and there are also good doctors who are more motivated to make the insurance company happy. Either way, it is the patient who will end up suffering.

    Okay, off my soapbox. You need to be your own health advocate. I hope and pray that you have the strength to be your own advocate.

    Lee

    #78316

    arlingtonal
    Member

    Mine was teated by a speech therapist using mild electric stimulation, and excercises on my own. I was in rehab hospital and had speech every day, so it was pretty intense. It must have worked becuase no one sees a half smile anymore. Keep at it.
    Al
    GBS Aug’05

    #78439

    Jupe
    Member

    I was diagnosed with gbs in May 2008 and I was paralyzed including my face
    and I had movement in my arms and hands. Speech therapy was helpful
    and I had physical therapy also. I was able to walk again in August 2008,
    and in December 2008 I still have some weakness in my face. It makes it
    a little difficult to eat, and hard to say words with b,p,and m in them.
    Facial excercises help regain your face muscles.Try to do the excercises
    for twice a day for 5 minutes. They involve smiling with mouth open or
    closed ,trying to suck on a straw,moving only top lip while gently biting
    bottom lip, and placing a lite wooden object between your lips and closing
    as tight as you can and hold.A speech therapist would show you the
    excercises and words to practise.HOpe I have been helpful to you.
    Laurie

    #78936

    jodylynn67
    Member

    8 years ago with GBS I had facial paralysis and was treated by an OT and speech therapist as well as using a TENS unit and by the time I walked normally again 13 months later to the day my face was back to it’s old self also. Most of it was better long before but everything was back in the end. Now with CIDP I have had some days where I think my face is going to end up paralized again but so far I have been lucky that way, it’s the legs this time to the point of being in a chair and I sometimes wonder which is worse!
    I hope you can get the therapy you need and my thoughts and prayers are with you!
    Good Luck to you!

    #79991

    pks
    Member

    lh48,

    I had MFS in 9/07. The left side of my face was paralyzed. In the hospital, the speech therapist recommended finding a physical therapist who did electronic stimulation.

    That’s exactly what I did once I got out of the hospital. I started out at 3x/week, and am now down to once every 2-4 weeks. The physical therapist also did massage and she does resistance training with my facial muscles (and gives me exercises to do at home – in front of a mirror for bio feedback).

    I think it has all helped. My smile returned within 3-4 months, I could blink my eye shortly after, and slowly the muscle movement returned. I would say the recovery of my facial muscles was at about 90% within 8-9 months. I think I’m at about 95% recovery.

    I’m sorry to hear that your doctors did not recommend any treatment. But maybe it’s not too late to try these treatments.

    I know how difficult facial paralysis is, so I encourage you to keep up your spirits, and keep looking for solutions.

    Please let me know how you’re doing.

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