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Bell's palsy 9 weeks no recovery

Posted , 12 users are following.

michlove1985
michlove1985

I was diagnosed with Bell's palsy 9 weeks ago, following an ear infection, I was given steroids from the onset, referred to physio, which I'm still waiting for, I have been doing exercises daily, I went to the hospital yesterday for a check up and was very bluntly told by the doctor, that he thinks, because I've shown no signs of improvement, that it will be permanent. After breaking down, my husband stepped in and started questioning the doctor, and to be honest he had absolutely no answers. Is there any one else who is in the same position as me? I am really struggling at the moment to see a light at the end of the tunnel

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  • woody337
    woody337 michlove1985

    Posted

    Hi Michelle: Everyone says don't worry it will get better - but at 9 weeks it feels really impossible, I know. I am over 65, which brings a reduced chance of recovery - I'm almost 26 weeks in now - and I am recovering!

    I had problems blinking, breathing through the right nostril, smiling, eating and drinking.  The only follow up for me was for my eye - checks every month or so.

    The first beginnings of healing were at 17 weeks - the corner of my mouth began to turn up. Now I can intentionally smile a bit, though the cheek muscle tends to cramp.  At 21 weeks I began to get better control of my eye; still can't blink or screw my face up but it is improving.

    Last week I went to see a neurologist (I have an acoustic neuroma still being monitored) and he was the first medic to really take an interest in my recovery. He is arranging appointments for electric stimulation - hooray.

    I think it is very bad that there are no info sheets available for patients (and doctors, judging by your experience!). They don't seem interested as they have little input in assisting your recovery BUT although it has taken me a long time to get this far it is highly likely that you will get a good recovery - the general odds are very good indeed - even for an OAP!

    It may be a long tunnel but the light will be there and keep coming.  I can speak more clearly, nearly blink and mostly drink without dribbling - so suggest to your doctor that he spends a bit of time on this site then he can be more realistic and upbeat with his diagnoses.

    Good luck!  Hope to see you writing about your recovery soon - together with timings - to help us all feel more positive!

    • michlove1985
      michlove1985 woody337

      Posted

      Hello, thank you for your positive response, it's nice to finally hear from someone who ACTUALLY understands, I find it really frustrating when everyone around me tells me not to worry and it will get better, but unless they've been through it themselves they have no idea what it's like. Myself I'm 30 and in fact I woke up on my 1st wedding anniversary, with Bell's palsy. I have complete paralysis on the right side of my face and neck, and apart from the swelling decrease, nothing. I'm hoping to start physio next week, maybe that might kick start something, I do seem to get a few cramps here and there, so I take a little comfort, hoping that's a good sign. I just wish more was known so we could actually get answers to the vast amount of questions we have. Lovely to hear from you thank you immensely for your support, and good luck in you journey.

    • woody337
      woody337 michlove1985

      Posted

      Don't get too enthusiastic with physio/exercises/massage - even though you really want to feel you are doing something. The nerves as they grow can be quite delicate - so little and very gently.  A warm (not hot) wheat bag can be a real treat and will bring healing blood supply to your face.

      PS put your hand over the bad side each morning and smile in the mirror - it's still you in there!

    • donna07054
      donna07054 michlove1985

      Posted

      Hi Michelle , I woke up 3 years ago after only being married for 4 months unable to smile, the entire left side was not working, i too was given steroids, anti virus meds an pain killers , i had so much shooting pain in the back of my head in back of my ear, i too have had all your symptoms, and i too was told oh it dosent last long, but it took 45 days to just get back to work, the pain was insane, my doctor also did not have much information, but I decided to go to the massage therapist, she is a RN and did alot research to help me , she would give me facial massages to help stimulate the nerves, and before long I was singing also another good exercise, . Too this day I often worry that if I get stressed out it would return. 3 years later and no one can really tell it ever happened , except for me, I still have issues with loud noises and my pictures look different. I wish you the best of health and quick recovery, there is alot of us that had this happen to them. Please continue to exercise your facial muscles and try a experienced massuse. Good luck, 
  • Barnie
    Barnie michlove1985

    Posted

    Hi Michlove

    Let me reassure you that at 9 weeks you are really still in the early stages and you ahave plenty of healing time ahead.  you will find that doctors have little experience of this mystery illness and see few cases in their working life so have no idea how long it takes to get better.

    I am speaking from experience here as I had Bell's about 11 years ago and, like you, despaired when I got to around the three months and had seen little recovery. i went on to recover and certainly at 2 years had recovered enough that you could not really tell anymore  Some people recover quickly (this all depends on how severely your cranial nerve has been affected) and others can take up to 2 years and even longer.  Even after all this time I still see little things working better and recovering - they are not big landmarks but nevertheless still righting itself.  I haven;t gone back to a 100 per cent as I was before but you would never know from looking at me.

    Hopefully, for you, you will see 100 per cent recovery as you really have so much recovery time left.

    I know how awful this illness is but it will get better and you will smile again.  The thing about this illness that doctors do not take on board is the psychological aspect as it causes such anxiety and depression from the sudden change in your looks.

    Keep positive and for sure this doctor that you have seen has got it wrong.

    Hope this has helped you a little

    • michlove1985
      michlove1985 Barnie

      Posted

      Thank you for your supportive reply, I think it's really difficult to get people to understand, when they've never experienced Bell's palsy. I have a good support network behind me, but again no one with first hand experience. Before I came down with it, I must admit I'd never even heard of it myself, but for me it couldn't have come at a worst time, (the time when absolutely everything happens at once). It's good to hear from people like you that have had a slow recovery, because the Internet is full of people who have recovered within a couple of weeks, I'm glad that you have made a good recovery, and you have definitely made me feel a little more positive, and for that thank you.

  • sharon24495
    sharon24495 michlove1985

    Posted

    Hang in there.  9 weeks isn't very long.  It may take a few months.  What kind of exercises are you doing?  Are you patching your eye so you don't scratch your cornea?  Your Dr. sounded rude.  Dr's really don't know a lot about BP.  Let me know how you are doing.

    • michlove1985
      michlove1985 sharon24495

      Posted

      Hi, thank you for responding to my post, it means a lot. I am currently doing a schedule of exercises I found online. I have my first physio appointment next week, that I've been waiting weeks for. I have done everything I can with my eye, but at the moment it just won't stop streaming. After my doctors appointment yesterday, I'm trying really hard to be positive, but that's a little hard when they are so negative in there profession. Did you have or still have Bell's palsy, if so what was your recovery like?

  • sharon24495
    sharon24495 michlove1985

    Posted

    I hate to tell you this but I never got over it.  It has been 2 1/2 years.  I heard the same stuff, be patient, nothing can be done, etc.  I saw about 9 different specialists. I am on the older side and we don't get over it like the younger crowd.   Try the exercises that are on the internet for Bell's Palsy.  You shouldn't do anything stenuous or anything that causes pain. Try to whistle, wrinkle your nose, frown and stuff like that. 

  • tina36046
    tina36046 michlove1985

    Posted

    Tomorrow will be 9 weeks for me as well. The only improvement that I have had is a slight indentation on the paralyzed side of eyebrow.  I was placed on a second round of extremely high steroids for three weeks. As of yet there is no Recovery, and my doctor said I have a 50% chance that I will recover but only 75% of my face , and we won't know for a year.

    • michlove1985
      michlove1985 tina36046

      Posted

      Hi Tina

      I too was told by my doctor that once I'd got to 12 weeks it was more than likely I would make no recovery. I am now at 17 weeks and with help from electro stimulation, twice a week, I am making good progress. I can smile again, although still a bit lopsided, but I still have a long way to go. However, I now know that I am on my road to recovery. Have you had any treatment offered to you apart from the steroids?

      This is a horrible condition, but there is hope, and with a lot of patience we CAN get our faces back.

      Good luck and best wishes x

  • tina36046
    tina36046 michlove1985

    Posted

    Thank you for replying. The few doctors I have gone to have not given me any electroshock. They feel it will not help. I have a specialist I am going to now. He did an mri last week just to rule out anything else. He met with another specialist and they confer there is nothing can be done other than wait. I don't know about electro, I've read pros and cons about it various websites. I am also being treated by an eye dr. But I have not made a lot of progress. I do have crocodile tears and twitching on the affected side and both of the Dr's say it is a good sign. I had a small amount of movement in my affected eyebrow, but for some reason none yesterday or today. Thank you for your help. I pray we all get better.

  • valerie26714
    valerie26714 michlove1985

    Posted

    Hi michlove195,

    I am now at 13 weeks with no improvement.  I seem to be very much in the same position as you.  At least the extreme pain is eased for me.  I am discouraged too.  I hope things improve for you, myself and anyone else who suffers.

     

  • sumi318
    sumi318 michlove1985

    Posted

    I know the post is 10 months old but just curious have you recovered completely. I am in my 6th week of right side facial palsy and the recovery has been very slow. Also, did you try acupuncture and have you done a nerve conduction test.
    • tina36046
      tina36046 sumi318

      Posted

      Sumi318, no I never did recover completely. I still am unable to raise my eyebrow and still have to cover my eye when I sleep. My smile is still crooked and I am unable to flare my nostril. But, I can drink out of a bottle, cup or glass now. If it's been 6 weeks for you the Dr can out you on another round of steroids at this point. Don't get discouraged. I may not have my face complete, but I've adjusted and am happy. I wish you the best.

    • medz43070
      medz43070 tina36046

      Posted

      Hi Tina! Im curious if you did recover completely despite the slow recovery. Your situation is kind of the same like mine, on my 3rd week, i was also put into 2nd round of steriods/antiviral for another 4 weeks, but unfortunately, i don’t have any facial movement yet. I did acupunture weekly, facial exercises and castor oil packs on my face. Im getting some pins and needles, crawling sensation but not so frequent. And lately i got this humming sound on the ear whenever I’m doing facial exercises. I was curious if you did recover and develop any synkenesis as well due to long recovery. I tried TENS once, but stop because i don’t want to mess with the nerves. So, hope youll reply. Thanks! m
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