HEMIFACIAL SPASM

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Hi I had MVD on 21st January 2013 after suffering with hfs for 18 months. I am not spasm free, although things are beginning to settle down. I have read other postings and have found all information very useful. I came out of hospital with no information regarding what I could or couldn't do and feel a little bit abandoned. As I don't go back to clinic for another 5 weeks, I emailed my surgeon regarding when I could resume driving. His reply was that I needed to contact DVLA! Has anyone else had this information given to them and what was the outcome?

Regards

Lynn

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  • Posted

    Hi Lynn

    Well done on having your surgery, but sorry that things have yet to settle down for you - must be very tough especially with the after effects of the op to contend with too. If it's not rude to ask, could you tell us which hospital/consultant did your op? I am on the waiting list for surgery and so am grateful for any info that others can offer.

    I am sure this query about driving arose previously on the thread entitled MVD Surgery 8 days ago. It seems that there is an inconsistent approach to driving, depending on which consultant does your operation. I wonder whether it's best not to ask too many questions, because we have a little known condition and we don't want to be lumped in with those who have cronic neurological conditions such as epilepsy by DVLA.

    I shall certainly be asking the question you have raised re what one can and can't do post op when I go for my pre-op assessment at the Frenchay, Bristol next week. If I get any info which may be helpful to you or anyone else on the forum then I'll certainly let you know. Meanwhiles, hope you feel better and get better very soon and that you get some fuller information. I wonder whether it's worth contacting PALS at your hospital and asking them if they can get info for you? Just a thought.

    Take care and all very best wishes, Roseann

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  • Posted

    Hi Roseanne

    Thanks for your comments re driving. I think you are quite right to leave well alone. I've got a very good husband who drives me around so I'm not in any hurry. Hopefully I should be seeing the consultant within the next 2-4 weeks, so it's not too long to wait.

    You're not rude to ask which surgeon/hospital I'm under, but because I have made negative comments regarding lack of information, I feel safer not saying. However, I come from up north and didn't leave the county! I have read good reports about Bristol, so I'm sure you are in very good hands.

    Regarding the op itself, I had it done on the Monday morning, stayed on the high dependancy unit until 4pm on the Tuesday when they transferred me onto a neorological ward until Thursday when I was released to go home about 4pm. I was well cared for in hospital (although you do have your favourite nurses) and was given painkillers and anti-sickness when needed. On a scale of 1 - 10 my pain never reached more than 3 and for the last 12 hours didn't need any painkillers at all. Since coming home, that has continued. After the op and for several days afterwards I was unsteady on my feet, very tired and my head felt like a frozen piece of meat - very strange, but every day you notice a difference as things return to normal. I was able to sleep on my side, although for the first 3/4 nights I did have a couple of extra pillows. Just too warm in bed with those stockings on (the one's to prevent blood clots which apparantly you need to ware for 6 weeks!

    Well, I'm not sure I can tell you anything else Roseanne, other than to endorse asking loads of questions on your pre-op assessment. Good luck with your op, and good riddence to the hfs.

    Regards

    Lynn

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  • Posted

    Hi again Lynn

    Thanks so much for telling me about your stay in hospital and the sensations you've had since then. I'm really reassured about the pain (or lack of it) that you describe, but know that recovery will take some time, especially because I am 62, not 32! I don't much fancy those stockings either - not very sexy and way too hot!

    Really hope that your recovery goes well and that it won't be long before you say a final farewell to HFS. Take good care and please let us know how you're getting along. Very best wishes, Roseann

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  • Posted

    Hi Lynn,

    Well done for going through with surgery, I am really pleased for you that you did not waste time with temporary fixes like medication or botox injections. I wish that all confirmed hfs patients were given the facts from the beginning that we get immuned to the effects of botox after 2-3 years at the most. I asked this question at my first botox session and was told that many patients had satisfactory results even in the long term. You may have set the world record for the fastest time between diagnosis and surgery!

    Even more impressed by your account of how little pain there was. My pain level post-surgery has never exceeded 3-4 either. I'd probably had 5-6 doses of morphine during the first 2 days of recovery and the pain is more imaginary than actual. If you follow the same path as I did, given another month or so, you should be back to 100% full health. Fingers crossed, your spasms would subside before too long.

    Have a very swift recovery!

    Best wishes

    Leon

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  • Posted

    Hi Leon

    Thanks for your comments and best wishes. Although I have been reading postings ever since I was diagnosed, I never got involved myself until recently, and I am so glad I have. My family have always been supportive and I can discuss things with them easily, but to connect with people who are/have suffered hfs has made me feel less isolated.

    As I have said before, I am getting better every day. I am less tired and have more energy - my problem is not to do too much too soon!

    I am encouraged by your recovery and look forward to the day I can get back to normal activities like driving and being able to book a nice holiday in the sun.

    I hope you continue to keep well.

    Regards

    Lynn

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  • Posted

    Hi Lynn,

    How are you? Hope you are free from spasms now and enjoying a full and healthy life.

    Quite a few of us here have joined the Facebook HFS support group where over 300 members are sharing their hfs / mvd experiences on a daily basis. It will be great to welcome you to the group.

    Best wishes,

    Leon

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