Remitting Hemifacial Spasm - surgery or not?

Hi Roseann, Eleanor & Rebecca!

Thank you for the response. I'm so glad and happy to know someone like you who can understand me and understand our sitiuation, since your having a HFS as well (I'm sorry for my bad english ^).. I think I'll try first the SPZM as per your advise, try to look at it here. I already saw the Facebook Page for HFS, and I already joined the group, it was great! Are you guys are there also? Hope to know more updates from you guys and I hope to keep in-touch with you! Thank you and God bless us! -Jayson

Hi again Jayson

Good luck with the SPZM. And God Bless you too. Let us know how you get on. And I'll let everyone know how I get on with the surgery - am now very near the top of the waiting list and so should have news very soon.

Very best wishes for your improved HFS and improved life. Roseann

Roseann...you better keep us posted on your surgery. I'll be praying it's soon, but even better, it's successful right away. I saw Jason on the FB site and welcomed him. He's a nice young man...put his picture on the site as well. Stay strong and don't forget to pass on all the info you can ... we care how things are going for you. Eleanor

Oh thank you Eleanor, that's really kind of you to care for me. It won't be too long before I shall be posting with an update................... the dreaded surgery is in sight. x

PS Yes, I did see Jenson on the FB site - a very nice person.

Hey Rebecca...just wanted to let you know this is my third SPZM try. It does work...maybe not totally for me since I'm pretty much in the "hit and miss" category these days with taking it...but I do see a definite improvement in the frequency of spasms when I'm on it. Still having the unintended consequences which require frequent "pit stops"...but my husband seems to think perhaps eventually my system will adjust and things will be normal again on the pills...fingers crossed.Hope all is well and you are still seeing improvement. ...

Hi Roseann & Eleanor,

Yeah, I already found the site at the FB, thanks for the idea.. Yeah its me, with the picture I posted there.. :-) Warm welcome from the people there I received, I'm so glad to know that there are so many people like us. I can share and express my self. Are u guys a member there as well? God bless! -jayson

Hi Jayson

So pleased you are finding friendship and support on both these sites. Yes, I am on the other one too (Facebook) where my real name is Angela Bond. Keep smiling and God Bless. Roseann

I take great pleasure to announce the following - Roseann went down for the op at 8.30 this morning. She is now back on the ward and very well. Still groggy and very tired but definitely ok. If there is any more news I will let you know but otherwise I am sure you can expect to hear from Angela in the not too distant future.

YIPPEE!!! HOORAY!!! WAY TO GO ANGELA!! So happy for you. Thanks so much for letting us know. Here's to days and days of a spasm free life!! Oh I am so jealous!! Wonderful News...made my day...

thanks for sharing.Sending love and prayers for a speedy recovery!! Eleanor (I'm smiling ear to

ear for you girl!(

Rebecca...first great news about Roseann...can't wait to hear all about it!!! I'm back on the SPZM again. Still having the same problems, but not as extensive so hopefully my system will get used to the pills. Also I'm taking ALA (Alpha Lipoic Acid) along with the SPZM. I read in all my surfing on HFS that some have taken ALA which is known to heal nerves and provide "nutrition" to nerve endings to help stabilize them. Don't know if it's mind over matter, but with the combination of pills I'm doing better. I was not doing well at all not taking any meds...so I can tell the difference when I'm on them!I'm only taking 4 a day of the SPZM...two in the morning after breakfast and two before dinner and two of the ALA's, one each time. As my resistance to the SPZM builds up, I'll up the dosage. Hopefully you are still doing well...you are my inspiration in this so let me know it's still working. I look once in awhile at case histories on the HFS Association page (which is terribly out of date) and it's so scary....I'm ready to leave my family and move to Pittsburgh for that operation... But then when my face is quiet for a bit....I think I'm making progress here. I hope, because some of those photos and videos are so depressing..... Going to my doctor on July 8th...this will be my first visit to any doctor to discuss my HFS...want some feedback from him on others he's treated, let him know about the SPZM and ALA and also get info on some of those drugs (Gabapentin) that some have tried with success...although turning into a ZOMBIE is not all that appealing either!! Hope all is well...drop a new lines when you can. Eleanor

Hi Everyone! I hope all is well with Roseann's recovery? We look forward to her news and hopefully excellent outcome. And Eleanor, do let us know about the ALA and Gabapentin, any side affects. I'm reluctant to try drugs as long as I have my HFS under control with current methods. Best wishes to all, Rebecca

Hi again Rebecca and Eleanor

Day 6 post surgery and back home safe and sound, having just been to the doctor to get my stitches out - 20 in all, but painless to remove thankfully. Thank you so much for your very kind wishes and thoughts - the kindness of relative strangers means so much at times like this.

I don't think I am going to have complete success with the operation but I already know that I'm lots lots better. Mr Patel said that he could not get too deep down into the brain stem for fear of causing serious side effects (an artery too close to facial nerve at stem of brain) but he reported some good responses to the lateral spread testing during surgery. It's very early days yet so we shall have to see how it all settles, but, for the moment, I cannot tell you how pleased I am that it's all over and that it all went without hitch or side effect so far. It's not a walk in the park, but it's not too awful either. And I am the world's biggest coward too!

Still a long way to go on the road to recovery but, as I said on the other thread, it feels like someone has taken a huge black cloud from off my head. I can actually see a happy life up ahead again and you don't know how good this feels.

Thanks again 'girls' for being there for me and caring. And all very best to you both on whatever road you choose to tread with this nasty condition. Love, Roseann x

Hi Ladies....so good to see both your names this morning. Rebecca I've not taken any prescription meds as yet. I am going to my primary doctor on July 8th just for feedback and suggestions from him on ways to proceed. I got the feeling when I was there with my husband that he's had a patient(s) with HFS and I'm curious as to the process they followed. If that scenario bombs...then I'll find a neuro myself (probably my husbands) and try to get an MRI through those channels. I do take the SPZM and the ALA...but not as religiously as I should. I'm good with the morning dose...but then my days seems to get away from me with other things and I get off track. Just keeping track of my husbands morning, noon and night meds is a chore...we have indeed turned into pill-popping seniors.

Roseann you sound great. I am so pleased the outcome was good and you are home healing in your own bed and environment. How much we can appreciate what's so easy to take for granted. I pray for a positive outcome from your surgery and a definite waning of spasms over time. You have made me really take another look at surgery and travelling out to Pittsburgh myself. If I could arrange things at home here without worry it might be a possibility. But hearing your success and uplifted spirits having gone through it, it has made me try harder to fit an eventual operation into my own life. I will have a clearer picture after I get involved with doctors of one type or another. But hearing all the success stories on the FB site are indeed encouraging.

In the meantime, I'm keeping up my pills and Rebecca I just ordered one of those things to wrap around your neck that you can put ice packs in...sort of along the lines of your eye mask. I was thinking that "cooling" your neck where the nerve and artery actually come into conflict might calm them down and elongate the times between spasms. I saw them on eBay and they run around $20 or so and I might just give them a whirl. Of course, to listen to others on the FB site...all these stop gap measures are in vain because there's no "fix" except the surgery...but like you I'm determined to mitigate this myself to whatever extent possible.

Well, I wish both of you well on your individual paths through this. Roseann (Angela) I am so very happy for you and admire your positive outlook...you are indeed an encouragement. And you as well Rebecca, both of you coming at this from different directions. Since I've not made a decision either way...I am buoyed by both your successes until I can decide which long term one is best for me. Stay well and strong both of you...and more important, stay on this page from time to time, okay?Sincerely, Eleanor

Hello,

I am Rajini, My age 28. My left eye twitching last 9 months. but last 3 months near to my mouth also twitching. I checked with doctor they confirmed hemifacial spasm. Still i didnt

take any treatment. What is the best treatment for permanent.

Please help me. Really i am upset...

Hi Rajini

So sorry that you are coping with HFS at such a young age. You are certainly not the youngest, but it must be really hard for you. I am wondering where you are in the world?

I am also a member of the Facebook Hemifacial Spasm Support Group and have realised from all the posts that there is, unfortunately, no cure other than having surgery. This surgery is not brain surgery but is performed to the nerves in the area of the brain stem. The surgery does carry risks, but, if you choose your surgeon carefully then 80% of patients will be cured and another 10% will be much improved by the surgery. The most important thing is to choose a surgeon who has done MANY microvascular decompression surgeries and whose results are good. The facebook group has a list of all doctors who are known to its members, but you still need to do lots of research to ensure that you are choosing the right one.

If surgery is not a possibility for you then the alternative is Botox injections every 3 months. These work well for some people but not for others, and they are not a cure, just a way of relieving symptoms.

My own experience is that Botox did not suit me very well (I had x 3 lots over about a year) but MVD surgery has cured my spasms.

I hope that this info helps you a little. I will post a link to the Facebook group in a separate post (because it will have to await the moderator's approval). I wish you well, and soon Rajini. Best wishes from the UK, Roseann