hi
my name is chris, im 33 and have been suffering with the spasms for the last 5 year
when my spasms arnt that bad it can be something from a bit of twitching on the left hand side of my cheek with minor headache, when there at there worst its as if my whole head is affected as though someone is shaking it with there hands and i was just wondering if anyone else is affected in this way. ive had the mri scans which show the blood vessle trapping on the nerve but when i mentioned the shaking off my head to my surgeon he said this dosnt normally happen with hfs so he seemed very unsure when talking about the surgery...
would love to hear back from someone as this could make my mind up about the operation
Hi Chris
I'm a 61 year old female HFS sufferer and have had it for about 8 years. Have to say that I have never experienced the sensation of my whole head shaking and it doesn't seem to fit with the symptoms of HFS as described on this site or others. Might be worth asking for a few more tests before you accept the surgical option? It's a relatively complex operation by all accounts and not one to be undertaken lightly. I too am deliberating over whether I should go for it or not. Good luck anyway and hope you find some relief.
Roseann
Hi Chris
I'm also living with Hemi and it is a hard one.It has effected every aspect of my life and I sometimes find it hard to cope with the normal social functions of socializing.I do have a wonderful compassionate doctor whom I found in Toronto who gives me my botox shots so that I can go about life like a normal person.I only wish they can find a drug thats not like botox,I am concerned about the long term effects.Since I started botox I developed vertigo.I'm not sure if the two are connected but I never suffered from vertigo before that.Hope your coping well Chris! I have spoken to my doc about surgery as well but the thing that scares me is the risk.
Hi Lilith,
I have suffered about 3 spells of vertigo, roughly about the same time as I was receiving botox treatment to control my hfs. My doctor diagnose this as labyrinthitis (infection of the inner ear) and did not think that it was brought on by injecting botox. After trying several drugs, I found the one that works best for me is betahistine dihydrochloride. The botox worked for a couple of years before losing its effectiveness, or rather I developed an immunity to botox like all those before me. Surgery became the last resort.
Thankyou for sharing on the topic of HFS with me. I am about to do another MRI to see if they didn't miss something.Happy for you that your surgery went well.Are you now spasm free? I am considering the surgery and have spoken to my doctor but he just keeps giving me all the risk factors and seems to be straying me away from doing it. I will be looking for a support group in my area so that I don't feel so beside myself living with this.Great to speak with someone who had the courage to go through the surgery.Kudo's to you my friend!!! Yes the vertigo comes and goes but I never had this before Botox! Take care nice to chat with you about this topic!….Lilith
Hi again Lilith and Leon
Very weird but I woke up this morning unable to stand up and being sick/afraid of the light. Do has diagnosed labyrinthitis, just by coincidence. Reading both of your stories it seems to me that HFS can be closely associated with vertigo/labyrinthitis, but I can't put mine down to Botox because I gave up on it several years ago.
Sorry to burden you with my today's troubles, but thought it might help you to build a picture to report to your consultants.
All best to you all, Angela
Hi Angela and Leo
Angela did you wake up turn on one side and the room started spinning? If so this is vertigo, mine always happens in my right ear,I was sick for 3 weeks but what I do know is that stress can really bring it on full force.I notice even the damp weather ,rainy days and cold can trigger my vertigo.They say it is caused by crystals in the layberinth or inner ear.Try to not move alot if this is how you are feeling.Rest as much as you can.Sorry your having a rough day.I know that I some times I feel like I'm not getting proper blood flow to my head and that can also be a trigger for the vertigo.I am 55 years of age.the common age for women to develop vertigo.Try and get to a doctor asap,maybe you have verigo flu, it has been here in Toronto and it can leave you flat on your back for weeks.When did you last notice you were feeling off.Did you just wake up feeling sick? The thing about the light making you feel ill should be something to get checked out asap.Go to emergency.I don't like the sounds of what you are feeling. Just concerned that you get the right medical advise!!
There is no concrete proof, but I believe that in my case the labyrinthitis was caused by taking atenonol for high blood pressure. Since I have switched to lisinopril, I haven't experienced another spell of vertigo other than that I had for about 2 weeks post mvd surgery. The high blood pressure may in turn be caused by hfs as reported by some sufferers who have since recovered after successful mvd surgery!
Thanks for your replies Lilith and Leon, much appreciated and nice to know you care too. It was exactly as you describe Lilith - woke up feeling fine, turned to one side and wow, the room was spinning and I needed to be sick. My husband called the paramedics and they were excellent in checking out that I hadn't had a stroke/seizure/MI etc. Pleased to report that the anti-nausea injection and tablets have really helped. Not sure what the light sensitivity was all about but it seems to have subsided, so hopefully no more than a migraine type symptom. But I shall seek advice if it continues, thanks. Interesting that you feel yours was associated with change of blood pressure medication Leon - I've also observed changes after change or increase in meds for BP, but usually very positive ones in relation to the spasms.
So nice to have this online community who understand all this rubbish and who can be bothered to discuss. Thank you both so much and very best wishes too. Roseann
I had microvascular decompression surgery for hemifacial spasm (suffered for 5 years) on February 1, 2012. I would encourage all of you to contact Dr. Raymond Sekula in Erie, PA Hamot Hospital. Dr. Sekula trained under Dr. Peter Jannetta who developed the procedure in the US. I am now on my third week of recovery and have remained spasm free, can't even explain how wonderful it is. Dr. Sekula has a 94% success rate and has completed over 250 surgeries. For a condition that effects only 1 out of every 100,000 people, he has done a considerable amount. He is a fantastic surgeon and a wonderful person.
Many thanks for this info Margaretann and so very pleased that you've at last found relief from this horrid condition. You must be over the moon. Enjoy life now and all fingers crossed that you've had your last spasm. All best, Roseann
Thankyou Mararetann for sharing your information with us.This makes me happy with joy for you that you braved this op.I have had Hemi spasm's for 25 years and maybe it's time for me to also consider speaking with my neurologist and getting a second opinion about surgery.Did you suffer alot of head pain and what type of drugs do the give you after surgery?I am in Canada so my options would be here so if your doctor knows of a great surgeon in Toronto please let me know.I hear more positive than negative about surgery so it's changing my mind about doing it.God bless you and keep on smiling Margaretann you are a blessed soul.Sending you lots of healing energy! Lilith
Hi Lilith,
I just wonder if you had a look at the surgeons' mvd surgery results found under 'mvd surgeries' page of the hfs-assn dot com website. In Canada, Dr Anthony Kaufmann seems to be the most prolific, but he is based in Winnipeg. There are a few based in Toronto whom you may consider. Let me know if you can't find that page and I will send a link (there may be a long delay if I send the link as the forum administrator takes some time to verify). Hope you can find one who gives you the confidence to seriously consider surgery.
My surgeon spoke to me just 10 minutes before I was due to go to the operating room, that the procedure might not work! I suppose he wanted to be sure that I was determined to go ahead. In my case, there was not much head pain at anytime since I woke from surgery, never higher than a 4 to 5 on a scale of 1 to 10. As soon as it reaches 5, I asked for a dose of morphine and it works within minutes. At other times I took only paracetamol as painkiller. I did not need to take anymore painkiller from day 10 post-surgery. I suppose I am one of the lucky patients who had an easy recovery period, as I understand other may suffer side effects, some fairly serious. I don't consider myself brave to have chosen surgery, it's the spasms causing me so much grief that I have finally decided to take drastic action! My surgeon did neither encourage nor discourage me from surgery, but simply informed me of the risks involved and that success is not guaranteed.
Wishing you all the very best!
Leon
Thanx Leon,
I will see if I can find the list of surgeons on this
site.Time to do some research.Again thankyou for the time.
Lilith
Leon,
Is this the link? http://http://www.hfs-assn.org/surgery.htm
If you want to post links but don't want your associated comment to be hidden while it waits for approval what I have suggested to others is, post your comment/advice etc and then post immediately again with the link. This way only the link is wating for my approval. Now things are settling down anything posted after hours will be approved the next morning/working day and if posted during the day should get approved the same day.
There are some times when there may be a delay as there is only me moderating these forums and I have several other jobs but things will get quicker especially once I get an email alert mechanism telling me when a link has been posted.
I also keep an eye on every post that gets left here and act on them if necessary. This sometimes takes a while to catch up on, like this case, due to other workload.
If anyone ever has a direct question use the word moderator as I use this to scan posts for any queries I can help with.
Hope this helps.
Alan aka Emis Moderator.
Thank you very much, Mr Moderator (Alan), it is indeed the link that I was referring too.
Hi, Leon:
where did you have your MVD done? Toronto? If so, can you please let me know which doctor?
thanks,
tom
Hi Tom
I wonder whether you've found the Facebook page entitled Hemifacial Spasm International Support Group? There are quite a few Candians posting on that forum and you may find the information you need. Just make your own post and ask the question about surgeons in Canada. My own experience (having had a successful MVD last year) is that it's highly important to get a very experienced MVD surgeon, and one who can furnish you with his personal operation rates and success rates. You should be looking for 80% complete success and 90% who have improved. And for a surgeon who does at least a couple of these operations every month over a long period of time. Don't touch those who need practice!! Anyway, wish you all the best, Roseann (from the UK, as is Leon)
Hi, Roseann:
thank you so much for you information.
tom
Hello Chris,
It seems we suffer from the same illness. I was wondering if there was any progress in your case? My name is Tanya and it feels as though I have been chasing my own tale trying to get what I feel are solid answers.