Hemifacial Spasm

[livingwith]

I was diagnosed with hemifacial spasm a couple of years ago. i had had the condition for some years before that. it is not well known by many doctors and not easily identified. i first noticed an eye twitch. being aggressive in my approach to my health, i saw a neurologist who performed a complete neurological exam and found no deficits. i had an MRI at the time which was normal.
Several years later as the condition progressed, I again became concerned. my family doctor suggested it was due to ...Read the full article

[Angelica]

Hi,
I read that you are considering the treatment options and have decided to do nothing.
Do the Microvascular Decompression! It works! It changed my life and I am very happy I decided to go that route. My facial spasm had gotten progressively worse as the years went by and Botox is only temporary. I had the surgery done on Feb. 14, 2002 and my twiching has not returned.
The facial twiching had gone from my eye (barely noticeable) to the entire half of my face down to my neck. Always on the left side only. My surgeon was Sohiab Kureshi in San Diego California. Had no complications from the surgery and everything went exactly as what i had read on the internet.
Good luck with your decision.

[annewilma]

I have been living with hemifacial spasms for about ten years, getting Botox injections since it was identified. They now last only about a month each time and I am ready to get the surgery. It has developed a lot in recent years but I am unsure how to go about finding the best doctor to perform the surgery. The spasms have spread to include the entire half of my face and are moving into my neck. Anyone have any suggestions?

[Angelica]

Hi!
I understand what you are going through. The EXACT same thing was happening to me. The spasm had reached the point of moving the entire left side of my face down to my neck. My surgery was performed at Scripps Mercy Hospital by Dr. Sohiab Kureshi. It's been 5 or 6 years since the surgery and the twitch has not come back. (619) 297-4481 is Dr. Kureshi's tel. number. Give him a call. You won't regret it. Also, my insurance covered everything and i have an HMO !
Good luck,
Angelica

[annewilma]

I read that people who had been receiving Botox had a lesser success rate. Had you been using them, and if so, how long? Thank you for your doctor's name and number. I am checking with my insurance company tomorrow about coverage. It would have to cost less to get the surgery that continue with the injections. Anne

[Angelica]

I had been receiving botox for a couple of years, i think. These are the treatments that i did:
Acupuncture...did weekly or bi-weekly accupuncture treatments for extended period of time Twice. I did it with one guy, consistently on a weekly basis and at the same time was taking a chinese herbal tea concoctions. ( he studied in china with the monks ) needless to say, nothing improved. I saw two different neurologist who prescribed anti seizure meds and none of the meds worked and the side effects were terrible. I tried accupunture for the second time with a completely different person and nothing improved. The only thing that worked was botox but as you know this is only temporary. From the onset of twiching until surgery, about 10 years had elapsed. I found Dr. Kureshi on the internet because he had writen some articles on the procedure and it turns out he is a doctor at Scripps Mercy in San Diego where I work on the weekends! I still see him every now and then when he is on weekend call. Because this condition is so rare, i told him that if he ever had another patient with the same condition, I would be happy to speak with them if they are contemplating getting the surgery.
As far as the insurance covering the surgery, they probably will realize they are going to pay botox forever because this condition only gets worse, so they would rather pay the surgery!

[annewilma]

Thank you for all the info. I live about two hours from Chicago, and there are excellent hospitals there. I'm just not sure how to find someone with experience in the procedure. I will be 58 next week and have been plagued with them for over 10 years. They have gone into my neck and are affecting my speech somewhat. Just recently I have been having difficulty swallowing and had to be given the heimlich manouver twice. Once in a restaurant. I just did a barium swallow test and it showed a poorly functioning lower esophageal sphincter muscle. Now I wonder if it is part of this same thing. I need to follow up with that when my doctor gets the test results in the next few days. I am going to get all of my medical records together so I am prepared. I dearly love my neurologist, but I would never allow him to do the surgery. I will ask for references from him, though. I used to get horrible migraines---always on the right side of my head. Now I get the spasms on the right side, and have developed vertigo-----again, related to the spasms???? How wonderful if this could all end. I realize it's nothing compared to some of the awful diseases out there, but it has affected so much of my life. Again........thank you. It's great to have someone who knows something. Anne

[Angelica]

Hi Anne,
You are welcome! I understand your concern about trying to find someone with experience performing this type of surgery. This surgery is not done too frequently, so it's a challenge finding the right neurosurgeon. Perhaps you would like to contact my neurosurgeon and he might know of someone in the Chicago area?? Best of luck to you.
Angelica

[bruces]

I'm currently recovering from surgery for hemifacial spasm and had the operation about 9 days ago. I still have headaches that come and go, but I have pain medication for that. I previously had surgery for a stomach problem and the recovery was much worse. Recovery is not a picnic but I never expected that.
I'm in sales and it became very aggrevating because I dealt with so many new people on a daily basis I got tired of explaining what was going on and just decided to get it taken care of. If you have any questions about recovery let me know, I tell you actually how it feels.

[TRINA]

How long did you have the HFS for? How severe was it? What treatments did you try prior to surgery?
I would love to hear about your progress and are you having any more HFS.

~Trina