Spasm-free post-MVD surgery?

I had my first MVD in May 2005 with a NHS surgeon at my local hospital in Hull, Yorkshire which was completely unsuccessful. In November 2007, I had my MVD #2 with Prof. Coakham. I was not spasm free immediately but over the last 22 months the spasms have gradually decreased and I only have mild ones for a few seconds once or twice a week now. After nearly 15 years of having spasms - the last two months have been a joy and hard to believe - I very occasionally get a slight muscle pulling in my face but NO SPASMS. Its been a very long haul and I still can't quite believe they have gone for good. (MVD #1 with Mr. Kevin Morris on 05/16/05).

(Sue Jackson)

I was one of the slow healers. Although I had absolutely no side effects from the surgery which went very smoothly it took me about a little over 2½ years to be “SPASM FREE”. Even now though I am spasm free about 95% of the time I do have the occasional relatively low intensity spasm (but still noticeable) usually associated with tiredness or stress. As long as the frequency or intensity doesn’t increase from this level I am not complaining. In fact I feel very happy and lucky to be where I am today. I didn’t regret having the MVD even when I wasn’t spasm free initially.

(Dianne Joyce)

It happened all of a sudden, exactly 6 months and 4 days after my MVD.......I noticed my spasms were completely gone. For the last month, I got intermittent twitches that lasted seconds, but still occurred whenever I ate or opened my mouth wide or faced a stressful situation. Another trigger was biting my lip. I've been playing with it for 2 days now, just to be sure, and I can't even "make" it happen. I think I’m now finally spasm-free. For those who had MVD and still have spasms......give it time.....and have faith.....things will get better! (Angelia Kwok)

I am delighted to be able to say I am still SPASM FREE ! Immediately after finding this group I knew a MVD was right for me. Although my surgery was 3 years ago, I have only been spasm free for a little less than 2 years as it took 14 months post op for my facial nerve to heal completely. There were many times I thought my surgery was unsuccessful, as did my neurosurgeon, but patience paid off in the end. (I had HFS for 14 years with many Botox treatments during that time). I am going to send Dr. Haines a thank you note as he changed my life by taking care of my facial "deformity". He did train under the fabulous Dr. Jannetta so my thanks to him as well. (Cathy Larsen)

I am very happy to report that although it took 4 months, I am now spasm free! I had my surgery with Dr. Peter Jannetta and Dr. Ray Sekula at Allegheny General on Nov. 14, 2007. My spasms were still there after the surgery but not as intense, and gradually got less and less. Only when my wife asked me a few days ago how my spasms have been did I realize, oh it's gone! I didn't even notice because it was so gradual and slight. I have to give deep thanks to Dr Jannetta and Dr Sekula for a great successful MVD. They are the absolute best and they have given me my life and my confidence back. And thanks to the HFSA group, I was able to make an informed decision about doing the MVD. Thank you. (Lawrence Lee)

Update as of 07/29/08 (mvd 07/24/03) – I have been “SPASM FREE” for the last 2 to 2 1/2 years. It was a very slow process and a bit confusing, especially when trying to understand whether I would need a second MVD or not. I kept seeing small improvements, so I decided to wait. It paid off. I hope to write my diary, w/emphasis on long term healing -- by year's end! The HFSA made it all possible! I will be forever grateful! (Joy Lewis)

I had my MVD 3 weeks ago and still have spasms. The doctor told me in the recovery room that there's no lateral spread, so he thinks he got the right spot, but that it will take the nerve some time to heal. Thanks to reading the experiences of others. I have had HFS for over 10 years, so I guess I can't expect the nerve to be

nerve to be healed immediately. Thanks to all of you for the encouraging words. I can't tell you how much comfort they bring me. (Susan Lopez)

Update as of 01/22/08 (mvd 09/27/07) - I’m officially “SPASM FREE”. I told Jack last week about being free of the spasms but I was a little hesitant to make it official because I was afraid they would return. However, I feel safe in saying that I no longer have the spasms and I’m enjoying wearing eye makeup again! I even tested it out with my husband and my children to see if any of them could see the spasms and none of them could. I also want to continue to be a part of such a wonderful organization to encourage others who are suffering with spasms because I know the ordeal that people go through with this disorder. I’m just so grateful to know that there is a chance for a cure rather than having to suffer with the spasms and that the success rate is so high. Again, I thank each and everyone for your support and I’m so happy to say that nearly four months after the procedure I am able to smile again. Please know that I can be of any assistance to you in any way, please do not hesitate to ask! (Sonia Moore)

Update as of 09/21/07 (mvd 10/27/05) - For those of you out there still considering an MVD or still having spasms after surgery take heart and read on. It has been almost 2 years since my MVD with Dr. Jannetta and I am totally free of spasms. I have healed so well that I have none of the facial weakness that Dr Jannetta thought would remain. My smile is balanced and any "funny faces" I make, I am totally in control of !!!!!

The healing path was long. Six months after surgery the only improvement was that my HFS side eye no longer watered. Ten months after surgery I thought it was somewhat better but my eyelid kept sticking open whenever I blinked for a few seconds before it would close... THAT was annoying, but only lasted a couple days. But then one year after surgery the spasms seemed to just fade away and 18 months after the surgery I was ready to say I was "SPASM FREE". There were still occasional funny sensations but NO spasms or twitches. Now almost 2 years after surgery I am free of any spasms, and have no ill effects from the surgery. I thank Dr. Jannetta every day and am so grateful for this group for helping me find my way back to my smile.

(Laura Nuessle)

Became spasm free 5 months after MVD. (Christophe Oustalet)

My 2nd MVD was a very easy surgery. Dr. Jannetta removed the last source of compression, a small threadlike vein, and could see no other reason for the spasms to continue, but they actually got worse for a bit through the middle months of 2007. Since June 2008 I’ve been spasm free. Having HFS since about 1995, it is still so new to be able to sleep any way I want without being awakened by spasms, or to be able to smile almost normally - it's just awesome! It is wonderful to be able to feel like a normal person again, and not have to constantly pull my face out of tonus! Believe me, people really looked at me when I was having spasms and tonus. I want to reassure those that didn't get immediate results from their MVD that it took more than a year for mine to resolve and at this time, it's almost like I never had them, thanks to Dr. Jannetta and Dr. Sekula - and this SUPER website! (Kim Porter)

Became “SPASM FREE” at 10 months post-op. It was a long road to recovery and I still have some balance issues but I believe that my Peripheral Neuropathy is the main cause of that. My hearing on the surgery side has not come back completely but enough that I can live with it. (Marty Ridder)

Update as of 06/28/08 - I am very pleased to say that I no longer have any spasms or other symptoms of HFS. I was spasm free for 3 months from September until December 2007 when they started to return. By May 2008 they had again decreased and now I can say I am again enjoying being “SPASM FREE”. To those who have had surgery and are not yet spasm free, I would li

Update as of 06/28/08 - I am very pleased to say that I no longer have any spasms or other symptoms of HFS. I was spasm free for 3 months from September until December 2007 when they started to return. By May 2008 they had again decreased and now I can say I am again enjoying being “SPASM FREE”. To those who have had surgery and are not yet spasm free, I would like to say - don't give up; have faith and think positively that you will become spasm free even if it takes more time than you think it should. (Rose Marie Schmidt)

It took six months following surgery to become spasm free. (Peg Schuster)

Update as of 08/24/07 (mvd 04/02/07) - This second surgery was very tough on me. However, It seems like it was all worthwhile. I haven't had a hint of a spasm all month. So I am officially "SPASM-FREE". I still have some issues with my voice, but outside of that I am fully recovered. I feel like I have a new lease on life and I can't thank the HFSA enough for this site. Without all of our members, I could have never gone through with the surgeries. Thanks again and GOD BLESS. (Bob Scrudato)

After 19 months, I can now smile radiantly without a twitch, wink or a spasm. I believe I am finally "SPASM FREE". Up until last month, I still had an occasional twitch and was beginning to think I would never be spasm free. Even, the neurosurgeons I work with thought I should have been spasm free a couple months after my surgery and were upset with my results. I told them I would give my nerve two years to heal, based on the damage that Dr. Jannetta told me I had. Today, I am writing to you, SPASM FREE", to advise others not to give up hope. Just remember to give your poor, abused nerve time to heal. (Rickey Werner)

My MVD went well and the wound healed quickly. Recuperation took several weeks. The spasms returned 2 days after the MVD, but very gradually became less severe over the following months until I found myself Spasm Free after about 3 months. All of the physical symptoms have gone, including the problem with breathing through the left nasal passage (the tinnitus is still there, but may not be related to the HFS). Choosing to go for MVD was one of the best decisions I have ever made. (Mike Wild)

It took almost eight months after my second surgery in 2001 and after two courses of Botox B ( Botox A did not work after my first surgery) that I noticed that I no longer required Botox. I ascribe it to a slowly decompressing 7th nerve. The second surgery involved moving the offending blood vessel off and away from the 7th nerve and fastening it to the skull. I have now been spasm free for almost eight years. 7th nerve may decompress in time. (Lionel Wolfson)

Hi YKL

Just wanted to say a huge thank you for compiling and posting this. It is exactly what I needed to find today. Just 6 days post-MVD, just starting to feel something like myself (while lying or sitting, at least), I'm already getting down about the twitch being about as bad as ever, despite repeated reassurances from a surgeon I trust that they will improve after what he saw and did inside my head. Getting this from the side of patient testimony makes it much easier to keep faith that I've done the right thing by going for surgery. Thank you

ANM

Hi ANM,

I am really glad that you have been reassured by reading other post-mvd patients' experiences, and very well done for opting for surgery as I know only too well how difficult it is to come to this decision.

Come 3rd July and it will be 6 months since I had the surgery. My spasms are about 30% better than before surgery as expected by my surgeon on most days but they can be really bad on some days, so don't despair if they are a bit up and down. At my follow-up session 2 months later, I was told that 2 offending arteries were padded away from the facial nerve. I have another appointment in August and if the spasms are still present, I may ask the surgeon if another mri scan is advisable.

May I ask in which hospital did you have your surgery?

One bit of advice from my own recovery - do keep taking the ondemet tablets (if these were prescribed) even when you don't suffer from nausea and vomitting. I developed dizziness about 2 days after stopping the medication. Then I was told that these tablets stop the dizziness too even though this is not stated on the box.

Hope you have a speedy recovery and more importantly rid of the spasms soon.

Best wishes

Leon

Hi YKL and Noony Mouse,

How are the spasms now? I've had MVD a week ago with spasms still presistent. I was also told that spasms should decrease over time..

Hi ABCDEF,

My spasms are still present, but it has improved by about a third, which was predicted by my surgeon.

I have read how our hfs may be caused by 1 or 2 factors. For those who experienced an immediate cure after surgery, their spasms are caused by solely by an artery coiling around the facial nerve. Others, like us, there is the additional factor of demylination of the nerve - basically, the covering of the nerve is damaged hence wrong signals are sent to the brain. This is explained in great details if you look up "demylinating disease" in wikipedia. Others whose mvd surgery has failed completely because the surgeon has failed to locate the offending artery.

I hope that in time, the facial nerve would heal (many neurosurgeons have stated that this could take up to 3 years!) but I may have to accept at some stage that the surgery has failed to cure the spasms completely.

Some patients become spasm-free a few weeks/months after surgery and I sincerely hope that you fall in that category.

Very best wishes,

Leon

Thanks YKL - hopefully it will heal in time. I figured that was the cause..either it was not decompressed approrpiately or there was damage to the insulation of the nerve - which would explain why it takes time for the nerve to heal. I am sure yours will subside eventually - has the surgeon confirmed this is your case? If not, would a second MVD not fix the cause? I am under this hope as well...as much as I'd hate a second MVD...

Hi again,

I saw my surgeon's assistant at a follow-up session 2 months post-surgery. All he said was a case of wait and see. I have another follow-up in 2 weeks' time and I will ask when is it time for another mri scan to see if a second MVD is appropriate. I will not ask for a second MVD as I find the reduced spasms now quite bearable and I don't fancy opening up the same spot again if I can help it.

In the next discussion thread on this forum, a lady from Canada mentioned that she had her second MVD 5 months after the first and she is now spasm free. But in her case, there was infection and fluid accumulated in the incision site, so it was a blessing that the 2nd operation cleared both conditions. I will wait at least 2 years before reconsidering.

Hope you have a very swift recovery as I had, no complications at all thankfully.

Leon

Thanks YKL, your postings really do help; especially after patients have MVD and are not spasm free - provides a lot of hope!

Hi,

I have found more patients' reports from the 'list of members' page of the HFS-assn website, these are in addition to those I have already posted. Hope they provide us with further encouragement.

Mary Bruni

Update as of 01/29/09 - In May 2008 I became totally spasm free. This would have been 1½ years after my MVD surgery. My recommendation and opinion to all that are still suffering this horrific HFS is that MVD is the only answer and solution to this condition. If needed be, I would have done another MVD. I am totally enjoying having a normal face again and there are also times that I even forget that I ever had HFS.

Kay Cooney

Update as of 04/09/09 – Two months after my MVD with Dr. Casey I can say I am “Spasm Free”! My spasms gradually got weaker over the weeks and now have been gone for a week or so. I do not have any hearing loss (my hearing was monitored during surgery), or other complications. I did have a "plugged up" feeling in my ears after surgery and I went to a Ear Nose and Throat Dr who took a good sized plug of dried blood from each ear canal. That helped a lot and the rest of the "full" feeling has gradually subsided. It is now only 8 months since I looked up "Facial Twitching" on the Internet and found the HFSA website and discovered that "HFS" was what I had. None of the Doctors I had complained to seemed to think anything of it. If it weren't for the Internet and your website I would probably still be twitching. I am very grateful to all of you for all I have learned! Thank you all!

Charlene Donna

I was not spasm free at first (mvd March 26, 2009) but today is May 29, 2009 and I am spasm free.

Donna Eng

After 1st MVD in June 2000, spasms were decreased by half but gradually got worse and I developed tonus (sustained contractions for upwards to 10 seconds at a time). After the 2nd MVD, I've experienced some very mild spasm days (which I haven't had in years) and also some extremely bad spasm days. I think this time round will be successful because of the mild days and because I've also experienced flutters / twitches of just the eye and of just the mouth (which I also haven't experienced in years) vs. actual spasms of the left face!

As of 11/25/01 (mvd#2 on June 12, 2001), I'm pleased to announce that I'm SPASM FREE.

Marty Geeves

Update as of 08/27/08 – Remain dizzy 13 weeks post-op although slowly improving. My spasms subsided for 10 weeks but now they are back bigger and bolder than before surgery. Damn, can I say that? Spasms and still dizzy from op.... things can only get better. hooray...things got better,2 months later....spasm free.

Jeanette Hansen

Update as of 11/15/08 - Well, here goes the words I wasn't sure I would ever get to say. I AM HAPPY TO ANNOUNCE THAT I HAVE BEEN SPASM FREE since about 10 months after my 2nd surgery. I still can see a vein pulsate under my eye periodically and every great once in a while I have what I will call just a very mild flutter/tension in my lower eyelid, not bothersome at all, not noticeable, and less and less as time goes on. This is so unnoticeable that I now look completely normal.

I�m ecstatically happy since this went away. I feel like singing, dancing, doing cartwheels, you get the point. I did lose the majority of the hearing in the right ear/MVD side. I went to a hearing aid center recently, but at this point a hearing aid won't help. I still have more hearing in the MVD side than I thought I did, so there may be some hope in the future with advancing technology.

Even with the hearing loss and what I will describe as a very difficult 2nd surgery, I absolutely, 100%, would do this again, knowing everything I know now. I am not happy that I lost the hearing but I am by far happier being spasm free. I will steal some verbiage that a gentleman in our group had written some time ago. He posted that although he really wasn't going to kill himself in reality, the thoughts had crossed his mind periodically, as they did mine. Before surgery, the spasms drove me so crazy out of my mind, and I found the constant contractions so incredibly irritating, and mentally exhausting to deal with, that I literally wanted to rip my face off. It is so hard to believe a person could feel this way, but I really did. I feel so completely happy just to smile, talk, eat, normally without the fears of this torturous disorder embarrassing me, and now I can just be one of a group of people, out in public, just living life. I know surgery is a very personal choice, but words cannot describe the change to a person's quality of life once they are free of this monster. I too, started out saying I would never have surgery. After my diagnosis, I was told meds, which probably won't work, Botox, which will possibly help, but would be more of a Band-Aid, or surgery for most likely a cure. I seriously thought the Dr. was whacked out talking about surgery, and I told him I would never have surgery and left. But, as we all know, HFS is progressive, and mine became worse. Then I decided I absolutely couldn't live this way. So here I am 2 years and 2 surgeries later, and 1000 times happier.

Julie Holzhauer

Update as of 10/08/2009 (mvd April 5, 2007 - 30 months ago) - I have been spasm free for about 11 months now. Still have the sensation of my face wanting to have one but i dont. YAY!!

Barbara Homsey-Holliday

Update as as of 03/11/09 - For all those disappointed folks out there - be of good faith! As of the past several weeks my spasms have stopped almost entirely! It took me a good 18 months for the spasms to stop. So nice to lie down at night and not feel those constant spasms.

Jeff Johnson

I've been spasm-free since about 6 months after the procedure. During that time I had fewer and less pronounced spasms than before. I have a little bit of a twitch now and again, but these are barely noticeable. On the down side, I developed a severe case of hives starting about 3 weeks after the surgery, for which I had to see numerous allergists and was on a variety of medications for over 2 years before they were gone for good. As far as ongoing issues, my surgical site can hurt a little when the weather changes (perhaps from air pressure?), and I have a very slight "tremor" of my left eardrum at times.

Kathy Lyles

Update as of 01/12/08: I am spasm-free, after 15 months! I had not given up hope and have reached the goal--finally! I hadn't noticed any activity in a couple weeks, but I performed the test yesterday--I scrunched up my face--and nothing! I looked carefully below the eye, and it is calm. The ONLY abnormal thing I noticed is when I raised my eyebrows, there was a slight quick twitching in my eyelid, but when I lower my eyebrows, it is gone. That's close enough for me, to declare myself "SPASM FREE". I hope my news is encouraging to those of you who had an MVD, but aren't there yet. After the MVD the spasms were very different. They were less frequent and less intense. But they WERE spasms, so I was not spasm-free--until now! Hallelujah!

Robin Mayhew

No complications whatsoever. I awoke with spasms still there but they had decreased to very mild twitches around the eye within two months after MVD.

At three months post-MVD I realized that the spasms were gone... None of the usual "triggers" made the spasms start, anymore. Life is good!

Jack Pitcher

As of 10/13/04, It has been 2 1/2 years since my MVD with Dr. Kaufmann in Winnipeg. After the surgery I was about 85% better. I expected any further improvement would be complete within a year. My condition continued to improve past this point. Now I can say that I am spasm free and have been for about one year. Never give up hope!

Sheila Ronquillo

no complications after mvd procedure spasms still occuried for about 3 months then one day i noticed they were no longer there.

Debra Turner

Updated as of 03/15/04 (mvd Jan 29, 2004) - I had many problems post-operatively, such as an infection, mild Bell's Palsy, had another surgery to correct the infection problem and had the titanium mesh taken out of my head. Right now I am on home IV for antibiotics.

Comments: Updated as of 03/15/04 - I awoke from surgery spasm free but then the spasms set back in over the course of the next few days.At the present time I'm about 75-80% spasm free but I do notice it is worse when I'm tired and really bad when I yawn.

Updated as of 05/10/04 - Just to keep everyone up to date, my spasms seem to be very minimal. Some days when i am very tired, I notice them more. I do go into tonus when i yawn but it only lasts for a few seconds. I can deal with that. I would say that I am about 85% spasm free. I am so much better off than i was before I had the MVD and having a few spasms now and then just keeps it in check for me. It makes me realize why i had the surgery in the first place. I would say, that even after all the problems i had after my mvd, That I am glad that I had the surgery. If I had to do it all again, I would. The only thing that really bothers me is that I had to have 3 CT scans, with and with out contrast ( so really the equivilant of 6 CT scans) of my head because of the infection. I am a bit paranoid about so much radiation so it kind of freaks me out.

Tom Vance

I had MVD surgery with Dr. Anthony Kaufman Nov 26, 2002 in Winnipeg, Canada. I had minor "twitches" for some time after surgery. However, I am pleased to inform you that since July, 2003 I have had no HFS symptoms at all.

Karen Varbalow

About a year and a half after my surgery I had a period where I seemed to have hfs again, but my spasms have since subsided. I am still not 100% spasm free, but it is so close that I feel what little I have is inconsequential. My life has changed dramatically by having the surgery.

Max Wong

Update as of 11/12/06: Well, as for my recovery goes, it was an uphill battle. I am spasm free, although some flutters from time to time. The problem I'm having is facial paralysis. After the second surgery, the entire left side of the face was paralyzed along with the hearing, balancing, headaches, sleeping disorders, etc. I think just about all the post-op side effects that can happen happened, but that was expected. Over the next month or two, everything got better, except the facial paralysis and there's still some spasm around my eyes and lips. It wasn't until the eighth or ninth month that my spasms completed left. Although my facial paralysis has gotten better, it’s not close to being completely normal. At my annual check up, I can close my eyes (that was a relief, I was fed up with taping my eyes at night), I can't raise my eye brow, I can smile somewhat but can't smile to show my teeth on my left side (crooked smile), the facial symmetry is about 90 to 95 percent (this took a while, I was at around 70-80% till the 10th month). As I was told, for the next six month, it may get a little bit better, but don't expect any miracles, and after the 18th month, that's pretty much it. So, I accepted the conditions and went on. I feel that these conditions are far more livable than dealing with the constant facial spasms. Don't get me wrong, I don’t want to discourage anyone from having the surgery, as mine was a unique case, and probably with unique symptoms. If I had to do it over again, I wouldn't hesitate considering the surgery. (MVD #1 on 09/22/05 with Dr. Linskey).

Now 13 months post-surgery and the spasms are still present though noticeably lessened. After summarising and re-arranging the above lists, I find that 18 patients took longer and 47 patients took less resolution time than myself. Hope my fellow sufferers who are also waiting for the spasms to subside can find the same comfort as I have at this stage.

1Steve Anderson4 years

2Vickie Capps3 years

3Pamela Floyd 3 years

4William Farly3 years

5Dianne Joyce2.5 years

6Joy Lewis2.5 years

7Laura Nuessle2 years

8Sue Jackson22 months

9Fred Goodhue20 months

10 Rickey Werner 19 months

11 Steve Barone18 months

12 Mary Bruni18 months

13 Julie Holzhauer 18 months

14 Barbara Homsey-Holliday 18 months

15 Jack Pitcher 18 months

16 Karen Varbalow 18 months

17 Kathy Lyles 15 months

18 Cathy Larsen14 months

19 Kim Porter12 months

20 Jeanette Hansen 10 months

21 Marty Ridder10 months

22 Gwen Cameron9 months

23 Max Wong 9 months

24 Allen Brow8 months

25 Rose Marie Schmidt8 months

26 Lionel Wolfson8 months

27 Tom Vance 7 months

28 Bonnie Driskill6 months

29 Jeff Johnson 6 months

30 Angelia Kwok6 months

31 Peg Schuster 6 months

32 Donna Eng 5 months

33 Marty Geeves 5 months

34 Stuart Hicken5 months

35 Christophe Oustalet5 months

36 Bob Scrudato5 months

37 Rob Bindler4 months

38 Lawrence Lee4 months

39 Sonia Moore4 months

40 Debra Turner 4 months

41 Diana Fell3 months

42 Robin Mayhew 3 months

43 Sheila Ronquillo 3 months

44 Mike Wild 3 months

45 Kay Cooney2 months

46 Charlene Donna 2 months

47 Simon Dixona few weeks

Hello, I had MVD 3 months ago after having mfs for about 10 years. I still experience the spasms and was reassured by my surgeon that the spasms would eventually disappear but due to the length of time that I have had the condition, it would take some time. It was a comfort reading all your posts but also scary, thinking that it can take years for the spasms to disappear.

I have a question. I still experience dizziness when I move my head quickly and for the past few weeks, no progress was made. I am hoping the dizziness would eventually subside. What medication did you find useful in managing the dizziness?