MVD surgery 8 days ago

Hi sm,

I'm constantly asking myself this quesyion, and so far can't decide wheather I would go for it again, it took me a long number of months to pluck up the courage to go ahead with it, as, right up to when I was getting wheeled into theatre,I was going to go home and forget it, but,I just went with it, but I'm just praying my spasms go in the near future, I have read of people's spasms stopping many months after surgery, so lets hope !

I worry that if I went for a 2nd op that this time I would loose my hearing, or some other problem would develope, I have been angry that my surgeon (maybe) has not been successful, it was dissapointing wakening from surgery and the spasms still present, so I hope soon,I can come on here and say they have gone.

I hope you have success with your surgery, as many do 1st time.

all the best.

Sean.

Hi Sean,

I hope that you will find the following article encouraging, read the 'results' and 'discussion' sections about 2/3 down the page

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711230/

It mentioned 3 months being the period for improvement to show, and even up to 12 months before deciding if a second operation is required. Hope to see you posting a message here with your good news soon, followed by my own!

Microvascular decompression (MVD) was described by Dr. Peter Jannetta. This operation is directed to the cause of the problem, vascular compression. The goal is to move the vessel (artery or vein) away from the vulnerable site on the nerve and provide a pad to prevent future compression. Complications can include infection 1%, brain fluid leak 3%, facial weakness 1.4%, hearing loss 0.86%, and stroke less than 0.5%. Successful spasm relief ranges from 79% to 95%. The difference in the groups relates in part to patients in the former group who had undergone a previous procedure. Recovery from the procedure usually takes six weeks. Patients are usually out of the hospital on the second or third postoperative day. They are fatigued, however. The spasm can persist in 44% of patients, taking up to 18 months for complete resolution. 90% of patients are spasm free by 12 weeks after surgery.

very interesting read my friend, many thanks for your input...cheers for now.

Hi Leon/Sean,

If you use the link posted above it will take you to a Page not found. This is because an http:// has been auto inserted into the middle of the link. If you type ncbi. after the www in the address on the landing page the article comes up. Or do a Google search on Prognostic Factors of Hemifacial Spasm after Microvascular Decompression and it is the first result.

Sorry for the inconvenience, I shall now go and report this as a fault to the developers. I also assume the "odd" text in the next post is info copied and pasted from the article. I shall also report the display of this as a bug.

Emis Moderator.

Hi YKL. Thankyou so much for your reply and I am sorry I have taken so long to reply to you. How are you doing ? Have you had some improvement ? I have an appointment to see Mr M next month and will then say that I want the op. Had my botox a couple of weeks ago . How long have they said the recovery from the op will be ? I have heard anything from three weeks to three months. Hope this does find you better. Thanks again.

Harley Girl

Hi Harley Girl, I am on day 36 post-surgery and I would say that I am back to about 90% full health physically. The only real discomfort I experienced was dizziness between day 10 to day 26, it went away after I started to take more walks outdoors. There is numbness around the incision area but not too bothersome at all. Unfortunately the facial spasms are still there, especially when I was eating or brushing my teeth. Time will tell if the surgery was a success. By the way, my surgeon was Mr K, not Mr M.

Did your last botox treatment give satisfactory results?

Thank you for your good wishes and all the best to you.

Good Morning YKL

I have found that the Botox can be a bit hit and miss into it's effectiveness. I can honestly say that only three times, over the last ten years or so,has it has worked. It must take the edge off it but it is always there. If I get stressed it is a nightmare even with the Botox and I find that going to bed and laying down makes the spasms go into overdrive. I know this sounds daft but I can almost here it all moving. So in general I would say that my Botox does not really help that much but dread to think what it would be like without it.

Did you have the Platysmal band problem on the front and side of your neck ? and if so did the op reduce that ? I have these areas injected as well but they only go down where the actual injection went in.

Did your surgeon replace the bit of bone that was removed for the op ? If not is it a problem ?

Kind Regards

Harley Girl.

Good Morning,

I did not have a band fitted round my neck pre-surgery. The spasms in my neck area only started a few months before the surgery. It seems that we had similar experience with the botox injections, that is what made us consider surgery as a last resort.

I did not have the opportunity to speak with my surgeon after the surgery but my follow-up session is at the end of this month, so I will find out more about what was done during surgery. I can feel something hard over the incision area, I guess the bone was replaced by a titanium mesh. You may include this question at your consultation with your surgeon along with a long list I'm sure. Did you visit the hfs-assn website? I gathered much helpful information there and they have helped me in my decision to proceed with surgery. In my experience at the NHNN, I find the whole procedure less daunting than that in the US and Canada. For example, I walked with the nurse to the op theatre instead of been wheeled around, the iv tube was inserted after I passed out, I did not see the surgical team with all the equipments, I did not stay in the ICU and I did not have a catheter fitted when I came round. Hope this gives comfort and encouragement to others about to undergo this surgery. (without prejudice I hasten to add!)

Hi ykl,

I did not see my surgical team either, my cathater was inserted during my op, and removed when I was in ICU afterwards, I was in ICU for 2 nights, and 1 night in the ward, then went home, only to get a wound infection the same night, that was not pleasant at all.

But 3 month down the line, I'm back at work, still got spasms, some days worse than others, go for a chat with my surgeon next week ! that will be interesting.

Hi Sean,

My spasms are still there, and like you, better on some days than others. May I ask in which hospital did you have the surgery done? The minor details (such as walking to the operating dept) of the whole procedure may seem trivial but make a big difference to my whole experience. I wonder if your stay in the ICU for 2 nights and the insertion of the cartheter were part of standard procedure or out of necessity in individual cases. You were discharged very early by comparison, was it your choice? I told them that I live alone and they allowed me to stay until I was ready to go.

Do let us know how your follow-up session goes next week. Like you said, it will be interesting.

Best wishes

Leon

Hi,

The cathater is needed for most major surgery, it's not a problem.

I was taken down to a pre op room before my surgery, and that is where they put me to sleep, so I didn't see any of the surgeon team other than the aneasthatist, it is the best way I think.

Yes I was home too quickly, but I did have the option to stay another night, but at the time, I felt strong enough to go home, I should have stayed another night.

I was low on energy/strength for a couple of weeks at least, my hearing was saved thankfully, I was worried about that, still have no feeling around the wound area, not sure I'll ever get that back, it's a wierd feeling, having 'no feeling' on part of your skull.

Anything else I can help you with, just ask, no problem.

Sean.

Hi Leon, Sean and Harleygirl

Thanks for sharing all of the above information. I'm a 61 year old old girl and am 'on the list' for surgery. I've had the condition for 8 years and it varies between complete remission for up to 3 months to full-on spasms which affect every area of my life and my ability to relate to people face to face. I wear sunglasses much of the time in the silly belief that I can hide my crazy-looking face behind them.

I wish you all the very best of luck, particularly Sean and Leon in your recovery. You've been so brave in having the op and it would seem horribly unjust if you didn't feel the benefit. My thoughts and prayers are with you both as you fight back to full health. Do hope that you are braver than me Harley Girl and that maybe, just maybe, we can all be rid of this life-changing condition in the fullness of time. Trust us to get something rare and unbeautiful eh! Good health and good luck to you all, Roseann

Hi all you HFS sufferers,

Had my post op chat with my surgeon today, 3 months after my op, he said the op has not been a success...!! round 2 coming up ! now waiting for another MRI scan, then it's looking like another MVD..pissed off or what ? the thought of going through all that again, it's frustrating it didn't work 1st time round...just keeping you posted..hope your all well.

Sean.