MVD surgery 8 days ago

Chris,

Just tell the gestapo to watch the clips on you tube if they have any doubt, as we all know, you can have a few hours with little spasms, then, wallop, spasms going rapid for the rest of the day, it depends on a lot of things, the change in lighting, the wind triggers it off, even starting to speak, when I go into my office, I just put my hand up to say 'Good morning', cause if I actually say the words, my face goes all spasmy, it's a horrible problem, horrible, my next mri is next wednesday, and it's MVD no2 for me !! better work this time..don't let the benefit 'rats' cheat you out of your benefit mate, get a lawyer if need, we should all take them head on, after all, the people with drug abuse problems get their Methadone etc, so why would they refuse us with a genuine Disability, as that is what this damn thing is...

cheers the now friends.

Sean.

Hi Sean,

Just wonder if you still feel the numbness around the incision area? I have a little tip to share. Up till about 7 weeks post-op, being the wimp that I am, I have avoided touching the incision area at all and lie only on my right side when I sleep. I was even weary that something might fall out with the barber's comb when I had my first haircut in 2 months! But since I started gently massaging the left side of the skull with my finger tips and also lying on both sides when I sleep, the numbness is fading fast. Now the right side feels completely normal and the left is only very slightly tight. Maybe I should have started rubbing it gently much earlier. I did not receive these instructions from the hospital when I was discharged. Hope this helps.

regards

Leon

Hi Leon,

No I'm still numb mate, all the right side side of my skull, if I'm going for a 2nd op, god knows what it will feel like post op, don't think the feeling will ever come back.

I cut my hair the 3rd week, gently, but it was ok, strange feeling, having no feeling !! if that makes sense, my wound still leaks very slightly, I notice it on the pillow in the morning, and that was November I had my op, still got the spasms, as bad as ever.

Sean.

hi everyone

so been to my medical examination today and had to see a doctor this time, had to laugh to my self as he was polish and the language barrier wasnt brilliant as i had to keep asking him to repeat himself (no offence to polish people at all by the way, i have a polish friend) anyway all i could think was if this guy fails me yet again what makes him so much more special than my doctor and the doctor at my tribunal who overturned the first failed medical in the first place... apparentley HFS isnt that bad and where all making a big deal about it according to the DWP... so whats it going to take an operation that could leave me deaf or god knows what else..anyway hope your good out there at the moment...all the best

Hi Chris,

I have the same dilema, I had yet another MRI scan yesterday, so I'll wait and see this time....I know what your saying, why should the surgeon have 'another go', what happens if you wake up, and you still have spasms ?? I would go mental mate, try and get a more qualified surgeon, I know that aint easy, but it frightens me to let the same surgeon go in again, and who knows what would happen, hearing, facial droop, can't swallow !! the list is long.

My spasms are infact worse than they ever were, and that's having the surgery, it's easy for the surgeon to say' oh well, we'll have another bash' it's our damn head they are playing with, why don't they get it right 1st time ?? my answer is, they have not got the experience, apart fro Professor Coakham in Bristol, he has done many, the other surgeons, well, they just don't get this problem often, so, it's a hit or a miss if they get it right I'm afraid.

So you will be the same as me mate, waiting on the decision being made for op no.2, scares the hell out of me, having to go through all that again, in some respects, I wish I lived in America, at least you would be sent to Pittsburgh, they do an average of 90-100 a year, all be it, you would pay for it, no NHS there.

I would like to know, what is said to the surgeon when his surgery 'fails' ? is anything done ? or is it, oh well, never managed that one ? anyway, keep us posted mate, and I'll do likewise.

Sean.

Hi Chris

For goodness sake, it's bad enough trying to get the English-speaking medics to understand HFS, let alone someone who has probably never heard of the condition either in Polish or English! If they do turn you down for Employment Support Allowance then I reckon we should get some publicity for this condition and go high profile with it. We could certainly manage a petition I'm sure! Let us know how it goes eh and good luck! Cheers Roseann

Hi again Sean

So so understand why you are apprehensive about a second op - I'm losing my bottle for the first one! If it's of any help, the surgeon I am seeing (Nik Patel at the Frenchay in Bristol) was trained by Prof Hugh Coakham prior to his retirement and has six years experience of operating on HFS with a similar set of stats to the Professor. So, Bristol just could still be the right place to go via the NHS. Anyway, that's what I'm pinning my hopes on if I go ahead in June. Cheers, Roseann

hi everyone

so as i persumed i failed my medical yet again, aparentley the laws changed so what i scored points on my tribunal before dosnt even exist anymore, seems they make it up as they go along..so think my hands been forced to phone my surgeon and to go through with the surgery now...just hope there happy if i suffer from any side affects...is there anyone out there who had a successfull op, be very nice to get a report from you please as im really scared now

also ive seen a few posts about people having the nerve operated on and how they need to let the nerve recover, this is confusing me as my surgeon said all he would be doing is seperating the nerve and the blood vessle with some sort of material

Hi Chris,

Sorry to hear of your (presumed) failed medical.

As for your question regarding the nerve taking time to heal after mvd surgery, perhaps you can ask your surgeon whether his hfs patients were spasm-free immediately post-surgery, or do some experienced delayed cure. Should he say that if spasms are still there (at the 3 months follow up) then the surgery has failed, I would be doubtful of his credentials because many patients have reported spasm-free status many months, even years after surgery. I have reproduced below an abstract I posted here previously. It may not make sense to laymen but a quick 'googling' will explain many of the medical terms used.

Lateral spread responses (LSR), an electrophysiological characteristic of hemifacial spasm (HFS), can be recorded during surgery. This work aims at evaluating the prognostic value of the persistence or suppression of the LSR at the end of the microvascular decompression (MVD) procedure of the facial nerve. Thirty-three patients with HFS, which had been evolving for 5.5 years, underwent MVD with intraoperative EMG. Monitoring required the placement of a needle in the frontalis and mentalis muscles. Responses were recorded after stimulation of inferior or superior branches of the facial nerve to search for abnormal ephaptic LSR. Preoperative abnormal LSRs were present in all patients. In 23 patients, LSR disappeared with vascular decompression and was not present upon closure. Among those patients, 20 were considered clinically cured and three still presented with mild/moderate spasm at 3-month follow-up. At late follow-up, 22 patients were free of spasm. One patient had recurrence of spasm at month 10. On the contrary, 10 patients had persistent abnormal LSR upon closure. Among those, seven were cured at early follow-up (3 months on average), whereas spasm disappeared at late follow-up (12 to 36 months) in the other three patients. The prognostic value of LSR monitoring is questionable; a good clinical result may be obtained in patients who presented with persistent LSR at the end of MVD. Delayed cure strongly supports the hypothesis that HFS is not only due to the mechanical pulsations of the elongated artery against the root exit zone of the facial nerve, but also to demyelination of the nerve and/or hyperactivity of the facial motornucleus generated by the neurovascular compression

Hope this helps.

kind regards

Leon

hi ykl

i always forget to ask this and ask that when i see him its like i have a mental block, think i should start writing questions down..hes a surgeon at the royal hallamshire hospital in sheffield which is on the nhs so its not like its private weather this makes a difference or not i dont know but upon speaking to him hes very nice and makes it sound like he knows what hes doing, i think if i dont go through with it i'll always be left wondering.. but thanks i'll be sure to ask him about previous ops he has done..the only thing i know for sure is how miserable it makes you feel..sorry for the awfull spelling mistakes, suffering with the sapsms now as i type

spasms not sapsms...wow and people think you can just live a normal life with hfs

Hi Chris,

Your fellow HFS sufferers here know how miserable the condition makes us feel - that is why some of us have opted for surgery despite knowing the risks involved! It is not an easy decision, I don't think anyone has agreed to go ahead at the first consultation with their surgeon (unless they have to pay for it privately).

wishing you all the very best!

ykl

i see you were the one who started this discussion, sorry very rude of me i ment to ask how you were doing these days

Hi Chris,

Thanks for asking, I am getting better day by day, the numbness on my skull has almost gone and the spasms are noticeably less frequent. I shall certainly drop a note here a week after I am completely spasm free (a week just to be certain! lol).

Hi guys,

Hope you are all managing with this damn condition.

I got the results of my mri, it shows yet another loop adjacent to the sponge that was placed in on the 1st mvd, so I am just waiting to see what is next !! me thinks it's mvd no2...not a pleasant thought, if only it had worked the 1st time !! how many times have I said that !

I'll keep you posted folks, chin up and all that, a wee word to those of you just thinking about going for the op, GO for it, think of living the rest of your life, twitching, winking, face being screwed up at the most awkward times etc, it is a poor quality of life, as we all know, this lives with you every minute and second of every day, it does take over your life...I should know, had it now for 6 years, and had 1 mvd...so, just go for it, and get your life back..

All the best.

Sean.