MVD surgery 8 days ago

Hi Sean,

Thank you very much for updating us on your progress. Of course we are disappointed that the op seems to have failed, but don't you think it's early days yet considering that some patients have reported improvement up to a year later? Did the surgeon state categorically that the op has not worked without the mri results? or perhaps he explained why he thought so. I understand that in many mvd surgeries, lateral spread response monitors are used to predict the outcome. Readings are taken before and after the teflon pads have been inserted to confirm effectiveness.

If I were to consider a 2nd operation, I will probably to do at Pittsburgh where they seem to do this type of surgery on a daily basis (not that I can afford it financially).

Wish you all the very best sincerely.

Abstract

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.

yes, my surgeon said it has been a failure, so I have just to go on with what he says, my spasms are every bit as bad as they were pre op..very frustrating..

Sean.

Hi Sean and Leon

Thanks for sharing all of the above info with us all, and I am SO SORRY Sean that your consultant has given such a disappointing (understatement!) outcome from the op. I can't imagine how you must feel after putting yourself through so much trauma - you sound very brave, but I'm sure there's a bit of anger there too! I'm a betting woman, but when it comes to major surgery v risks it's a very hard one to call. I go for my pre-op assessment at the beginning of March and all the info you've shared will prove invaluable to me in asking the right questions. If only we all had a crystal ball so that we could predict the outcome eh.

And Leon......... yes, Pittsburg does sound to be the centre of excellence if money was no object. I'll keep buying those lottery tickets and maybe we can all meet up in Pittsburg!

Take care and keep smiling (sorry, sick joke!), Roseann/Angela

Hi Roseann,

I'm going to enquire if my healthboard would consider sending me to somewhere that has more experience in this matter, if anyone has knowledge if this can happen, I would be grateful if you could let me know, wheather it be in uk or outside uk...Pitsburgh for example !! I know we have certain rights to receive treatment, the proper treatment !

cheers for now, Sean.

Hi again Sean

I think that's a brilliant idea. I've no knowledge about anyone being sent outside the UK for treatment, but it's certainly worth asking the question (formally and in writing) in view of your unsuccessful experience. I guess you would need to gather the success stats from Pittsburg and present them as your best chance of cracking this problem.

I live in Hampshire but asked to be referred to Bristol because I knew that they had a lot of experience of HFS surgery. I started by having a private referral (cost me just over £500 for consultation and MRI scan) to Professor Coakham (who is 66 but has been doing these ops for many years). After getting his opinion I asked to be referred to the Frenchay where I am seeing Mr Nik Patel (who was I believe trained by Prof Coakham) on the NHS. I couldn't afford to have the op privately but felt it worth spending a couple of hundred quid on seeing Prof Coakham (who was so so empathetic and helpful).

Anyway, really hope this helps. Cheers, Roseann

Hi again Sean

I think that's a brilliant idea. I've no knowledge about anyone being sent outside the UK for treatment, but it's certainly worth asking the question (formally and in writing) in view of your unsuccessful experience. I guess you would need to gather the success stats from Pittsburg and present them as your best chance of cracking this problem.

I live in Hampshire but asked to be referred to Bristol because I knew that they had a lot of experience of HFS surgery. I started by having a private referral (cost me just over £500 for consultation and MRI scan) to Professor Coakham (who is 66 but has been doing these ops for many years). After getting his opinion I asked to be referred to the Frenchay where I am seeing Mr Nik Patel (who was I believe trained by Prof Coakham) on the NHS. I couldn't afford to have the op privately but felt it worth spending a couple of hundred quid on seeing Prof Coakham (who was so so empathetic and helpful).

Anyway, really hope this helps. Cheers, Roseann

Hi Roseann,

I have been playing the lottery regularly - Tue, Wed, Fri and Sat! and any other days if they had a draw too!!!

I am sure we will feel a lot happier then with millions in the bank account, spasms or no spasms :-)

Leon

Hi Raseann,

I'm aware off professor Coakham and his knowledge of this surgery, likewise so is my surgeon, he only works for the private sector now, but I'm going to enquire if it would be possible to see him through the NHS..nothing ventured and all that..he has done many of these..

Sean.

Roseann, sorry for the spelling mistake...

Hi Leon and Sean

I reckon spelling mistakes are the least of our problems! I really do think it would be worth challenging the NHS to send you to Pittsburg Sean, or at least to Bristol if they have better stats than your surgeon. I can't yet vouch for his operating ability, but Nik Patel at the Frenchay was like a breath of fresh air and he was also very honest about his successes/risks. I liked him as a person and he showed real empathy for our problem.

As for the lottery............... yea, let's all keep buying the tickets because rich with HFS is certainly better than poor with HFS! But, I'd settle for poor WITHOUT HFS and bet you would too.

Keep fighting the good fight, cheers, Roseann

Good Morning YKL

How are you and any improvements ? After you had your staples out how many follow up appointments do you have and were the staples removed at the National ?

I go to see about op on the 7th so am making my list of questions.

So the comments about a lottery win ? There is a Doctor in Beverly Hills California that does the MVD op and he does it by fiberoptic so not open brain surgery. Dr Shahinian. I googled that. Just think , could recover from op laying on Venice Beach !!!.

Ok back to real life. How long were you told that you would be off work ? I am self employed and work from home but work has dried up. I am being forced into this op because of the government. I would have got my state pension in November next year 2013. They have now put me to 6th November 2018 . Could have maybe winged it to 2013 but now have to find outside employment for 7 years and as everyone here knows, it is a nightmare going out and meeting people when your face ispulled and distorted , with a droopy mouth and eyelid. Does anyone else suffer from bad vision in the side of HFS ?

Regards.

Hi everyone

I've been reading with great interest all your comments, especially the one about the Beverley Hills surgeon who operates by fibreoptic! I have an appointment next Tuesday at the Walton Centre for Neurology in Liverpool, where I will have another MRI scan (the first one done locally did not show anything up) and then see Mr Eldridge to discuss whether or not surgery would be possible. Does anyone have any knowledge of this Centre or of Mr Eldridge? Sean, I'm very sorry to hear that your surgery was not successful, hope whatever you now choose to do works out. To everyone else - good luck with your treatments.

Sylvia

Hi Harleygirl and Sylvia

Just to say you have my huge sympathy re retirement not being possible and also the trauma of going for job interviews - it's an ask too many when you have to fight your face in stressful circumstances. I reckon there's a strong case for what used to be called incapacity benefit when you have this condition - certainly worth applying.

As for fibreoptic surgery - wow, I like the sound of that! I shall also be googling this surgeon and continuing to buy the lottery tickets.

All best to you all, Roseann

Hi Harleygirl and Sylvia

Just to say you have my huge sympathy re retirement not being possible and also the trauma of going for job interviews - it's an ask too many when you have to fight your face in stressful circumstances. I reckon there's a strong case for what used to be called incapacity benefit when you have this condition - certainly worth applying.

As for fibreoptic surgery - wow, I like the sound of that! I shall also be googling this surgeon and continuing to buy the lottery tickets.

All best to you all, Roseann