MVD surgery 8 days ago

Hi Harley Girl,

It's been exactly 7 weeks to the day I had my surgery, and I am feeling as well as one can hope after brain surgery! In fact just these last couple of days, the numbness on my skull seems to be confined to the area around the incision and more importantly, the spasms are noticeably less frequent. I am going to see the professor at the botox clinic this Friday followed by a consultation with the surgeon next Wednesday.

I had the staples removed 7 days after surgery at my gp's surgery. The practice's nurse told me that she has removed staples and stitches from patients very regularly. It was a completely painless process. There were 15 staples on my incision altogether. The staples came off swiftly, I guess if they were stitches I would have felt the pull! ouch!! and I kept the staples as a reminder :-)

There is a list of 70 frequently asked questions on the hfs association website that you may like to read.

MVD surgery by fibreoptic sounds great, but with so few results to go by, I don't feel too confident about it.

I am also self-employed, so I did not ask for a sick note. At a push I guess I could have worked part-time after 6 weeks and now 7 weeks later, I am ready to work normally again. My energy level has gone back to pre-surgery level.

Do let me know if I can help in any way, I know only too well what an anxious time this can be.

best wishes,

Leon

It's just over 8 weeks since my mvd surgery, and I had my follow-up consultation at the NHNN today. Unfortunately, I was not seen by the surgeon who carried out the surgery but by another surgeon. I was told that 2 pads were applied to separate the offending arteries from the facial nerve, and only time will tell if the spasms will subside eventually.

I did enquire if the twitchings were monitored during surgery but did not get a clear reply. With hindsight, I should have persisted :-(

Hi Leon

Sorry to hear that your appointment wasn't very satisfactory today - it's all in a day's work to the medics but so so important for the patient to get full and decent information. I have to have neurophysiology tests before my MVD op - did you have these too? My surgeon told me that he needs this in order to monitor responses during the op. Really hope you get some remission or cure very soon - I can't imagine how it feels to have gone through all of that and then be back where you started. Take care and hope you're not too disheartened by today. If you are then insist on going back again and speaking to the person who did the op. I've always found that the consultant's secretary can be very helpful with things like this. All best wishes, Roseann/Angela

Hi Roseann,

Thank you very much for your kind words of encouragement and helpful suggestion. Even if the surgery fails to stop the spasms, I would not regret taking that decision at all, as they say - you'll never know till you've tried. I should take my own advice and be 'patient' (we are so called for a good reason!) even if it takes months and years. I can understand that surgeons would not want to raise our expectations, it's better to under-promise and over-deliver rather than the other way around. The surgeon did mention that a surgery has failed if they are unable to find or dislodge the offending blood vessel (not quite the exact words but my own interpretation).

I had a pre-admission assessment a week before the surgery. I had my medical history recorded, blood test, ecg, reflexes etc which lasted just over an hour.

Do let me know if you have any questions, I will only be too pleased to share my own experience.

best wishes

Leon

Good Morning Leon.

I am very sorry to hear that your follow up appointment was , in a word , pants and a shame that you did not get to see the surgeon . Roseann said about going to the consultants secretary and this is the best way. I moved my appointment forward by 6 weeks going down this route. I am going to the NHNN next Wednesday to see Mr M and confirm that I have to have the op and wondering if there are any questions you wished you had asked before the op. We all come out wishing we had asked this or that even with a list of questions. Hindsight and all that. I will also now ask if my follow up can be with Mr M.

If , in a few months it seems that the op was not a success would you have it done again?

Kind regards Denise. formally Harleygirl !.

Hi everyone

I had my consultation at the Walton Centre for Neurology in Liverpool on Tuesday. As I live so far away from the centre (Cumbria - 3 hour journey each way), they were very good and scheduled a further MRI scan (the first was done locally and didn't show anything) in the morning and the consultation in the afternoon, so I didn't have to make two journeys. This time I had the dye injected to enhance the blood vessles on the scan. When I went into the consultation, the nice lady consultant had the scan on the screen and could point out the offending vein/artery. I had a list of questions; catheter required - no, drain - no, ICU - no, anti-sickness drug in anaesthetic - yes, lateral spread monitoring - yes, but they don't call it that, fibreoptic (microscopic and endoscopic technique) used in surgery - it appears no but she did explain something medical that to be honest went over my head, pain relief given - yes. The one thing I forgot to ask is do I have all or part of my head shaved? That's the least of my worries I suppose. I'm terrified but have asked to go ahead with the surgery. I can't be like this for the rest of my life. They are going to see if I can have the pro-op assessments done locally to save me another journey and the chap who injected the dye couldn't have been more gentle (it was quite painless) so I'm looking at these as good signs. Will keep you posted.

Sylvia

Hi

Forgot to tell you - the lady consultant said the piece of skull bone removed is not replaced nor is a mesh piece put in - the hole is left open. She said this is not a problem and does not leave the head vulnerable to damage in the future (unless you are very unlucky). I suppose it relieves the pressure post-op? Hope this and previous comment is of help to someone. If I remember anything else I will post it.

Best wishes to you all.

Sylvia

Hi Denise,

I think there is a fairly comprehensive list of the 70 most frequently asked questions on the hfs-assn website. I have tried but failed to get a clear answer to their success rate of mvd surgery. I have a feeling that they are dampening expectation, which I can understand their reason for doing so.

I would give it at least a year to 18 months before considering MVD #2. Reading the experiences of those with delayed cure (see the other thread that I have started on 18 Feb spasm-free post mvd surgery), I remain positive that I may yet see improvement to my condition.

Hope that your consultation session next week will help you decide whether or not to proceed.

All the best

Leon

Hi Sylvia,

Good to hear that you have decided to go with surgery, I have been through exactly the same stage where my overwhelming desire to rid of the spasms has surpassed my fear of going under the knife.

But after it has all been done, I know that many of those fears are needless. As I mentioned in one of my previous post, going to the dentist to extract a back tooth gave me more pain and anxiety than MVD surgery! Since you live so far away from the hospital, I would advise that you stay in the ward for as long as they allow you, until they are sure that there is no csf leak post surgery.

Kind regards

Leon

Forgot to mention - don't bother with your hair, they did a very tidy job shaving the area for the incision, after I have gone to sleep! But perhaps you would like to keep your hair short so that it is easy to wash during the first few weeks after surgery.

Hi Leon

Thanks for those comforting comments - since I got over my fear of going to the dentist a long time ago, I will try and think that way about the surgery. I must say the lady consultant painted a very black picture of post-op agonies. It sounded like the hangover from hell multiplied by 100 - vomiting, headache, dizziness etc. not to mention whatever other pain I would experience. Anyhow, I believe it's only for a day or so? I will just have to be stoical and go with it.

My hair is shoulder length so I guess I should have it cut at least a bit (don't suit it very short) for this "ordeal".

I'm getting more nervous by the minute - don't know what I'll be like when I receive the letter giving me the date of surgery! Do they still give sedatives to people going under the knife and if so can I have one now please?

Keep the reassurances coming, Leon!

Sylvia

Hi all twitchers !!

I have been catching up with all the threads, some interesting fears etc.

sylvia, i

I''m surprised you have been told they will not replace the part of your skull, they did with me, they can't just stitch you up without a covering !!

My MVD failed, all this talk of waiting a year or so for your spasms to go is just wishing !! I asked my surgeon, he said, if your still having spasms, the problem remains, simple, his words.

I'm going for yet another MRI with dye injected this time, so, I'm afraid it's MVD no2 for me, not happy, but if he succeeds this time, well I will be, if he doesn't, don't want to go there.

I was sick as a dog the 1st night post op, then it wears off, you still feel unwell, after all, it's a major brain operation, but a couple of days, especially if you have got no spasms, you will be on the mend...my spasms were still there, and I was feeling bad re this.

Just thik of this, when your wheeled into theatre, the next time you open your eyes, you will hopefully be cured !! that's the goal, I wish you all the very best in your future operations etc..good luck.

Sean.

Hi Sean

Thanks for keeping us all posted about your 'progress' - you must be gutted, but thankfully you aren't losing heart or hope. Totally agree with you re Sylvia being told that they would not replace the small piece of skull - my consultant told me that they would 'glue it' back and that does sound logical and sensible.

Wonder if you've considered going to another centre for a further op? I'm not sure I'd remain loyal to a surgeon who hadn't sorted me out the first time....... But, there again, I've not made it to op number one yet so I might change my tune later in the year, if I decide to go ahead with surgery.

Wish you all the very best of luck in getting sorted. You have already been very brave and you deserve much better luck next time. Keep smiling (ha, ha), Roseann/Angela

Hi Roseann,

I'm trying to discuss other options at present re another surgeon, but, I suppose the surgeon won't be happy either, so maybe he will want to fix it 2nd time round, it's one of those decisions, so I have to chat with my gp next week, to see where we can go, but my next mri scan should give a clearer picture, I just wish they would have put the dye through 1st time around, maybe they would have seen the problem better, but hey, that's why they are getting the big bucks eh !!

Re smile, LOL, I hope I can smile soon, instead of avoiding nearly everyone, or every situation, this HMS is the damndest thing, it really takes over your every hour in life, it would be great if someone could come up with an easier, less invasive way of curing this, and as for Botox, well, I have commented before, a total waste of time and money, get the patient the surgery at the start, it would be better for the patient, and better for the NHS budget also, say approx £15000 for surgery, well, 5 years or more of 5 injections of Botox every 3 months, do the maths !! would make sense, if the proper surgeons were in post that is..

Talk soon to you all...take care my friends.

Sean.

Hi again Sean

This 'group of friends' know exactly how you feel and how this condition takes over your life and, in many ways, wrecks it. For this reason you have a RIGHT to the best treatment and the best surgeon, be he/her near or far from where you live. It may be best to do some really thorough research into the surgeon with the best results (Dr Janetta in the USA by all accounts but not sure in the UK) and then ask to be referred to it. I think you have a very very strong case for being referred to the most successful surgeon available and it's probably worth taking a bit of time to ensure you get the best. I wonder if any of our group has written to every surgeon in the UK who does these ops and asked for their statistics over say a 4-year period? This would be a massive help to us all. I'll give this a bit of thought.....

In the meantime, sorry for being so 'gobby', but, trust me, I understand the impact of this condition and I don't think mine is half as bad as some other's.

Keep trying to smile.......... All best, Roseann