Any advice for possible MVD surgery

Hey there,I have been referred as I was on tramadol for 10 years and at Xmas I developed serious head pain..nothing would take it off so I was overdosing on them..I am seeing a psychologist who I told I would kill myself if no one helped me..so she told the doc and I just stopped the tramadol..the withdrawals are terrible..but iam fighting it and feel really proud of myself..I have only been on the carbamazepine a few weeks..but feel really anxious..not sure if it's that or just coping with everything..iam only 39..and apparently this was caused by a car accident 20 years ago which has progressed to constant pain anywhere on the right side of the head!..iam completely at the end of this..would the surgery help?..but terrified in case it goes wrong or that it doesn't work!..thank you for replying it feels like your only one with it as no one understands it and no one can see it!..many thanks for the hugs..X

You're welcome, I've had issues with pain for about 12 years, recently diagnosed with a connective tissue disease, something like Lupus, and now I have a confirmation that the pain in my face is TN. I know what it's like to feel so low that ending it all is a 'good idea' but please don't, there is hope and a wealth of support from the members of the forum. Persevere with the medication, is will help, it did for me. I have a few stabs or shocks a day now instead of the many hundreds. If only my joints were less painful too I'd be a new woman!!

Best wishes

Hey there, I live in Leicester and was at max fax for years who kept telling me there was nothing wrong with my face or joint!..after I heard about Mr Sidebottom (I know!)..I had to fight with the GPS to get there..he found the bad joint and said it was not classic trigeminal pain?..it was only after I got the scan results(day before Xmas eve)..that the pain doc just said there was two nerves trapped between the artery in the inner auditory canal!!..and would fit in with a diagnosis of trigeminal neuralgia?..and needed a urgent referral to the neurosurgeons!....I see them on the 27 Feb....no body has sort of explained what it is and how it has happened and what will be done apart from drilling into my skull!!..so fed up and I have been completely neglected with this and just seem to be pushed around different consultants!..help!..thank you for replying..

Also are you having your op at QMC?..wow you are brave and good luck🙂...is it a big operation?..what's your recovery time?..x

Hello

I work at the uni there but live in the jungle iof Suffolk. So I'm having my MVD at Addenbrooke's Cambridge with Robert Macfarlane. Pre-admission session is on 01 March and what with all this apprehension etc I'm hoping my BP will remain low enough for them to decide I'm a good risk. A brainstem or cerebellar bleed/stroke is what I definitely don't want!!

Good luck to you too - keep in touch

Cheers

Big D

Wow, I didn't realise addenbrooks did it..thought just Notts and Leeds!...I have been told I will have 4 of the best brain surgeons in the uk?..I have MR Basu!..I have checked him up and it says he specialise in trigeminal?..still worrying though!...people who have had the op say the pain almost goes instantly!..so try and focus on that..and they wouldn't do it if they thought it was dangerous..I can't cope with the pain so if it sounds ok then I'm risking it!..it's a terrible illness I will be thinking of you and you to keep me informed!!😊X

Actually I think there a quite a few centres of excellence for MVD and similar procedures. A friend of mine had hers done at a large teaching hospital in London; the Southampton group are good, so does the naval hospital in Portsmouth group have a great reputation. Nic Patel at Bristol has done hundreds of these and I believe he's used fibre optic (key hole surgery) for this as well. One of the members of the UK Trigeminal Neuralgia Association is a real big fan of him.

We'll keep in touch of course. Have you tried joining the TNA? Lots of advice and documentation and forums.

Cheers

Big D

Hi

My husband had his MVD done by Mr MacFarlane at Addenbrookes, June 2015, it was a complete success & he hasn't had any pain since.  Although the drugs worked for many years they took part of his personality away but since his op he's back to his normal self.  No operation is without it's risk but for us it was a life saver, Mr MacFarlane & his team are fantastic, I can't thank them all enough!  I sincerely hope that you have the same experience, good luck!

 

That's a great help Tom's Mum! Thank you for that information. As with your husband, my "personality" has changed a bit subsequent to these high doses of Carbamazepine etc (and so my friends tell me also). I can't wait to get some semblance of life back. Good news about Robert's team at Addenbrooke's. I'll keep the forum informed of my progress in a few weeks

Cheers

Big D

Whilst the drugs work & that's great they do seem to "rob" part of a persons personality but at least they give relatively pain free day to day. After the op it takes a while to wean off them but we've not looked back since then.

You are in good hands......do let us know how you got on when you're able, if you have any questions in the meantime ask away.

Hi 

Do you mind if I ask how you know if your surgeon is supposed to be good?  I've recently just started to see Mr Andreas Demetriades in Edinburgh, his site say's he specialises in TN but I don't know how to find outside information on how good they are.  I am awaiting him checking if my previous MRI scan were high res or not.  They showed me not to be eligable for the DMV but if they're not high res enough he wants another to be sure.  If not he wants to do the glyserol injection.  He seems very knowlegable.  My big fear is the slight chance of making it worse, the thought of being in more pain scares me so much but I know it's a slim outside chance.  I hadn't heard of the brainstem or cerebellar bleed/stroke though, that seems very scary too.  It's all so much to take in being being on these horrible meds for so many years is screwing with the body and mind too.  All the best for your operation, it sounds like you're in good hands which is great to know!

Hello TomsMum and also Wavedancer. So glad your recent MDV was a success W.

I go in for my pre-admission tests at Addenbrooke's Cambridge tomorrow morning and then if everything is OK, my operation is on Thursday 9th March. Mixture of feelings about this; apprehension certainly (the risks) but looking forward also to the opportunity of being pain free and getting my life back. You guys on this forum have given me some good confidence about this - thank you!!

I am indeed a big bloke, 6ft 3" with 42 inch waist and taking some ACE inhibitors and another drug to keep my blood pressure in check. I don't think they mind too much about the drugs as long as your BP is controlled effectively. Here's hoping I don't throw a wobbly and show a white-coat-related surge in BP tomorrow and then we'll all be set for the op.

I'll keep you all informed

Cheers

Big D

Hi Big D

easy for me to say but try not to worry, my husband was around the same size as you & on blood pressure tablets too.....he had no problems post op & even better because he feels normal again has lost loads weight as able to  get out & about.  He is back on the BP tablets but I'm sure not such a high dose. 

Good Luck, I'm sure you'll be fine, don't think about the white coats!

 

Oops Big D....blame it on the Tegratol! You've waited a while for this

op, don't back down now! My gp ended up putting me on BP tablets

to manage my white coat syndrome, and they worked thank goodness.

When the district nurse took it on Monday it had gone to the other

extreme! You'll be fine and think of the positives. No pain! Let us know

how you get on.