MVD on the NHS

#1

Hi everyone

I have had TN for the past 4 years although for 2 of those years I was pain free.

Since last summer I have had a lot of pain, one episode was constant which totally freaked me out, and made me visit our local hospital. They admitted me overnight, and then referred me to a neurologist. I was fortunate enough to have private medical insurance so was able to see a consultant and have an MRI within a week. I was diagnosed with a 'vasular loop on the right side of the trigeminal verve root entry zone'.

I've been taking pregabalin along with carbamazepine which makes me like a zombie.

I have revisited my GP as I can't continue with the pain and the medication and am now seeing the consultant through the NHS to discuss MVD. Unfortunately surgery is not covered by my health insurance.

Does anyone have any experience with this surgery on the NHS?

Grace

#2

I'm sorry Grace. What is the NHS? Sending you positive thoughts and prayers.

#3

It's the National Health Service here in the UK :-)

I gather the MVD is a pretty expensive procedure, so I wondered if the consultants would try to steer you away from it. I had to wait 6 weeks for an appointment to see my consultant, so can only imagine how long I would have to wait for an operation of this kind.

#4

Hi Grace ,

Patient .co. uk is a good site for getting info about whatt treatments are available on NHS

Ann

#5

hi ,have a look on the TNAUK site many people on there have had a MVD

I think many surgeons in the uk will recommend MVD when a compression is found as they believe a MVD has more chance of working if it is carried out BEFORE rhizotomy or gamma knife .

6 weeks is not so long ,i had a much longer wait .

#6

hi ,have a look on the TNAUK site many people on there have had a MVD

I think many surgeons in the uk will recommend MVD when a compression is found as they believe a MVD has more chance of working if it is carried out BEFORE rhizotomy or gamma knife .

6 weeks is not so long ,i had a much longer wait .http://www.tna.org.uk/

#7

Thanks everyone.

I just hope they agree to the MVD, although actually wanting to have brain surgery seems a little mad!

My father in law had the operation around 15 years ago and has been pain free ever since.

#8

Hi grace

I have had two MVDs on the NHS at Frenchay Hospital, Bristol. I had waits of up to 6 months. If they consider it to be extremely bad they will try to get you through quickly. Just need to speak to your consultant about how bad you feel.

Good Luck with it.

Clare

#9

I looked at a number of TN specialists in the UK to have MVD done privately, I couldn’t find any that had the specialist equipment available, am now having MVD on Tuesday at Royal London NHS, will let you know my experience post Op.

#10

I’m actually seeing the same consultant on the NHS that I actually saw privately so figured it would be the same with regards the surgery.

Good luck Quickie with your op on Tuesday, will be thinking of you.

#11

Hi Grace, I had Mr Wadely who whilst you can see privately will only perform the procedure under the NHS, Royal London hospital. I can’t rate him enough, he is clearly a very skilled surgeon and specialises in TN. Once MVD was agreed, I was in within a fortnight!



Grace said:

I’m actually seeing the same consultant on the NHS that I actually saw privately so figured it would be the same with regards the surgery.


Good luck Quickie with your op on Tuesday, will be thinking of you.
#12

Two weeks, that's super fast.

I'm still waiting for a letter from the neurosurgeon - not sure if it will be with a date or if he wants to see me himself before the surgery. I've sort of resigned myself that it could be as far away as July - I've based that on the NHS target of 18 weeks from referral to treatment.

Although sooner rather than later would be better as my pain has come back with a vengeance and I'm having to up my medications. :-(

So how did your op go?