Any Scottish sufferers who have had surgery on NHS?

My husband at the end of his tether withTN. On 3 different tablets and still in agony. Hospital says he’s not in enough pain to justify surgery. He can get surgery done privately but only in England and obviously we would need to pay for this. Just wondered if anyone had surgery done on NHS in Scotland.

Hi - I live cumbria and had surgery in Liverpool? Can you not be referred to a hospital in England? I paid for one private app with a neurologist who then took me on the nhs list - this was at Walton who were brilliant.

Sorry to hear your husband is suffering, this is a terrible affliction I wouldn’t wish on anybody. Let me know if this is of any use and I’ll forward you the name of neurologist I saw. Thanks Victoria

Hello, he’s had an appointment in Glasgow with consultant done through private health ins. Apparently no-one in Scotland does it privately but I wondered if it could be done on NHS as our health ins isn’t enough to pay for the op and we will have to pay for it ourselves. He’s in discussions at the mo to get a scan etc but will need to go to England for this and probably any surgery too. Can I ask what surgery you had? message me privately if you want. Thanks for your reply - reassuring to know we aren’t alone in this - it’s a horrible illness xx

Hi - I ended up paying for a consultation because the neuroligist in cumbria refused to see me. So I arranged an appointment with dr Weismann at reacres hospital near ormskirt Lancashire. He works for Walton hospital - which is a specialist brain and spinal hospital. My scans were done at Walton on the nhs, then I was referred to professor Eldridge - who specialises in this condition; I had an mvd operation in Sep 2014- and woke up pain free! Newcastle Royal is also a really good hospital for this - and maybe closer. If you can ask for a referral to either Walton or Newcastle - I think you can do this through the nhs. If you can manage the trip - Walton is a world class brain hospital and dr Weishman & prof Eldridge are world leading neuro people. The system is extremely frustrating & can wear you down - my husband fought for me… I couldn’t speak without triggering a shock. Your husband will appreciate you fighting for him - although with the pain he’s in he may not be able to express his thanks? Also there are lots of different medications - I tried about 10 different combinations before finding something that worked for me. Everybody is different.

I’m here if you need to chat. Big hugs to you and hubby… Victoria X

Hi Pinkvic,When you went privately to see a neurologist and he then put you on his NHS list did you then have to wait the usual six to eight weeks to be seen by him again? I live in Oxon and am getting so discouraged with my GP who admits he knows little about this illness that I am thinking of seeing a neurologist privately.I waited over five months to see the pain management dr who also knew nothing about this affliction.I am in pain and so tired of waiting …I just need help quickly…thank you so much! Oh what medication combination are you on? Thanks again!

Hi - no I didn’t wait too long, I think about 3 weeks for a MRI scan at Walton, then I went back to see dr Weishman at Walton about 2 weeks after the scan. It’s a longer wait to see the neuro surgeons though. Current meds - pregabalin and amitripaline ( I couldn’t take carbamazepine - as it gave me heart palpations - but it was good for the pain). It was the best money I’ve ever spent to have the private app with the neurologist - about £160 (was a few years ago). My GP also admits to not being knowledgable about the condition - but Dr Weishman was quick in writing to my GP to direct them with medication. Hope this is helpful - keep in touch and let me know what you decide.

Thank you PinkVic for your quick reply! The neurologists fee here is £340 so prices have gone up …still never mind I will make an appointment .I need the guidance with the medication and the tweaking etc and hopefully the neurologist will do that.My medications are 50mg pregabalin,10mg nortripyline and 0.50mg clonazepam .I am building up on the pregabalin as at this level it is way too small to help the pain.What mgs are you on with pregabalin and ampritripyline and do they help your pain levels? You are very thoughtful to answer my questions but it is so good to reach out to others in similar situations.Hugs!

Hi - I take 600 mg of pregabalin (in 3 separate doses) and 20mg of amtitripaline at night. I also take an anti-anxiety medication - which doesn’t help the pain, but stops me grinding my teeth - which doesn’t help the TN. The build up slowly for these medications is a must - my GP in desperation to help put me on full dose within a week - I couldn’t get out of bed! Also - don’t be frightened of going to your a and e department if it becomes too much… 1. They will give you drugs - and you can sleep if nothing else 2. If your at your wits end psychologically they can be a big help. One of my a and e doctors got to know me and we figured out what worked enough to calm me down!
What do you do for a living & have your work place been sympathetic. Walton gave me information that we are protected under the disability act as its neuralgia - helpful to know. Message me anytime - don’t suffer alone… It’s worse… Big hugs Victoria

Hi PinkVic…have sent you a friend request ! I shall then send you a message.x

Hi PinkVic,can you please let me know if you received a message from me yesterday…I sent one but not sure if it was sent…my iPad is playing up as is tablet …need an IT expert here! Thanks!