I thought it would be interesting to compare notes as to how we feel the NHS is 'treating' us.
I was diagnosed last July and am very lucky to have a very supportive GP. He's not my official GP but is the doctor in the group practice who first diagnosed me and I've managed to 'adopt' him as my TN doctor. :-)
He referred me to a neurosurgeon in Taunton (Somerset) who gave me all the time I needed with him and he was willing to discuss all the questions that I had. He referred me on for a MRI which showed a compressed nerve. So now I have an appointment with the neurosurgeon Nik Patel at Frenchay in Bristol on 3rd August. The process has been a little slow but I've also been trying various meds at the same time to see if one can be found that will manage the pain well. I've not found one yet.
So far I would say I am OK with the way I have been treated.
I live in Leeds and originally they believed that the pain was caused by a tumor in my ear. I was sent to an ENT specialist who referred me for an MRI and also did an Nasal edoscopy to rule out anything in there.
I have also adopted a doctor at my surgery who is looking after me for my ATN prognosis. The day after he adjusted my dosages of drugs I had to go to an emergency doctor after having pain like I have never experienced before. This Doctor prescribed me more things to help, but was also a radiologist part time and has recommended i get a second opinion on my TN area as that would have been overlooked the first time.
So far i would give the NHS 6/10 as the speed of referrals would be better if it was a bit qicker - i've been estimated 6-8 weeks for a refferal to the Pain management people.
Since being diagnosed over eight years ago, the support I've received from my GP has been outstanding. The diagnosis was made at my first appointment which always helps. I was referred to a neurologist prior to which I had a MRI scan. Over the next seven years or so, my TN was manageable with meds, Tegretol. However, in November last year the pain increased to the point I required two hospital admissions.
The paramedics and A&E at Crosshouse Hospital hadn't a clue and my treatment was nothing short of appalling on both occasions, especially the second time. When I was eventually admitted, it was to the infectious diseases ward, probably the only bed available, where, to cut a log story boring, my treatment was superb. I'm now on industrial strength doses of medication and waiting for an MVD which I believe is imminent.
Other than my experience at the hands of the paramedics who were unwilling to listen to family members and A&E where there was a breathtaking ignorance of trigeminal neuralgia, I have no gripe with the NHS.
If anyone’s interested, a fuller account can be found on my blog at the link below.
I have was diagnosed just over two years ago my Dr is brilliant,,, but went to se a neurolagist and he wasnt at all helpfull tryed to make me feel like i was making up the pain,, he didnt offer me an MRI scan but my auntie can with me to the appoinmemt and insisted i have one ,, the neurolagist didnt make a follow up appoinment I had to go to my GP for the results and he hadnt written much just that i didnt have a tumer. I then went to the pain clinic which was a 4 month wait was given some three types of drugs to take and sent on my way. I didnt hear back from them either so carried on seeing my own DR ,, and finaly this month I have made an appointment to see a neurosurgen and am waiting to here .. so have knid of decided i Will have the MVD ... so NHS some good osme bad and I havent found a drug to stop the pain either,, i take cocodomal as they seem to relax me at the time off an attack
I am now 9 days post op after having an MVD. I was formally diagnosed by my GP in Nov 2011 and put on tegretol & then pregabalin. Pain was eased but TN never went away. I am a qualified Nurse and have a good idea about the NHS systems even though I work in the private sector. I begged my GP to refer me to a Neurosurgeon in Feb this year after a particularly bad episode and paid to see a Neurosurgeon who I knew had a good reputation in our area but there were no NHS appointments available to see him for months cos GP's have to use the choose and book system so you dont know which Neurosurgeon you are going to get. I saw neurosurgeon privately in early march and he told me to get my GP to send him a letter of referral via NHS & I had a MRI scan about 2 weeks later. At my follow up appointment about 4 weeks later he showed me the scan & explained that Trigeminal Nerve was being compressed and was kinked. With no further messing about I agreed to the surgery & went in Hospital for the MVD op on May 15th. Best decision I have ever made. Am getting better & better each day. I do not have private medical insurance but the £200 I spent on that private referral out of my own earnings helped to avoid all lengthy delays with appointments on the NHS which can be like wading through treacle. Best wishes to you all
Hi , I toward going to payeto see a neurosurgeon in andenbrooks but was offered a NHS opppiontment a week later , I the saw him had my scan he saw a vessels compressing the nerve but it was in a differant place to where it normally is, so as I haven’t seen a neurologist he wants me to see oneto get a second option and to make sure it’s TN which I know it is and I to have meds but am still getting pain , it know been 4 weeks waiting for the appointment rand the neurosurgeons sec she was off for a week and a half when I finally got through to her the letter to nurologist had net been sent I so I asked for his name and I’m going to ring him Monday to see if I can speed thing up if not illpay to see him, I teach GCSE students and need this done before or in the summer holidays , so I’m still waiting , by the way OH Nurse where did u have your op and who done it thank you
I was first referred Musgrove in Taunton within weeks of my first pains because of my age, have had my TN managed by GP since my MRI in 2009 and my new GP in Taunton is amazing and after 2 weeks of mess not working he has referred me to Bristol, just waiting on an appointment now, but in general the nhs have been nothing short of brilliant, here’s hoping it continues xxxx
A doctor at A&E diagnosed the TN for me, but he spent no time explaining it to me, just gave me a prescription and told me to look it up on the internet. Big Mistake as what I read frightened me so much. Went to my GP on the Monday who calmed me down by discussing the condition with me and reassured me that she had many patients who could manage it, I was terrified that I would want to commit suicide in a few years as that is what I kept reading. GP wanted to manage it herself but I insisted on being referred to a Neuro who was very nice and he has said I can return if I need to in the future.
Not at all. I am suffering since Feb 2012 and still not free fr pain. My DR is so reluctant to refer me to neurosurgeon for some reason. cannot understand why and do not know what to do.
You really need to force the issue with your GP. He/she is not a specialist and will not have the necessary expertise or experience to give you the best possible treatment. If a referral is still refused, demand to know the reason / rationale behind the decision and then go to another GP.
Thank you for your reply. I have an appointment with her on next Friday. It is very difficult to go to another GP. I will t to ask her to refer me to neurologist.
Don't ask, demand, that's your right. TN does not go away on it's own as far as I'm aware. If it does disappear you can be sure it will come back (I'm speaking from my own experience here). There is a breathtaking ignorance out there among health professionals and by coming to this site, you will become more knowledgeable on a practical level than GPs ever will. I was lucky that my GP was clued up and I got the necessary treatment, referrals, medication etc over the 8 years leading up to my MVD. I'll drop you an email at some point in the near future.
Keep your chin up, believe me, I know how difficult that can be.
I was diagnosed 13 yrs ago at the age of 33 & over the intervening yrs attended the same neurologist, who was genuinely lovely & very helpful, but he recently retired. I had a 6 yr long period of dormancy, but when if came back in 2011, it came back very hard & full on. I was referred back to my old consultant but got his replacement. He seemed nice at first, fiddled about with my drugs a bit & left me to it. He prescrined Phenytoin, but I took a major reaction to it & had to come off it again.
Over the weeks running up to Christmas, my TGN went on hyper-drive & I got an infection in my jaw, it was unbearable! The pain drove me to the edge of reason & I will admit that did get to the "stop the world, I wanna get off stage" on a couple of occasions, during which I sought help from my GP, my neurologist, the out-of-hours doctors & dentists, my own dentist, as well as the A&E Dept.at Antrim Area. The only one to actually seemed to understand the pain I was in was the A&E dr in Antrim Area. She told me that they were way outta their depth with the severity of my TGN but she gave me some morphine & allowed me to go home as the light & noise in the hospital were bothering me.
As for my own GP & my neurologist from the RVH, my husband & I pleaded with them by phone on several occasions, for help as I was delerious with the pain & had actually torn the skin off my face with the severity of it...they were...absolutely useless!!!
Their reply..."so sorry she's in so much pain, we'll have to wait to see what the MRI shows". They din't even tell us how long we were gonna have to wait for said MRI or even that they would try to speed matters along! I've already been waiting for 5 weeks for my MRI!
Cannot fault AntrimArea Hospital...but my GP & the "specialists at the Royal Victoria in Belfast??...Shame on you!!
I didnt get to see my GP but another one at the practise and he stated it was TN after ruling out everything else with bloods and antibiotics. He had me on carberizpine but that didnt help so refered me to maxfax. That was a fast tracked appointment which took 9 wks. They have xrayed and Mri me but can find no reason for my facial numbness or pain so they have closed my file and sent me back to my GP. So now I have another week of no pain relief as GP wouldnt give me anything till maxfax had carried out their review and he is on holiday till next friday. I could cry at the moment. My GP has been great but how one dept cant refer to another in the same floor in the same hospitsl I do not know. I knowI sound moany today but overall service from nhs has been fine. Im off to research alternative therapies now as the hospital suggested gabapentine? But I cant speak to the GP for that for another week. First port of call is an acupuncturist. Nothing is straight forward with facial pain is it :-)