Having been diagnosed with frontal lobe epilepsy 2 and a half years ago and with the suspicions of my neurologist that this has been if not a life long, certainly a long held, underlying condition, I have struggled with aspects of how this has affected aspects of my personality and development. I have worked through this but on several occassions have stressed to my neurologist (who, after initial diagnosis and seeing fairly regularly, is constricted by the vagaries of the nhs and sees me once every 6 months) and epilepsy nurse that I feel this process may have been made much easier with access to a neuropsychologist, as I have been led to believe is the case with places like the Quarriers centre in Glasgow. Since I have experienced first hand the postcode lottery of NHS services I am curious, have any of you had direct access to a neuropsychologist while working through epilepsy treatment with the nhs or are they as rare in every area?
Neuropsychologists anyone?: Having been... - Epilepsy Research UK
Hi, regret I can't help on this one. Am based in South Africa and we don't have many Neurologists available, let alone Neuropsychologists... It makes sense that this could affect personality and development of your system. All the best with finding out the information and keep us posted!
I did have at the western general hospital in edinburgh but he had no say in my treatment all he was doing was making sure i was fit and mentally able and ready for brain surgery which was a complete success in kirkcaldy i was seeing the neurologist every 6 months and saw the epilepsy specialist nurse once a year and dont think there is neuropsycologist i was referred to an epileptologist in edinburgh i was him and his team for a few years as it didnt matter what tablets i was taking it didnt make any difference as it turns out it was refractory (drug resistant) so last year i took a leap of faith and had neurosurgery it didnae half work its brilliant wasnt even sore just getting back to full fitness was the hard part as it does wipe the floor with you next time your at the neurologist ask for a second opinion and he or she might refer you to an epileptologist for further test and best treatment plan. Hope u get on ok
thanks jules! glad things went well for you...I got my diagnosis at the western (aren't they fantastic?:)) and was being treated at the victoria in kirkcaldy,actually moved to edinburgh to be nearer to the western, the victoria were proving so awful! I'm the same with refractory but my seizures are so dispersed from the frontal lobe they cant determine a focus for surgery, if we cant reduce the seizures (at my last video-telemetry session there were 56 recorded seizures in a 4 hour period with 7 of these being secondary generalised, and this was during what I thought was a quiet period!)to try and find one my options are fairly limited (vagus nerve stimulus seems to be the only other option suggested so far other than just putting up with it!); apparently the epileptoligists work with one neuropsychologist at the western, I've seen the former but only the door to the office of the latter! I asked a junior doctor (you know the ones, doing all the leg work for the neurologists!:)), just out of curiousity, what required a referral to the neuropsychologist and all he could say was they only referred in very rare cases and actually used the good old phrase, getting an appointment was like hen's teeth! I have a friend who had a motorbike accident and through head trauma developed occipital lobe epilepsy. His family paid for a six stay at the specialist epilepsy Quarriers centre in Glasgow, he literally had a team on hand at all times which included a neuropschologist! As much as I am a fan of the Western it was like night and day in comparison, if only there were unlimited funding for the NHS!
Looks like your stuck between a rock n a hard place thats pretty sht aye the vic are hopless i only got referred coz the neurologist there hasnt a clue keep on trying tho video telemetry has got to show where exactly it is coming from thats how i got my op its been a blast good luck big cuddle coz i no how u feel chin up :-)x
Ah jules, just come out of a week n half of clustered seizures n appreciate the cuddle from someone who understands, even if it is virtual! Thank ya kindly ma'am! I have a feelin we may have had association with the same neurologist at the vic but don't want to name names for fear of lawsuits but my experience was something similar and led to me actually movin house to be in a Lothian catchment for the western after being discharged at a weekend from the vic, having been admitted in status on the Friday eve, told to keep me in til the neuro could see me on the mon, then discharged by the attending doc in admittting on the Sunday morn who said 'your epilepsy is too complex for us to deal with', and I actually overheard saying 'if we discharge him and refer him to the western, we won't have to pay for the transfer'! It was the final straw after a whole heap of other c@&k ups and although my seizures are still proving refractory and dispersed at least I trust the care I'm getting!
I'm curious, how long ago was your surgery? How's the recovery now? No seizures at all? How bad were you before? (If these are too intrusive I totally understand and apologise; I'm still holding out a thin hope they can reduce the dispersal of mine and find a focus for operation!)
Thank you, very much appreciated!
Well hello massive cuddles comin your way x my surgery was 12th december last year and it floored me it really did i was warned it would but after 4 months i started feeling maself and within 5 months i was back at work and loving life to the max i have been seizure free ever since its brilliant i have even started body building lol i love my new life my seizures were refactory and happening up to 10 times a day as they were abscence seizures u wouldnt be able to tell close family n friends could tell but no one else if there is away for you to get an op done i wld take it and go for it its totally worth it the man at the vic his last name begins with a z and ends in r if this is who u think let me no x
Bless yer lil heart wi all the cuddles jules! honestly, your story is the most heartening news I've heard since my diagnosis, seriously! I've looked at all my options over and over but to hear a 'success' story from right on my own front doorstep, keeps that wee bit hope burnin for when times are most despairing, thank you!
I just knew it with the neurologist! I'm in the process of my lawyers following up negligence claims against him and the vic and didn't want to even chance a veiled reference but you nailed it ma'am! Jeez, a cuppa n a bitch about the funny lil fella wouldn't go amiss! Lol. I've got the virtual kettle on as we speak! :)x
Hiya how you doing r u ok cuppa did u say aye awrite lol 1 sugar n semi skimmed milk plz ta x hope you have been doing awrite i on the other hand am just fab the weights are heavy 100lbs lifted nae sweat well maybe jst abit awrite a big bit lol have you gotten any further forward with gettin a permanent solution to your seizures
Hey Jules, howdo? Had to go and pick the virtual tea leaves for that tea, that's why it took so long!lol here ya go though, just how ya like it, wee virtual biscuit on the side too, I'll understand if you skip that with all the fitness training you've been doin though, well done you! not been too great with the seizure clusters too be honest but with the help of the epileptologist etc at the western general working my way through it. Because my seizures are frontal lobe and come in dispersed clusters the issue is trying to find a focus for any kind of surgery now that we've exhausted all medicinal options and can acknowledge I'm refractory. I'm getting a mobile telemetry unit home over next cupla months, see if that helps pinning it down but, as with a lot of frontal lobe sufferers, it might be that the main focus is too deep to operate. Been talked through vagus nerve stimulus options too so feeling like there are at least other options than just living with! (I have quite a few seizures overnight most nights clustering into a secondary generalised/tonic clonic seizure at least 1ce). Due to see the neurologist early February so hoping we have as much data as poss by then to make some decisions! Fingers and toes crossed!
Other than that, hope you and yours are due to have a lovely festive season and I'd like to extend Yuletide greetings to all and everyone who might be reading this on here, and apologise too for my incessant blethers; have a cool Yule everyone and better health in 2015!!!
Thanks Nicola, getting quite a picture of how much things differ from nhs trust to nhs trust and from hospital to hospital, interesting stuff, thanks again for your input, enjoy the festive season!
I saw my neurosurgeon on 10th December and I get to see a neuropshycologist on 5th Jan. I hadn't realised untill I saw your thread how lucky I am to have such ready access to one in my NHS Trust area. I also get a first speach therapy session later in January.
This is all in prep for possible biopsy and potentially radiotherapy depending on biopsy report for an in-operable tumour. It's a low grade diffuse tumour and in an important part of the temporal lobe, hence the Epilepsy and speech problems amongst others.
I do so hope you can be referred soon to help with your issues.
In the mean time have a brilliant Christmas and a much better new year.
Thank you sporan, hope you had a great xmas and all goes well in the new year! It wasn't until discovering my condition I found out what a postcode lottery the nhs can be, had to move house to an area covered by a different trust to get anything like the consistency of care my condition needed! Still refractory, still struggle with the clusters but trust I'm in the right hands!