"15 years of my life wasted"
About: Royal Surrey County Hospital Royal Surrey County Hospital Guildford GU2 7XX
Posted by Fiona
Neurology I had been admitted to the royal Surrey via A&E 15 years ago with severe headaches and a squint (after 10 years begging for help with the headaches from the GP) at that time the wait in A&E was not too bad, I spent the night in A&E but was made comfortable, scans etc. were done which ruled out any abnormalities causing my symptoms, so a lumbar puncture was preformed where my pressure was found to be over 40mmH20 which should be 10-20mmH20 so this was brought down and the squint corrected its self over a few days, then another LP was done with a pressure back up to 32 and taken down. After this LP's were arranged every 6 weeks, the pressures were never normal for the next year, yet none of the medications available were offered to me and then suddenly I was "cured" and treatment was stopped... Except I still had severe headaches. For the next 14 years I was unable to generate a response from the neurologists and had essentially given up on having a life. Until last year I ended up in A&E again via the GP where I told them it was the intracranial pressure, it took 24+ hours for a new LP to be arranged, pressure was 32... Bringing it down to 18 stoped the headaches in their tracks (for 7 days) yet in the following weeks one neuro totally dismissed the original diagnosis and all evidence whilst being very rude and invented several other imaginary causes for the headaches (all now ruled out) and walked away leaving me crying violently on the bed with nurses trying to comfirt me and cancer patients saying how sorry they were i had been treated like that and they could not believe he was so rude. I was also left dehydrated twice while in the hospital, no one checks if you have had plenty to drink. Not one of 4 NHS neurologists I have seen in the last 12 months had read my notes or the letters I sent/gave them containing my medical history. I wrote to the original neuro I had seen the first time round begging for his help, he did not, i demanded a shunt, he refused giving no reason why not, but reluctantly offered to let me try one of the medications, which more than doubled the pain and created new symptoms, yet I was told to keep taking it... Long and short I had to ask the help of my parents landlord who paid and drove me to a Harley street neurologist this week who has agreed that the pressure seems to be the cause of the pain and has recommended a neurosurgeon and what I have been begging to try for 15 years... A shunt. Once i have seen the neurosurgeon and tried a surgical option, if it does work and I'm feeling better, I will be making a more formal complaint about the neurology dept. at this hospital. My biggest fear is that other vulnerable and sick patients are suffering at the hands of these men. It takes so little effort to read notes and listen to the patient, try it. Oh and it took 3 months and pals involvement to get my medical notes...funny looking 40 days.