A few weeks ago, I was taken into hospital to have emergency surgery and when I came round and was able to take things in, the neurosurgeon who had been called (the operation was nothing to do with neurosurgery) told me that I had epilepsy and that he now had to advise the DVLA that I was unfit to drive. This came as a complete shock to me as I am 57 years old and have never been told that I have epilepsy before. However, when I had time to think about this, I remembered that I had been diagnosed with Tardive Diskenesia about 5 years ago and prescribed Lyrica, which I noticed was an AED, but thought no more about it. My current doctor has only just received a copy of my discharge notes from the hospital (I was meant to get a copy too, but it hasn't appeared yet) and it is impossible to get an appointment to see the doctor - the best they can offer is a telephone conversation in 3 weeks time. So a total of 8 weeks after I left hospital; I don't know what to think now and really don't appreciate the wait. In addition, the Neurologist at the hospital has so many appointments he isn't making any more for the foreseeable future and I just have to wait until they get into contact, maybe by new year? Any advice would be gratefully received. I don't even know what sort of epilepsy I have!
Diagnosed but mystified
- Thread starter miep
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I would certainly want better explanation than that.What sort what makes him think that what test you had and the time scale how long he think you had it.Many meds given for different things and also anti epileptic.Can you ask read results of previous medical results to be honest I be furious not be given more info.I think you got to be as blunt as surgeon I would use this time to think of as many questions as possible and make him dot I cross t.
To take driving lincensed away is right thing to do but I would insist he talk to you better in person ,how do he know it not your job.
Good luck and be assertive
To take driving lincensed away is right thing to do but I would insist he talk to you better in person ,how do he know it not your job.
Good luck and be assertive
KatymomtoA
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Welcome!
I understand how frustrated and shocked you must feel right now. Also, wanting to know answers in a condition with so many uncertainties. Be persisitant! You'll get them...but it does take time, and often more tests.
I understand how frustrated and shocked you must feel right now. Also, wanting to know answers in a condition with so many uncertainties. Be persisitant! You'll get them...but it does take time, and often more tests.
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miep,
Didn't you ask any questions when you were put on Lyrica? I was on Lyrica years ago but not for long I ended up with almost every side effect. I was taken off Lyrica I'dbe finding me another neuro and getting all my medical records to boot!
Didn't you ask any questions when you were put on Lyrica? I was on Lyrica years ago but not for long I ended up with almost every side effect. I was taken off Lyrica I'dbe finding me another neuro and getting all my medical records to boot!
What To Do?
miep,
If the hospital that you were treated in has taken so long to get this information about your release to your doctor, you definitely need to do something. If this is supposed to be a credible hospital, it NEVER should have taken this long. You need to contact that hospital and speak with someone in management. Tell that person or persons that unless they get your records to your doctor ASAP you are going to make sure that 'everybody is going to hear about how unorganized they are and your lawyer will be contacting them very soon'! It is amazing how much attention administrators will give you when they hear the word 'lawyer' in reference to their incompetence!
The other part about the doctor only giving you a phone conference may be something that can't be changed. Some specialists have a very long wait-time!
The doctor that talked to you in the hospital should be the one who has to explain the decision that was made and why it was made.
The way that this hospital has handled this is atrocious! They had better do something about this lack of attention to patients cases or find a new group of people to make up the administration of the hospital. It sure seems that they think that they can forget about a patients case, even if their actions are very necessary!
I know that if I had this kind of incompetence in a case of mine, I would make sure that I NEVER set a foot inside that hospital again!
ACsHuman
miep,
If the hospital that you were treated in has taken so long to get this information about your release to your doctor, you definitely need to do something. If this is supposed to be a credible hospital, it NEVER should have taken this long. You need to contact that hospital and speak with someone in management. Tell that person or persons that unless they get your records to your doctor ASAP you are going to make sure that 'everybody is going to hear about how unorganized they are and your lawyer will be contacting them very soon'! It is amazing how much attention administrators will give you when they hear the word 'lawyer' in reference to their incompetence!
The other part about the doctor only giving you a phone conference may be something that can't be changed. Some specialists have a very long wait-time!
The doctor that talked to you in the hospital should be the one who has to explain the decision that was made and why it was made.
The way that this hospital has handled this is atrocious! They had better do something about this lack of attention to patients cases or find a new group of people to make up the administration of the hospital. It sure seems that they think that they can forget about a patients case, even if their actions are very necessary!
I know that if I had this kind of incompetence in a case of mine, I would make sure that I NEVER set a foot inside that hospital again!
ACsHuman
Zolt
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Hey Miep,
I agree with the others above. I'll just add that at my hospital which is a HMO Kaiser, i can email my doc whatever questions i have and they would get back to me within a day. Sometimes within an hour.
As for tests, any and all tests i want copies!! I have MRIs now once a year and right afterwards i go to the records department and get a cd with the current MRI and previous ones on the same CD. I look at it before the doc does and i make my opinion on it. So far no signs of brain tumor returning. Woo hoo for me.
Also getting a second opinion or third may help.
Cheers,
Zolt
iano: op:
I agree with the others above. I'll just add that at my hospital which is a HMO Kaiser, i can email my doc whatever questions i have and they would get back to me within a day. Sometimes within an hour.
As for tests, any and all tests i want copies!! I have MRIs now once a year and right afterwards i go to the records department and get a cd with the current MRI and previous ones on the same CD. I look at it before the doc does and i make my opinion on it. So far no signs of brain tumor returning. Woo hoo for me.
Also getting a second opinion or third may help.
Cheers,
Zolt
iano: op:
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As everyone said be persistent and demand getting answers, paperwork and anything else that you need! There have been times that I've had to call my neuros office daily, sometimes several times a day, before I'd get an answer about things. I don't know if the messages weren't getting to him or what. I think they just get so sick of hearing from me that they'll finally take the message to my neuro.
I found out that I can also send my neuro an email, he's the one who told me about it actually. Depending on the nature of the message that I sent him I'll either get a return email or phone call within a day. The first time I emailed him I checked my email a few hours after I sent it and there was a reply! This has even happened with a phone call after an email too!
It shouldn't take as long as it is for you to be getting an appt to see him. Since you've just found out that you have epilepsy you should be getting into see the neuro very quickly. You are probably going to have to have some testing done and you need to make sure that that meds and dosages you are on are the ones that you should be taking. Sometimes the wrong med and dose can make things worse instead of better. This has happened with me several times and my neuro's had to change them.
Are there any other drs in your area that you could see?
Nice to meet you!
I found out that I can also send my neuro an email, he's the one who told me about it actually. Depending on the nature of the message that I sent him I'll either get a return email or phone call within a day. The first time I emailed him I checked my email a few hours after I sent it and there was a reply! This has even happened with a phone call after an email too!
It shouldn't take as long as it is for you to be getting an appt to see him. Since you've just found out that you have epilepsy you should be getting into see the neuro very quickly. You are probably going to have to have some testing done and you need to make sure that that meds and dosages you are on are the ones that you should be taking. Sometimes the wrong med and dose can make things worse instead of better. This has happened with me several times and my neuro's had to change them.
Are there any other drs in your area that you could see?
Nice to meet you!
miep, hi and welcome to the forum. I can imagine how frustrating it must feel to not get the answers you need to figure out what's going on and plan your future. I'm new to epilepsy, also, still in the testing and diagnostic stage and I've just lost my driver's license. I live in an isolated village in Canada and I often have difficulty getting to see specialists and trying to find out what's going on; I finally found the best way to obtain information is to make a Freedom of Information request at the records department of my local hospital. My specialist's all report back to my GP and I'm allowed to have a copy of that info. If I don't understand a specialist's report, I contact my family doctor to go over the information. I think, in the UK, you may be able to make an FOI request for your records. Good luck - Alanna