Hi

[davidmc]

I'm david, 29 from the UK.

For 13 years I have been getting what a few doctors think are partial seizures and have been going to the doctors for 12 years about them, and eventually after years of promising they would, they finally gave me an appointment for an EEG today. But when I phoned up the hospital, they said I didn't have any appointments today (I know 100% certain I did just lost the letter though so wasn't sure on time), they put the phone down on me 3 times even though I was nothing but polite.

I went to the hospital to see what is happening, and got the awful receptionist who had put the phone down on me, she sais "You phoned earlier, you don't have an appointment today". I know for certain i did and said so, so she got a colleague to check the computers, still nothing, so they told me to go to EEG Physiology as it may be on their computers. So I did, but it wasn't on the computers. I explained how long I had been waiting for this test and I definitely had a letter saying I had an EEG today, but lost it.
They were much politer and more helpful than the rude receptionist downstairs and agreed to let me have an EEG test.

The EEG was for 20 minutes, but they ended up doing it for 30 minutes and at one point said "I need to check something" and put more wires on my head. Does that mean they found something?

Also, can I request a copy of the actual recording, as or other tests, I've just got leters saying "Results were normal", and even if they do say this test was normal, I want to make sure, cos I had an MRI scan recently and the Neuroscientist said there was no abnormility other than sinus disease.
But it turned out that she had just missed everything (she was very lazy and unprofessional like most of the doctors I've seen), and the ENT specialist looked at my scans and found that I had opaque frontal sinus, a mucocele in the frontal sinus (a mucous filled cyst I think), and problems with mucosal drainage, and scar tissue from an op I had 19 years ago 9which was to remove a lump, which was either CNS [Central nervous System] heterotopia or part of a residual encephaalocele), so I want to be sure.

 

[epileric]

Welcome David

It sounds like you've been having problems similar with the medical community that I have grown to expect. Usually mine are with the neurologists themselves though (doctors & technicians are usually pretty good).

Recently I've been pretty lucky in that the neurologists I've gotten have been pretty good.

Meanwhile congratulations on finally getting your EEG done.

 

[travel bug]

Hi David:hello:

Welcome to CWE; I hope you find it as helpful as I have. There are lots of nice, supportive, knowledgeable people here.

Sorry you've gotten the runaround from the medical system. I've rarely faced rudeness like you have, but it's amazing how often things seem to fall through the cracks and the ball gets dropped between different offices that are supposed to be working together.

I don't know about in the UK, but here in the US I've been able to get a copy of the recording of an EEG (it might have just been the section showing the irregularity) as well as a detailed report.

I also have (or had) a mucosal cyst. It was there in the very first MRI I had about four years ago; it was there on every MRI since (I have a brain tumor so I've had a lotof MRI's since then)and seemed to be growing. No doctor has ever addressed it though one radiologist's report called it worrying. I like and respect my neurosurgeons, but when I've tried to bring it up, they act like I've asked them to scrape my bunions Anyway, after I started chemotherapy, the cyst started to shrink which is good, but kind of worries me. I also had to take a drug to boost my white cell count during chemo, so maybe it was the extra white blood cells that did the job. But my last MRI a couple of weeks ago showed almost no cyst left. Sorry about rattling on about it, but I've never heard of anyone else having one and there's not much information about them out there.

Hope you get some useful results from your EEg and that the neuros can figure out the best way to help you control your seizures.

All the best

 

[davidmc]

Thanks for the replies.

I couldn't find much info on mucosal cysts, nobody on medical forums had had one.
Can they cause thyroid type symptoms without showing abnormal cortisol results? Could the scar tissue from the op from 19 years ago cause partial seizures and blackouts? Although i will ask them and hope they let me have more thyroid tests as I haven't had any for a while, and if they can miss a cyst and say my scan was normal apart from sinus disease, who knows what else they have missed? Thanks to the shoddy service I've recieved by the vast majority of specialists at Hope Hospital, I feel like I need to get a second opinion on all my results.

 

[Endless]

Hi, David,

Welcome to CWE!

So sorry the hospital and your doctors are treating you this way. I think dealing with the medical system is almost as exhausting and difficult as our seizures. During the diagnosis process I felt like I was running a marathon, and eventually I hit the wall.

I've had cysts and polyps in my sinuses. They were removed during surgery, and have returned. I don't think those cause seizures, but you never know. Cysts and Polyps are kind of considered no big deal, so maybe that's why they didn't mention it to you, and just put it in the bucket of "sinus disease." If it is causing repeated sinus infections or you can't breathe, you may want to have it fixed. The ENT (Ear Nose Throat) doctor would probably recommend sugery. Repeated infections are definitely not good. They are a seizure trigger for me. Are they for you? What did your ENT say about what to do?

EEGs..... I've read several articles saying how difficult it is to read EEGs properly. I'm convinced that if a case is at all complex than an epi (seizure specialist) is about the only one who can sort it all out properly. Is it possible to take your eeg to an epi to be read?

Usually a software program detects abnormalities in the EEG, then a doc looks at the part the software points out and confirms it is abnormal brain waves. Many times the software flags something that isn't a seizure. At some hospitals the doc also gives the whole thing a once-over, to make sure the software didn't miss anything. If your EEG was incorrect, that means both the software and the doctor were wrong.

About 40% of all of the cases of Epilepsy are diagnosed on case history alone, with no EEG results. Seizures may not show up on the EEG because either they aren't happening at the time, or they are happening too deep in the brain to be picked up by the electrodes. So just because your EEG was negative doesn't mean you aren't having seizures.

Did I read right that you had surgery? On what part of the body? I was reading up on Gluneronal Heterotopias and encephaalocele. It can have stuff pop up in lots of places.
http://eurekamag.com/keyphrase/g/096/glioneuronal-heterotopias.php

Are you having simple or complex partial seizures? (simple=no loss of consciousness or memory, complex=loss of consciuosness or altered memory) If you describe your seizures we could take a stab at identifying where in the brain they might be coming from. We're not doctors so our opinion is just an opinion, but between all of us we've pretty much heard about everything in here.

 

[davidmc]

The op was on my scalp to remove a haemangioma which was either CNS Heterotopia or part of a residual encephalocele.

Not sure if they are seizures but over 4 different specialists thought they might be. what happens when I get them is my arms move uncontrollably, and often my legs too, and my eyes often close but I am always aware of them. But the past few months I've been getting blackouts.

Some of my other symptoms are:

headaches (don't know if it's related to the mucocele, but it's in the right place to cause them I believe)
memory loss/forgetfullness (often I will forget what I am saying mid sentence!)
excessive sweating
excessive thirst
often feeling hot even when the weather is cold (had diabetes tests
Pain in the area where my lump was removed, which only came on in the last year or so despite the op being 19 years ag, apparently this is normal!!! How on earth can it be so long after the op?

One ENT specialist said it may need removing with an op, but the other has made no mention of removing it, but I do get headaches.

 

[davidmc]

As per usual with this hospital, they haven't bothered to send the results of the EEG test out despite promising twice already to. They said they will send them out, they've got a baclklog.

Anyway, in the middle of last month, they arranged for me to see an epilepsy specialist on the 9th February, so hopefully I'll get something done then, but at this rate I won't have my results for the EEG before I go to the epilepsy clinic.

 

[Chel]

Can they send the EEG results direct to the epilepsy clinic? Seems a bit silly to double-handle them...

 

[davidmc]

Can they send the EEG results direct to the epilepsy clinic? Seems a bit silly to double-handle them...

They've not even typed them up to be sent, only the Neurologist has them, and whilst being nice to my face, he sent a very patronising letter to my doctor (without realising I get copies of all letters sent) which focuses on the fact that I went to special school (with the years wrong). So I don't know what's happening now.