VEEGT monitoring?

[junky]

*badmood

Saw the Neuro. earlier & now wants me to waste my time @ an Intensive sz & monitoring which would mean a VEEG. The hospital I would have to use, they expect someone to remain, (basically spending the day in the hospital) to baby sit me in case I flop. That's what the damn purpose of the VEEG. To see what happens. The last one I had done I didn't need, nor wanted a babysitter. Not only that, but no one can be reliable since it's hours away & they have kids & work.

Do these hospitals just decide if there's no one available to waste their time then I will be tossed on the end of the list until a babysitter is hunted down?

[Tattoo2]

Is this doc a general neurologist or an Epileptologist? They are not the same. You want an Epileptologist!!!!!!
Usually it is EPIs who order the VEEG. I cannot see a genera neuro ordering one at all. I would have reservations for sure too. What you want in a facility with an Epilepsy Monitoring Unit (EMU) is one that has telemetry set up in each room so that the EEG techs sitting at the desk can see what you are doing an also see your EEG at the same time just like they do on Cardiac floors. That is the best and safest EMU. Not all of them have that set up ad require someone to sit with you to tell the staff if you are having a seizure if you are not able to tell them so that person will NEED to recognize all types of your seizure activity. That is hard to find. Nurses will not know this either. EEG techs might. My family would have no idea. I had VEEG in a place like this and it was not safe for me. Staff cannot see what is going on unless in the room. That is dangerous!!!! Is this doc an Epi? If not, ask PCP to refer you to a Comprehensive Epilepsy Center that had Epileptologists not just neurologists who like epilepsy but didn't do the Fellowship to get the training in it. Then check on the EMU. I had another in an EMU that did that the telemetry after the first one, and it was like night and day. Tattoo

[Porkette]

Hi junky,

I agree with tattoo when I had my veeg it was the type where they did surgery and put the electrodes directly on my brain and I never had anyone watching over me. What my Dr. did is had pads put on both sides of the rails on the hospital bed so
I wouldn't toss around and hurt myself when I was having a sz. I would find an EPi like tattoo mentioned and be sure you go to a Epilepsy Center. I wish you the best of luck and May God Bless You!

Sue

[Michelle83]

I've never seen an Epileptologist, but have had a great neuro. the past 17 yrs., at a Comprehensive Epilepsy Center. She's the one who talked to me about surgery, and got me scheduled for all the testing, in the Epilepsy Monitoring Unit. It wasn't necessary for me to have someone there to watch me. It was all kept on video, and I was in one of the rooms across from the nurses station. She's done many research studies on epilepsy, and would be the head of the floor when I was in for VEEG testing.

When I had the Ictal SPECT, I'd be hooked up to the VEEG. A specially trained nurse would be there to inject me with a radioactive tracer, as soon as a seizure started. Then I'd be transported to Nuclear medicine for a specialized scan, to get a picture of the cerebral blood flow. Another scan would be done later without a seizure, so the blood flow could be compared to what it was like when I was having a seizure.

[Tattoo2]

They are all kept on video. They are looked at to note any physical activity etc that occurs during a seizure. They also have the EEG tracings too to compare with the video. The important point is that the one they are videoing is a human being and not lab rat. While the human is seizing and no one has their eyes on them, they could die. Respirations can fail. They can vomit and aspirate. They could flail themselves out of bed or just seize a very long time causing further brain damage if allowed to continue. That is my experience in an EMU with no monitors and with no one watching but a camera. They end up with a great video that the students will no doubt learn a lot from, but what happened to the human? We are not there for the students to learn from. They are there to care for us and learn in the process. If your doc is not an Epileptologist and has done all you mentioned without the education of that higher level, I am not surprised by the lack of monitors in the EMU. I was allowed to seize for at lest 8 hours continuously at Emory EMU because no one was watching, and the staff did not recognize complex partial status. Wonderful! I did have camera on me though. Made a great visual aid for the med students. I lost a lot of memory as a result. Good luck. Check your docs bio. She ma be an Epileptologist. Tattoo

[junky]

Thanks!

It is my somewhat new basic neuro. who expects me to go & have what ever testing they will do @ an Ep. Clinic for monitoring. It didn't surprise me that he came up w/ that idea, but it pissed me off more after I left & later realized that he failed to have the blood levels done, since I had changed to the generic crap & I had informed him I had a SZ the day before I saw him.

I thought I had a bad memory.....

[Michelle83]

Is this doc a general neurologist or an Epileptologist? They are not the same. You want an Epileptologist!!!!!!
Usually it is EPIs who order the VEEG. I cannot see a genera neuro ordering one at all. I would have reservations for sure too. What you want in a facility with an Epilepsy Monitoring Unit (EMU) is one that has telemetry set up in each room so that the EEG techs sitting at the desk can see what you are doing an also see your EEG at the same time just like they do on Cardiac floors. That is the best and safest EMU. Not all of them have that set up ad require someone to sit with you to tell the staff if you are having a seizure if you are not able to tell them so that person will NEED to recognize all types of your seizure activity. That is hard to find. Nurses will not know this either. EEG techs might. My family would have no idea. I had VEEG in a place like this and it was not safe for me. Staff cannot see what is going on unless in the room. That is dangerous!!!! Is this doc an Epi? If not, ask PCP to refer you to a Comprehensive Epilepsy Center that had Epileptologists not just neurologists who like epilepsy but didn't do the Fellowship to get the training in it. Then check on the EMU. I had another in an EMU that did that the telemetry after the first one, and it was like night and day. Tattoo

There were also monitors, and EEG tracings, sorry I didn't type that. My neuros.' specialties include... Clinical Interests of cognitive function in epilepsy, sleep and epilepsy, general neurology. Research interests of cognitive function in temporal lobe epilepsy, Wada testing, epilepsy and sleep apnea. She has additional titles, one including the EEG/Epilepsy Program. She's a professor as well. When I asked if she was an epileptologist, she said, "No, but we do have some here, which I could refer you too if you'd like" . I told her I didn't want to find another doctor... just asked out of curiosity.

[Tattoo2]

Where are you? There are some good Comprehensive Epilepsy Centers out there. This site helps you find them and to determine which ones offer the level and type of services this group feels meets their criteria. This is a very good site. Ask your PCP for a referral to a Comprehensive Center that has patient care higher on their list of services than Research is. Makes a big difference. Only registered and activated users can see links., Click Here To Register... See if where your doc referred you to is here. If you do go to one your doc will be the one there. They can refer you back when they have done what they can do. I spent waaay rtoo much time with general neuros! Affected quality of my life and what I was able to be with the only time I have here! tattoo.

Only registered and activated users can see links., Click Here To Register...

[Michelle83]

If I'm treated well, and everything is done up to my expectations, I don't believe it's necessary to find a new dr. I had gone years seizure free, and when the seizures returned, I was no longer able to be controlled w/AED's. Tried different combos for 15 yrs., and didn't get much help. I had mesial temporal sclerosis, close to the speech/lang/memory, in my left temporal lobe. A bad reaction to the small pox vaccination, caused encephalitis, seizures, and the scar tissue. I had a bad reaction to the DTP, as well.

I had a left temporal lobe resection, and removal of the left hippocampus, back in 12/02. It wasn't a total success, and I don't believe seeing an epi., would've made it more successful. Since then seizures are less severe, my memory is back in order shortly after, and I have long seizure free intervals. Going from 7 seizures/mo. to 1 every 12 or 18 mos., has been very helpful. Only thing that's caused me trouble since then, was the changes Pfizer made to dilantin. My level almost doubled, after the changes were made. This caused me to have a few seizures, troubles with balance and memory. Lowering it 50 mgs., got everything back in order.

[howdydave]

Howdy Michelle!

Hmmm...

Looking at your doc's areas of specialization; is this for your benefit or does he just want some more data for his own personal research? If it is data collection for his research, you should get paid for it.

Have there been any drastic changes in your medical history (such as change in seizure types, seizure frequency or head trauma) since your last VEEG?
If not, why take another one?

Let's see if I got this right:
You went from 7 seizures/mo. to 1 every 12 or 18 mos. and your doctor wants another VEEG?

WHY?

I would demand justification for the proposed testing.

As a patient, you have a right to say no to testing, especially unnecessary testing.

There were also monitors, and EEG tracings, sorry I didn't type that. My neuros.' specialties include... Clinical Interests of cognitive function in epilepsy, sleep and epilepsy, general neurology. Research interests of cognitive function in temporal lobe epilepsy, Wada testing, epilepsy and sleep apnea. She has additional titles, one including the EEG/Epilepsy Program. She's a professor as well. When I asked if she was an epileptologist, she said, "No, but we do have some here, which I could refer you too if you'd like" . I told her I didn't want to find another doctor... just asked out of curiosity.

[Michelle83]

Hi Dave,

I haven't needed a VEEG since '02, before surgery, and don't have any scheduled. I replied to this thread, to tell about the testing I've been through. I've had my neuro's. page bookmarked for over 9 yrs. now, that's where I got the info.

When I saw my neuro. last month, I begged to lower keppra. She said she didn't think it would be best, but I could lower it 500 mgs., and give it a try. I woke up last Monday, seeing my pillow on the floor, so I know I had a nocturnal. It didn't cause any after affects. Been having simple partials almost every day since then, which have caused some trouble with my memory. She was right that lowering it wouldn't be best, so I decided to add the 500 mgs. back today.

[Tattoo2]

AEDs after surgery

How much Keppra are you taking? I had successful surgery in 1998 and was on 2,000 mg Keppra throughout those years. I also would have a rare aura. In late 2010 my doc suggested lowering my Keppra. I did it very gradually. I don't know fast you did it, but fast is not good! I did it by increments of 250 mg and stayed on each decrease for a week at least. I am now taking 1,000mg a day and the rare auras have stooped too. In times of stress I might consider adding 250 mg but not until I think that it would be better than now. To much med can cause seizures! A general neuro may not know that and not care! DO NOT assume he/she does. Their goal is to keep to meds going. That's is all that is in their tool box. If you needed less meds, you may need less appts, and they make less money! Same reason they do not refer us to Comprehensive Centers sooner if at all. That's reality. Tattoo

[Michelle83]

I've been taking AED's for a long time. I tried 5 other drugs before keppra, and know how to lower a dose correctly. I've been seizure free, and feeling fine, since I got my dose back to where it was.

Did you have a temporal lobectomy or resection? I had to have a resection, to remove scar tissue and the left hippocampus, My focal point was on my dominant side, close to the speech/lang/memory area. I wasn't put on the list of surgery candidates until my results on the Wada. The conclusion after all the testing was, that I most likely wouldn't be totally seizure free after. Even though I was told that, I wasn't afraid to give it a try. I'm glad your surgery was successful.

Four years after surgery, since I'd been doing well, there was no longer a need to see my neuro. 2x/yr., at the Comprehensive Epilepsy Center. The past 5 yrs., I've seen her every 12 mos., and get the levels checked when I see her. If in between the appts., I have a feeling a level may be high, I can get it checked at the local hospital, then faxed to her.

Some are lucky to get their doses lowered a lot more after surgery, or get totally off meds. Then there are some who aren't as lucky. My neuro. cares about her patients, and is not one to keep patients on a higher dose, if it's not necessary. There are epi's at that hospital, but I don't believe it's necessary to switch drs. Since there's been new meds. on the market the past few yrs., an epi may want me to try something else. No reason to start playing with other meds., when I've been doing well on what I'm taking.