ADVERTISEMENT

Feedback for veeg, seizure monitoring!! Please share your experience!!!

Hello,

I am a patient volunteering at my hospital on a team striving to
improve the safety in the seizure monitoring unit.  Our work is
published at the AES annual meeting.  The information gathered helps
hospitals all over the world make the VEEG monitoring unit a safer,
more informational experience for everyone involved! Please share with
me your experience in the hospital, and the things you would have liked
to see done differently, or the things you would have like more
information about.

 Thank you for your time

Comments

Re: Feedback for veeg, seizure monitoring!! Please share your ex

Hey Mama-Mia.

Ive done the Video EEG study twice now, and frankly, I hate it.
It was less bad the second time, but having to remain in bed for five days or so is terrible.

Crucial elements in making patients feel better about the procedure would probably be: wireless internet, TV's in the room with video ports to allow for game consoles and/or dvd players etc.

the entire thing is boring as all hell, not to mention depressing and humiliating. (at least for me)

One of the few saving graces was the nurses and medical staff. They were ridiculously kind and caring.

waiting for a seizure to get the ictal SPECT was pretty crappy. the first visit I stayed for 6 days, had no seizures. go figure.
Second visit, I was there for 3 or so, had a seizure the first time the radiologist with the technetium contrast were there.

Thats about the extent of my experiences and opinions, as far as I can remember.

Re: Feedback for veeg, seizure monitoring!! Please share your ex

Hey,

 

I'm currently in the seizure monitoring unit in boston at Massachusetts General Hospital. I came here yesterday and they told me I'd probably be here for about 3-5 days depending on how things go. As you can see we have wireless internet available, cell phone usage and TV's in rooms. I agree that the leads on your head, the way they wrap your head and the glue are all negatives...but I guess the only thing that bothers me the most is the head wrapping...my whole head is wrapped in white gauze..I feel like a big Qtip...lol. 

The other thing I wish is that I could at least get some exercise..even if its like twice a day doing a couple laps around the unit...I just feel so cooped up in here. When I've had seizures at home I'm doing normal activities etc...so my hopes are that I'll have some sort or seizure while i"m here...they have started reducing my meds but not enough to cause me to seize...at least I dont feel that way. They are making me stay awake till 3am each day and waking me up by about 7am...but its so hard to sleep here anyways that by 3am I've gotten my second/third wind and I'm past the point of being tired..its frustrating to say the least. 

I'll report back and let you know how I make out. 

Re: Feedback for veeg, seizure monitoring!! Please share your ex

I hope everything has worked out for you!  I felt the same way about my meds being decreased.  Like they were doing it too slowly, when all I wanted to do was get it over with so I could go home.  I am pushing internet availibllity right now and the more people that write in about it the better, so thank you!!  :)  Please let me know how it turned out for you!!

 

Happy new year

Re: Feedback for veeg, seizure monitoring!!

Well, the VEEG wasn't my dream vacation, but it was tolerable.  lol Let's start with the Not So Pleasant category.  The hospital staff made sure I had my meds (other than AEDs) but they gave them to me at odd times.  For instance, I have a thyroid med that I have to take in the morning 1 hr before breakfast in the morning or the med doesn't work right.  I had to remind them of this 3/5 days I was there.  Also, I had the sleep deprivation plan because this is one of my triggers.  The nursing staff couldn't figure out how much sleep I should get.  So one night I had 2 hours of sleep.  The next I had 5.  The next I had 4.  Ugh.  Those are the only issues I had with staff or hospital problems.  Other than that, as Br0 has stated, wireless internet would be fabulous.  I have a lot of my seizures just sitting at my computer typing.  The familiarity with my own computer would be less stressful and more helpful to the entire process. 

The Pleasant Category would be huge if I started typing everything out.  The staff was awesome, my doctor was informative, and everyone was very pleasant.  I was there for five days but the sitting in a hospital bed with leads attached everywhere, a box on my chest, ekgs on my chest and getting up to use the bathroom only under supervision was very difficult for me.  I didn't seize at all.  I blame it on the fact that I wasn't in my normal routine and doing normal things.  I felt so much anxiety about not seizing that I can't believe I didn't seize.  Now I find out that a lot of other people have the same reaction to the VEEG and don't have a seizure either.  I think patients need to be told from the beginning that it might happen to them. It made me feel like a fraud even though I consistently had seizures at home.  Then you see other people go home after they've had seizures and you feel depressed.  It's awful!  Even though I didn't seize there was enough evidence in the EEG and my previous neuro's findings to conclude simple and complex partial seizures.  I wished I could have a conclusive diagnosis though....

For now, that's all I can remember of the experience.  Hope this helps!

 

 

Re: Feedback for veeg, seizure monitoring!!

I was in the unit three and a half years ago now.  Thank you for sharing your story with me, you helped refresh alot of things that were running through my head also.  I was in there for 2 weeks before I had a seizure, and the whole time I felt like they must have thought I was making the whole thing up.  I was so stressed out!!  I am currently working on convincing them how important it is to have a connection to the internet. 

 

Best of luck to you in the future,

Good for you for asking on

Good for you for asking on this sight! I for one, really appreciate it. I had a 6 day VEEG a few months ago. The staff was fabulous and very and caring. I have to agree it is a VERY difficult time.  I felt very lonely even though I had some of my family with me. The hardest part was after they went home and the sleep deprivation began...every other night I had to stay awake until 2 am. At 2 I was then allowed a 3 hour "nap". So that part of it was almost pathetic for me. I really missed my husband and daughter that late. I was near tears most late nights.

Here are a few things I feel could be greatly improved: The glue that is used really needs to do less damage on hair after the electrodes are removed! I had to wash my hair a whole lot bedfore all the glue was out. Of course, it caused a lot of breakage. One more issue...it wasn't until the 3rd night that I knew I could ask for a sleep aide on the nights I could actually sleep. That is huge because after staying awake so long, it is actually difficult to fall asleep right away.

That was my experience and I am so blessed to have had such nice people taking care of me!

Re: Feedback for veeg, seizure monitoring!!

Hi Mama-Mia

I hope things work out great for you! As for me I myself had a VEEG done in the EMU floor at Ruby Memorial Hospital in Morgantown, WV also known as West Virginia University Hospital. Mine was done summer of 2007. My experience there as a patient went very well.  I had my 1st seizure right after I turned 24 in 2005.  There was no known cause and I had several  EEG's and MRI's done with no luck whats so ever as to where my seizures are comming from. Finally in summer 2007 after 2 years I was put in the EMU at WVU Hospital and placed on a VEEG right after I had a very severe Grand Mal. Unfortionatley, nothing happend until I was there for 6 days and they took me completley off of my meds.  It was not until the next day when I got a call from the neuro. who was on my case told me that the regular electrodes that I had on my head actually saw that I had a very small petit mal in my Left temporal lobe which obviously was not seen on the video.  After that i did have another Grand Mal that following November where the docs hooked me up to the regular EEG and they were still comming from the same place.  That was my last grand mal which I was having every 3 months, but this year in 2008 I started having petit mals every other month before my periods.  This past June I had the WADA Test done since i was conciderd a "perfect candidtate" for surgery. My tests came back in September and were great. I just had the surgery done to my Left temporal Lobe last month on November 4th.  I am doing great so far. As for the result of what was found in the VEEG things have been doing great. In fact, the VEEG was the only thing that found out what was wrong with me. It is a shame however, that the only way of finding someting wrong is to make it happen. In fact, because of how the VEEG changed my perspective I have even started to tell people all over this site just how well it worked for me!

 

 

 

Re: Feedback for veeg, seizure monitoring!!

been in two different units.

safey related issure.  wi-fi available on unit.  eliminates boredom and gains better compliance with safety restrictions.   better t.v programming availablility.  electric motor operated side rails in the bed that the patient can operate, to reduce the possibility of falls,  when people need to go to bed, and to make it easier to raise the side rails for safety compliance after they return to bed. eegs leads that are shielded from electrical sourses. ie.  charging batteries on a laptop while using the laptop.

standard instructions for all eeg techs, and certifications that they have met these standard prior to working on the unit.  in both places no two tech even placed the leads in the same place.  only one tech use the measurement technique, in lead placement.

just some thoughts,  thought it may be of help.  rikk

 

THANK YOU!!

I am now meeting with new nurses to help give them an idea of what it
is like for a patient in the monitoring unit.  Your comments really
help me give them a wide view!! Thank you so much!!