Yep, I figured!!
:( *No one*, on these forums, is in Mass!:(:(
Phyllis
:( *No one*, on these forums, is in Mass!:(:(
Phyllis
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A possible site to look for high level Epilepsy clinics is below. Level 4 is the TOP level in the NAEC scale.
Only registered and activated users can see links., Click Here To Register...
type in your zip and see what pops up.
--TravisComment
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Travis, thank you!! I will look into a couple of them. One of them, is the Dr., I have, already!...Lol Again, I truly
appreciate the help!!!:)
PhyllisLast edited by Ponygirl; 04-30-2012, 12:16 AM.Comment
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Don't get me wrong. Some Neurologists perform an outstanding job.
Now that I've switched to Epileptologists, I won't go back. In fact, the listing of that profession on my current doctor is why I chose him compared to the next listed staff, however both had that training I found out later. It was just not listed on the second one.
In the four years I've been at my current clinic (has it really been that long!?) I've had a few Video EEG's, way too many MRI's, and just this winter had brain surgery to remove damaged tissue (great result, no seizure yet!) after over 30 years of seizures. I went through 10 medications the last 25 years before surgery was offered. I even asked about the VNS before surgery was suggested. I wanted to do the least invasive before moving on.
If you wish to change to an Epileptologist, do your research. The Web is great for that. Just don't take everything you find on the web to be the exact and only truth. Ask the receptionist if you want for more information...Decide if you want to stay where you are at, or change. There's no guarantee you will have better results then where you are at now.
--TravisComment
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Yeah, I really am, considering, an epileptologist. I mean, it can't be worse, than, where I am, now.
I mean, I'm seeing just, a regular PCP, whom, can be seen for, *anything*. I really don't think, she
knows much, about, siezures.
PhyllisComment
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Try that link that Travis gave for naec --- Epilepsy centers. There are several at level 4 in the Boston area listed there. Lahey, MGH, Brigham and Women's, etc. It's a gold mine.Originally posted by Ponygirl View PostComment
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It is important to understand that the Levels of the Comprehensive Centers on NAEC refer to what the Center is able to do and the services they are able provide. Some are able to do intracranial monitoring and another may not have that device. Even though the Level is a 4 or a 3 etc. it is still of utmost importance to check them out. Ask the right questions, and if possible talk to other patients who are treated at the place you go. Just because they CAN do all options involved in treatment does not mean the quality is what is should be or what patients deserve. I can name one of those as I was the patient and could have died at a level 4 Center with a well known name. Name is just that. A name only. TattooComment
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Ummm,...Thank you VERY, much for the Info.!!! I think, I'll stick with my hospital!;)
PhyllisComment
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Travis, I went to that site you put & my center & Dr. are listed. Thats nice to know.Lorraine (lor)Comment
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:)
I know the clinic I go to on the list. Last year/early this year there was that top doctors in the US article...A couple of my docs there were listed. That was nice to see.Comment
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The Center that did my first VEEG where they let me stay n status for "a day" according to my doc is also on the list as a Level 4. I cold have died and their epilepsy program is horrible and all about them and NOT abt the patient. Even though they are on that list, you still have to know the place and their providers ability and quality of care as my experience shows. The one I transferred to that did my surgery is also on the list as Level 4 but they were wonderful!!!! I don;t think I could have asked for better! Only about 100 miles apart in the same state. The one that did me harm had a more well known name. Good name but horrible, negligent care. Just thought I'd share my experience. TattooComment
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