Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Just thought I'd add my 2 cents about neuropsych.... Chiari is a physical disorder, but it has psychological ramifications with short term memory problems, etc. A good neuropsych can help you to discover how chiari has affected you, and just knowing this can help you manage yourself better in life. They have many ways that you can try to repattern your tired chiari brain with biofeedback, counseling, etc. A neuropsych has been invaluable to me and is an integral part of my wellness program. The body is a whole system and chiari has affected me on every level. Take care all, Barbara in Florida ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. ------------------------------------------------------------------------ WACMA Site: http://www.pressenter.com/~wacma Your Personal support group member page: http://www.eGroups.com/group/chiari/ **Avoid List Congestion: Unsubscribe from this list: mailto:chiari-unsubscribeegroups Contact list mgmt: mailto:chiari-owneregroups ------------------------------------------------------------------------ -- Talk to your group with your own voice! -- /VoiceChatPage?listName=chiari & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Just thought I'd add my 2 cents about neuropsych.... Chiari is a physical disorder, but it has psychological ramifications with short term memory problems, etc. A good neuropsych can help you to discover how chiari has affected you, and just knowing this can help you manage yourself better in life. They have many ways that you can try to repattern your tired chiari brain with biofeedback, counseling, etc. A neuropsych has been invaluable to me and is an integral part of my wellness program. The body is a whole system and chiari has affected me on every level. Take care all, Barbara in Florida ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Hello, Sorry you went through an exhausting day. First of all did you go to a neuropsychologist? Secondly, you must go to a neuropsychologist who will break their testing in segments for you..maybe 2 hours here, etc. If you go to this professional who has treated people with our conditions...this would benefit you. I can relate to you as I disagree with the standardized intelligence and cognitive batteries which are administered by Neuropsychologists and Psychologists.......I do not think these tests accurately assess our cognitive problems, etc. For the simple reason, is our cognitive problems may or may not be neurological or permanent-they fluctuate by the minute. Also, our fatigue and exhaustion are not observed in ways to make this testing arrangement adaptable for our disability. Lastly, there are no standardized norms to compare or testing results to a population which compares to ours....again how can we be tested...when we do not even have a true diagnosis. I too have been tested in this fashion in order to get SSD and was refused the first time. I cried during the testing-I was so depressed........I have a MS degree and many years of experience...and I could not name 7 continents. Isn't it true that we can read pages and pages of medical research articles or e-mail letters.....but we cannot find our keys or for that matter, remember we we live sometimes.....I could not remember what type of dog I have....that is why I said our cognitive deficits fluctuate....and cannot be accurately tested. I have a very wonderful professional friend who is a Neuropsychologist-very knowledgeable and treats patients who have our illness....whatever that may be......but he does the testing as well.....I disagree and I have given some of the cognitive tests myself in the past to other patients. We do not need IQ tests.....we need cognitive therapy and retraining...... As far as Dr. Rosner and Dr. Flecha, I know them well and they are wonderful physicians. I know they understand the results of these tests and I truthfully, would not think they would put a lot of emphasis on these results after you have explained this to them. Both physicians have seen a lot more patients like us than we know ourselves....they see the same cognitive problems. So, in the future, first of all....I am very sorry you had to go through this dreadful situation. But next time, speak up...say you cannot do it..maybe the neuropsych was evaluating you to see how long you could tolerate and pay attention to the testing.......and also, do some followup to find out the professional experience of the neuropsychologist, which is not the same as a psychologist. Remember.......you are the most important person....and you are ill........do not do anything that does not feel good...........whether they are doctors or not.....they do not really know how you feel.......... Hope that helps.....you are not alone...a lot of us have gone through this process to find out the same thing you did......I would respond to this psychologist and tell him how you feel. Anita J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 Just to let you all know, I spent an 8 hour (exhausting) day with a neuropsych last year. The psych talked with me about 45 minutes or so and then passed me along to another gal who did the objective/subjective testing. I had authorized a copy of his report to come to me, to Dr. Rosner, and to Dr. Flechas. He would not let me have a copy unless I went and saw him to discuss it (never was told that when I initially went). Anyway, I got my hands on it (won't say how) and he labled me as someone who could retaliate against doctors - that I blame them for not curing me, yada, yada, yada... Anyway, he somehow decided he knew all about me in his 45 minute session, because that's what the essence of the report was - never got the objective results. I honestly think he said this because I told him I did not like psychs - one asked me out after he " cured " me years ago, and I ended up dating another (later on in life) - terrible to say, but I had no desire to talk to this guy, and he gave me the creeps anyway. The gal doing the (mostly) objective testing was great. That is my experience, but I doubt many of you would have the same...remember I am " postal. " Beverly B. in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2000 Report Share Posted March 7, 2000 I should have said that I don't want to take away someone else's good experience. I am sure their are good neuropsychs out there too...sorry if I offended anyone. Beverly B. in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 Hi, I read your post Barbara (in Fla) about Neuropsych. I have never heard of one. It sounds interesting. How are they listed and how do I go about finding one? Is this something an insurance company would even consider paying for? Red Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 My son is 4-1/2 and we went to a neuropsychologist for an evaluation last summer. The main reason for the visit was that we knew he had chiari, but were unsure as to whether he was having symptoms because of so many other medical complications. The evaluation was to give us a baseline idea on 's abilities so that we would be able to see if he were to slip backwards in his cognitive or functionable abilities. I was very impressed with the doc - he gave us a lot of time and wrote a very helpful, 8 page report that summed up 's abilities and history. The first visit was by myself to go over all the facts of his medical condition and what I was looking for. The next two visits were testing, and the third was by myself to discuss the results. He had me and the preschool teacher fill out questioneers about in addition to his own testing. He gave me some great advice on schooling for and what we should be doing at this point as far as therapies, etc. I the next few months, had developed a syrinx and we knew we had to decompress him. He is doing fine now and we just had the post op MRI showing the syrinx to be gone! The insurance paid for the visit - we have an HMO and went through the referral channels. Marge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Dear Red Robin and others interested, My neuropsych was referred to me by the leader of a Chronic Fatigue Support Group, so maybe a support group in your town would have good 'word of mouth' advice. This way I was sure to find a really good one that was caring and patient oriented. I guess it might be the same for them as it is for physicians - you have to do have to do a little homework. The office was also listed in the phone book under Psychologists. Although there was not a separate listing for neuropsych, the name of the company is 'Neuropsychological Associates.' My neurosurgeon told me that it takes a few years to recover from the surgery, and the nurse said they don't even begin to measure your progress until 1 - 2 years after. It would be nice if, just like stroke patients, we had this opportunity to retrain our nervous systems as best we can. Good luck! Barbara in Fla ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
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