Guest guest Posted March 18, 1999 Report Share Posted March 18, 1999 Hi Eurico, Whrn Bret had his 1st decompression (not with frim) the nsg " cooked " his tonsils...can you believe he told us this?!? I guess they use extreme heat and the tonsils " shrink " Rene Brets mom ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 1999 Report Share Posted March 18, 1999 KC, What are the differences in the flow study which UCLA does and the one which was done in Michigan? As well, can you elaborate on " he touches the tonsils with a probe, which causes the tonsils to shrink up " ? Never heard of this. Has anyone else heard of this? Eurico wrote: Original Article: /list/chiari/?start=14148 > I have been reading the posts as I can at work, and have noticed posts lately > about Dr. Milhorat and also questions about Dr. Batzdorf. I have seen both of > these doctors and feel that they truly understand the symptoms and treatment > for Chiari. The kindest words Dr. M said to me were, " You're not crazy! " > > I have opted to have surgery done by Dr. Batzdorf because (he said he would do > it) and I wish to have the more " traditional " decompression surgery. I was > also very impressed by his manner - very kind and personable. I know there > are others on the list who do not care for him. In his procedure he touches > the tonsils with a probe, which causes the tonsils to shrink up. He says that > none of the patients who have had this done have had any problems due to this > technique. > > I am hoping to have my surgery in mid-June, after school gets out, so my son > can accompany me to California. Dr. Batzdorf also confirmed my suspicions > that my son (11 years old) also has the Chiari malformation. He will arrange > for my son to have a flow study done when we are out there on " vacation. " My > son has displayed many of the classic symptoms, esp. with coordination, but it > never hit me until a few weeks ago that it could be Chiari doing this to him. > Luckily I had an MRI film of his that I took with me out to CA last week. > > It is my understanding that the flow study I had done here in Michigan is not > the same as the one done at UCLA. I had kinda deduced this after reading > posts from this group. Dr. Batzdorf felt that his flow technique would show a > blockage on me due to the shape and placement of the tonsils. > > Also, in regard to the comments about post-surgical care, can we really expect > for a doctor to handle our care long-term from the distance? I guess I need > to do a bit of research on this before I have my operation. Hopefully my > family doc will help out. I will find out because he will do my history and > physical pre-op. > > The toughest problem I am facing now is my family. My brother gives me the > impression that I am making all this stuff up. Luckily I have learned from > you all that this is not unusual. It seems like if for no other reason, he > would be concerned that this thing is perhaps familial and that his kids could > potentially have it. Oh well, I cannot waste my energy on ignorance! > > KC > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 1999 Report Share Posted March 18, 1999 >When Bret had his 1st decompression (not with Frim) the nsg " cooked " his >tonsils...can you believe he told us this?!? I guess they use extreme heat >and the tonsils " shrink " Hi Rene, " Cooked " ...such professional terminology. My nsg had the courtesy of saying that he " cauterized " Danny's tonsils and shrunk them back towards the foramen magnum. Suzanne L. (Danny Boy's Mom) 4 yrs. old ACM 1, SM 6 months post-op, Children's Hosp., Boston ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 1999 Report Share Posted July 3, 1999 Your doctors even seem better than mine. She never gave me any numbers. When I asked her if I had to do something special for my feet she said, " Tickle, tickle " tickled my foot and that was it. I finally ordered her to send me to an endocrinologist. That's where I went this past Monday after 4 yrs. of being type 2. -moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 Hi, ; I started the list believing my own doctor was the only one who didn't tell me anything. I guess I'm not alone. Thanks for telling me I wasn't alone. I hope you find a better doc. After the time I got to see the P. A. instead of the real doc and I started to tell him about this list and he told me where to find the X rated sites and that his wife was a whiner; I got out of there and refuse to see him again. -moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 > > Your doctors even seem better than mine. She never gave me any numbers. > When I asked her if I had to do something special for my feet she > said, " Tickle, tickle " tickled my foot and that was it. > From what I understand diabetic patents are sure fire long term $$ for doctors. Typical office visit for me last about 4 minutes (3 with the Nurse 1 with the Dr.) and cost $100. First my blood is checked ($20) using the same method that I use. The doctor pops in reads the results, confirms that I am taking my medicine tells me he wants to see me in 2 weeks and he clears out. Without exception this is 9 out of 10 visits. 50% of the time I cancel the next appt. until I need more medication. Every 10 visits he sends me for a blood draw. If I don't ask he does not give me those results. As I indicated in an earlier post, I'm on my 7th doctor. ALL have been the same way. NEVER told what I should or should not be eating etc. I've received more information on this list in the past week than I have in 10 years for any doctor. One would think in Los Angeles I would " get lucky " and find a good health care provider. The last 3 doctors were recommended to me by the American Diabetes people. I'm beating the bushes for another in a few weeks.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 In a message dated 99-07-04 08:21:11 EDT, you write: << Kinda scarey , isn't it? I wonder why so many doctors seem to kinda blow us off? >> You know, It looks more and more like I have been insulin reisistant since I was about 7 years old. I certainly had PCOS since then. It was NEVER caught. I got diabetes urine screenings every year, but I was always within normal parameters. Even when I was having severe recurrant infections, diabetes was NEVER investigated any further because the urine test was always okay. I mean, what warning sign did I not have? Extreme thirst, very slow to heal, recurrant infections........ Every health problem I ever had was brushed off as a " weight thing " and " emotional/psychological " for over 20 years. Things that I am told are so clearly diabetes/insulin resistance/PCOS related were totally overlooked and misdiagnosed. Such a complete and total brush off. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 Hi folks, Hope you all are faring well with this heat wave. On the topic of doctors I would like to add my two cents. I was diagnosed with diabetes 2 last November. Three Years ago I went for a routine eye exam. The doctor asked me how long I had been diabetic for. I told her I wasn't and she said that I should see my primary physician. I did. He was so angry that an " eye doctor " thought she knew about medical practice. He told me to get myself together and go on a diet. I wrote a complaint to my HMO (LOL) and got the usual corporate line from them. Any how-the doctor I now have (the one who made the diagnosis last year) is one of the most wonderful folks I have ever met. He realized how upset I was when I first got the news-he spent over an hour with me discussing the world of diabetes. The followingnight he called me at home to see if I was OK and to see if my family wanted to come in and talk to him. He is quick to respond to my calls and always reviews with me new things I am learning about this disease. I am sorry to hear about folks who have not had a positive experience-my doctor has really helped me keep myself together. Thanks for listening, KC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 Kinda scarey , isn't it? I wonder why so many doctors seem to kinda blow us off? Meenie Re: doctors >From: petra@... > >Your doctors even seem better than mine. She never gave me any numbers. >When I asked her if I had to do something special for my feet she >said, " Tickle, tickle " tickled my foot and that was it. > >I finally ordered her to send me to an endocrinologist. That's where I >went this past Monday after 4 yrs. of being type 2. > >-moderator > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 , that's so discouraging <sigh> I think of all the people who are going to their doctor thinking they are helping themselves and they keep feeling worse and getting complications - what a sad commentary on the medical establishment. Isn't it a shame we have to handle our own medical care? Meenie Re: doctors > > > >> >> Your doctors even seem better than mine. She never gave me any numbers. >> When I asked her if I had to do something special for my feet she >> said, " Tickle, tickle " tickled my foot and that was it. >> >From what I understand diabetic patents are sure fire long term $$ for >doctors. Typical office visit for me last about 4 minutes (3 with the Nurse >1 with the Dr.) and cost $100. First my blood is checked ($20) using the >same method that I use. The doctor pops in reads the results, confirms that >I am taking my medicine tells me he wants to see me in 2 weeks and he clears >out. Without exception this is 9 out of 10 visits. 50% of the time I cancel >the next appt. until I need more medication. Every 10 visits he sends me for >a blood draw. If I don't ask he does not give me those results. As I >indicated in an earlier post, I'm on my 7th doctor. ALL have been the same >way. NEVER told what I should or should not be eating etc. I've received >more information on this list in the past week than I have in 10 years for >any doctor. > >One would think in Los Angeles I would " get lucky " and find a good health >care provider. The last 3 doctors were recommended to me by the American >Diabetes people. I'm beating the bushes for another in a few weeks.... > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 It's maddening, isn't it, to think how much better our lives could have been if these docs had actually followed up on our symptoms and just paid a little attention. Meenie Re: doctors >From: arts@... > >In a message dated 99-07-04 08:21:11 EDT, you write: > ><< Kinda scarey , isn't it? I wonder why so many doctors seem to kinda blow us > off? >> > >You know, > >It looks more and more like I have been insulin reisistant since I was about >7 years old. I certainly had PCOS since then. > >It was NEVER caught. I got diabetes urine screenings every year, but I was >always within normal parameters. Even when I was having severe recurrant >infections, diabetes was NEVER investigated any further because the urine >test was always okay. > >I mean, what warning sign did I not have? Extreme thirst, very slow to heal, >recurrant infections........ > >Every health problem I ever had was brushed off as a " weight thing " and > " emotional/psychological " for over 20 years. Things that I am told are so >clearly diabetes/insulin resistance/PCOS related were totally overlooked and >misdiagnosed. > >Such a complete and total brush off. > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 Hey KC, That is how my new Dr is and I love it. He is so supportive and Yeeppeeesss! when I do really well. I don't mind going to the Dr. now when before I built up so many anxieties that it made me sick. I live about 90 miles from my doctor he is in Houston, TX but it is worth it. Shelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 I heard this saying a while back and I believe it fits here: Doctors will only be brought down off their pedestals when patients get up off their knees. Take charge of your own health! Kramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 I too have had a positive experience withe my doctor. I had foot pain for two years and no one seemed to be able to figure it out. One Dr. even said maybe it was mental. It sure was making me mental!!!! Finally by a fluke I saw the new doctor at the family practice I use, and she picked up on Diabetes right away. It was she who turned me on to Low Carb as a WOE. When I learn something new from the list, I bring it to her and she is always receptive! I realize how lucky I am to have her, especially after reading everyone's experiences! She is a treasure. She also saves me samples of Glucophage and Ultram so I can keep my expenses down! I >am sorry to hear about folks who have not had a positive experience-my doctor >has really helped me keep myself together. >Thanks for listening, > > >KC > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 That is wonderful, KC and ... A good doctor is priceless! Meenie Re: doctors > > >I too have had a positive experience withe my doctor. I had foot pain for >two years and no one seemed to be able to figure it out. One Dr. even said >maybe it was mental. It sure was making me mental!!!! Finally by a fluke I >saw the new doctor at the family practice I use, and she picked up on >Diabetes right away. It was she who turned me on to Low Carb as a WOE. >When I learn something new from the list, I bring it to her and she is >always receptive! I realize how lucky I am to have her, especially after >reading everyone's experiences! She is a treasure. She also saves me >samples of Glucophage and Ultram so I can keep my expenses down! > > > > > I >>am sorry to hear about folks who have not had a positive experience-my >doctor >>has really helped me keep myself together. >>Thanks for listening, >> >> >>KC >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 AMEN ! Meenie Re: doctors > > >I heard this saying a while back and I believe it fits here: > >Doctors will only be brought down off their pedestals when patients get up >off their knees. > >Take charge of your own health! > > Kramer > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 Dear KC Where is this great doctor who takes time to worry about the family and calls your house to see if you're OK?? What state?? I'll be moving there shortly. -moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 1999 Report Share Posted July 5, 1999 Dear , Yes, if you can believe it a doctor who actually cares and takes time with his patients. Last week I had some tests done that had me quite worried. I told him how anxious I was feeling-when he got the test results back he called me at home and left his car phone number for me. When I first met him he was going away on vacation but made arrangements with another doctor to inform me of some other tests. I share this primarily because even though there are uncaring doctors out there lets not cloud the fact that there are some caring ones who are a blessing to their profession and to our lives. By the way I am in Pittsburgh PA. Apparently the University of Pittsburgh is a major research center in the field of diabetes. I have a great team who really cares. KC KELSO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 1999 Report Share Posted July 5, 1999 I also have a heart doctor like that. He has called at least once a week since I came home from the hospital. He has even stopped by and visited me once at my apartment. Also it was very interesting while I was in the hospital the second week he was out of the country on vacation and he called me at the hotel to see how I was doing as well as called his partner to see what was going on with my treatment. Now that is a very concerned doctor. Bill Newman -- Rochester, NY wnewman1@... wnserve@... Bill@... www.christianmerchants.com > From: petra@... > > Dear KC > > Where is this great doctor who takes time to worry about the family and > calls your house to see if you're OK?? What state?? > I'll be moving there shortly. > > -moderator > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 1999 Report Share Posted July 5, 1999 LOL , We may form a commune <G> Meenie Re: doctors >From: petra@... > >Dear KC > > Where is this great doctor who takes time to worry about the family and >calls your house to see if you're OK?? What state?? > I'll be moving there shortly. > >-moderator > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 1999 Report Share Posted July 5, 1999 Dear List, The doctor's nurse just called and said I need bloodwork done. I said I'd just had it done on June 10. She said well that was for your adoption and not for your diabetes. I said, it was the same test I have to have done now. I just had those tests at the endocrinologist's last Monday so I've had them done twice in 2 weeks. I refuse to have them done again. She slammed the phone down. My husband agrees with me FINALLY that I need a new doctor. -moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 - How did it go with the endocrinologist? Do you like him/her? I really like mine. She doesn't nag me about weight loss, but if I even lose two pounds from one visit to the next, she recognizes it, and is encouraging (when I lost 8 pounds in four weeks, she really got excited for me!) She checks my feet at every visit, and actually talks to me! Imagine that! At any rate, after I began seeing her, I found out that she has received the ADA's recognition for excellence in diabetes care. Guess I lucked out, huh? in Cincinnati Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 - Don't give up! That's how my internist dealt with my diabetes, too. Have you tried an endocrinologist? of diabetologist? I had much better luck with the endo. Also, I got my endo's name from a drug rep at a diabetes seminar. If you have access to such people, check with them. Good Luck! in Cincinnati Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 Yow, how rude. And they expect you to pay each time too, right. Get that new doc and tell the old one why you are leaving. Re: doctors > From: petra@... > > Dear List, > > The doctor's nurse just called and said I need bloodwork done. > I said I'd just had it done on June 10. She said well that was for your > adoption and not for your diabetes. I said, it was the same test I have > to have done now. I just had those tests at the endocrinologist's last > Monday so I've had them done twice in 2 weeks. I refuse to have them > done again. > She slammed the phone down. > My husband agrees with me FINALLY that I need a new doctor. > > -moderator > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 KC - That's great! It sounds like you found a gem. How are your eyes? Have you had them checked since diagnosis? Since your opthalomologist first discovered your diabetes, I would imagine he saw something. in Cincinnati Quote Link to comment Share on other sites More sharing options...
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