Guest guest Posted January 1, 2000 Report Share Posted January 1, 2000 , Maybe your mom had a mylogram?? I had oneatage 14 in 12984. It seemed barbaric t me at the time, but jsut a pre MRI medical procedure in actuality. " A. Fusca " wrote: > From: ffusca@... ( A. Fusca) > > Hi , > > Sorry but I have never heard of Dr, Dennery. Ottawa is about a 5 hour drive > from Toronto so the two cities are not that close together. > > I had my first operation in June/79 at Toronto General. I recall my hospital > stay was not that bad. There were a lot of things I did not expect but... > > The only test I had was a CT scan (MRI's were not invented then). The CT > scanner came out in the 70's. Perhaps Ottawa General did not have one and > had to do a series of tests to confirm the problem. Have a good New Year and > hope this helps! > > > > >This past Christmas I used my visit to my Grandparents as a fact finding > mission. I gathered as much info about my mother as I could. She had two > surgeries in the summer of 1975 at the Ottawa General hospital. Her doctor > was Dr. Dennery (sp?). I read something she wrote about her stay in the > hospital, and it sounds like in the '70s they were barbarians. I forget > what the proceedure is called, but they had to drain all her spinal fluid, > and pump air in to do imaging. And other horrible tests. And after that, > they still had to do exploratory surgery before they removed her tumour. I > need more information about her though. Does anyone know this Dr. Dennery > fellow? (? ?) How can I go about getting her medical records? > > > > > ><!DOCTYPE HTML PUBLIC " -//W3C//DTD HTML 4.0 Transitional//EN " > > ><HTML><HEAD> > ><META content= " text/html; charset=iso-8859-1 " http-equiv=Content-Type> > ><META content= " MSHTML 5.00.2722.2800 " name=GENERATOR> > ><STYLE></STYLE> > ></HEAD> > ><BODY bgColor=#ffffff> > ><DIV><FONT face= " Comic Sans MS " size=4>This past Christmas I used my visit > to my > >Grandparents as a fact finding mission. & nbsp; I gathered as much info about my > >mother as I could. & nbsp; She had two surgeries in the summer of 1975 at the > >Ottawa General hospital. & nbsp; Her doctor was Dr. Dennery (sp?). & nbsp; I read > >something she wrote about her stay in the hospital, and it sounds like in the > >'70s they were barbarians. & nbsp; I forget what the proceedure is called, but > >they had to drain all her spinal fluid, and pump air in to do > imaging. & nbsp; And > >other horrible tests. & nbsp; And after that, they still had to do exploratory > >surgery before they removed her tumour. & nbsp; I need more information about > her > >though. & nbsp; Does anyone know this Dr. Dennery fellow? & nbsp; (? > >?) & nbsp; How can I go about getting her medical records?</FONT></DIV> > ><DIV> & nbsp;</DIV> > ><DIV><FONT face= " Comic Sans MS " size=4></FONT></DIV></BODY></HTML> > > > ------------------------------------------------------------------------ > See what's happening for NF2Con 2000! > http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 paulsherryray@... writes: Marcus: The test that you were referring to in '73, did they put you on a table and tilt it every which way? I had a test like the one you mentioned in '79 which was barbaric. They injected dye into my spinal column. They would stop occasionally so I wouldn't vomit all over myself. It was pure torture. A test that I have not forgotton about! I just can't remember the name of it! Anyone remember?????? Sherry >> ****************************************************************************** * Sherry-- I believe the test you're trying to remember--or forget--is a myelogram. I had one myself. When they'd finished with me, I was told to lay still for several hours and that I would get a monumental head if I got up. But I wasn't about to use a bedpan when nature called. The headache that hit me upon my return from the bathroom was among the most memorable of my 1971 acoustic neuroma experience. Steve Cherrington Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Hi , Can't help with the doctors, but I had the same test in 73. It was terrible, they stop for a while so you don't pass out during the test. You are strapped down and semi conscious. I wish someone could name this test, I thought I was imagining the damn thing. You had to lay still for about 24 hrs after it which is typical of having the spinal fluid drained. Yes it was totally barbaric. Worse than surgery. Should make us all realise that things do get better ! Hope you find the info you are looking for.... Marcus Need Help This past Christmas I used my visit to my Grandparents as a fact finding mission. I gathered as much info about my mother as I could. She had two surgeries in the summer of 1975 at the Ottawa General hospital. Her doctor was Dr. Dennery (sp?). I read something she wrote about her stay in the hospital, and it sounds like in the '70s they were barbarians. I forget what the procedure is called, but they had to drain all her spinal fluid, and pump air in to do imaging. And other horrible tests. And after that, they still had to do exploratory surgery before they removed her tumour. I need more information about her though. Does anyone know this Dr. Dennery fellow? (? ?) How can I go about getting her medical records? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Hi Sherry, YES,I believe your talking about a Milogram,I have had one of those horrible things and thought I wasn't going to survive.They did the most horrible things to me like putting me on a tilting table and shaking the hell out of my head to get the dye out. Lana in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Marcus: The test that you were referring to in '73, did they put you on a table and tilt it every which way? I had a test like the one you mentioned in '79 which was barbaric. They injected dye into my spinal column. They would stop occasionally so I wouldn't vomit all over myself. It was pure torture. A test that I have not forgotton about! I just can't remember the name of it! Anyone remember?????? Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Hello and everyone, Happy New Century! I do hope we're moving in that direction in saying that MS and GK will be obsolete treatmements for NF2. I was just thinking about of posts past: someone mentioned a long time ago that the reason why NF2's age of survivability has gone up is because of the modern technology being offered to treat and detect the new tumors at large (ie MRI, CT...etc). Have a wonderful, healthy and safe New Year! Mark ----Original Message Follows---- I'm sure medicine will be so advanced that MS, GK, or any other treatment will be obsolete. We'll probably just take a pill, and our tumours will go away. What's more likely is that they'll synthesize the defective gene product, and our tumours won't even grow! Here's to the future! Flying cars and all! ----- > Marcus: > > The test that you were referring to in '73, did they put you on a table > and tilt it every which way? I had a test like the one you mentioned in > '79 which was barbaric. They injected dye into my spinal column. They > would stop occasionally so I wouldn't vomit all over myself. It was pure > torture. A test that I have not forgotton about! I just can't remember > the name of it! Anyone remember?????? > ------------------------------------------------------------------------ See what's happening for NF2Con 2000! http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Hi , I agree 1000%,thank GOD for MRI's.....I have had some very horrible tests along with an angiogram also.When I had the Mylogram I was just a teenager myself and it was a horrifying experience I have NEVER forgotten,and also remember the knitting needle size needle they jamed in my back. It's just nice to know that your not alone in this battle:)isn't it:)And oh yes,another vivid memory was of after the test was over and I was so sick and half dead,they took my pillows away for 24 hours. Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Hi , I agree!!!Here's to our future.I wrote an article for English Class one day and it was about the future and my visions were of people flying around like Jetson:)Wouldn't that be grand. Those tests your talking of are horrible,just think of what the poor people went through years ago with this disease...I know I wouldn't be living at all.Anyhow I was reading about medical stuff many many years ago and ran across an article once about brain surgery being done on patients with tumors and that was when they had NO anesthetic or anything and the people were guiniua pigs and for surgery they stayed awake and for most brain surgeries they said the longest the people lived were about 12 days after having someone reach in there brain and pull the tumor out...ewwww what a horrible tourtourious death.It's interesting to read up on the practice and study of medicene years ago...It's like reading pure quackery and it leaves you thinking how in the hell these people survived.....no wonder the life spans years ago were so short.:)Dr's years ago had WIERD ideas and you actually laughed at some of it,it was so off the wall.The victorians had really wierd ideas and before that time. It was believed that years ago that if you were a diabetic that it was from unclean living and something bad got in your blood,anyhow you were a loose person.It would be real interesting to get ahold of a medical book from the 1800's and read through it,I am sure it would be like reading a halarious comic book.... It makes you wonder how they dealt with certain medical issues back years ago.Does anybody know or have you read old medical books?this would be fun to disscuss.I know I have a girlfriend and when her grandparents passed away she found in her grandmothers garage a medical book from the 1800's and it was horrible about some of the stuff they did.I really can't remember that much but....I do know years ago being diabetic was from a loose life style and unclean living and pregnant women couldn't be around gossipers because the baby would pick all that up and woman between the ages of 13 and 44 that had hysterics were to be held down and givin a half a cup of turpintine to drink to calm down,thats horrible.. So yes,here's to our future and the day they come out with a pill that attacks tumors and dissolves them and that day is coming,one of these years down the line and hopefully soon for our children. Lana in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Hi , Thats very interesting and I would love to know more about that....I can just imagine living with this disease and without adiquate medical treatment...gives me the willies to think of it.I know I complain from time to time and get very fustrated because evan living in the states is hard for me.I live on dissability of a little over 500 dollars and have 2 children,they dont live with me full time but I have to provide for them all the time and my son was just herre for a week and a half and its amaizing how fast money goes. Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Mylogram?? paulsherryray@... wrote: > From: paulsherryray@... > > a It was pure > torture. A test that I have not forgotton about! I just can't remember > the name of it! Anyone remember?????? > > Sherry > ---------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Marcus and Sherry, I've looked up my mother's notes, it turns out she had BOTH of these horrible tests done, and more. The first one Marcus talked about where they drain the fluid and pump in air she called a " pneumoncephalogram. " However, I can't find any reference to this test using this name. In the book, " When the Air hits your brain, " the author talks about this test, but I can't remember what he called it. The dye test Sherry mentioned is called a myelogram. She also had to go through an angiogram, which is where they inject dye into you blood vessels, and then X-ray the area of interest. In her case, they inserted a tube in her groin, and worked it all the way up to her neck before they injected the dye. I sure am glad I was diagnosed in the '90s -- a CT scan, then an MRI. Pffft, that's it! In 20 years from now, I'm sure medicine will be so advanced that MS, GK, or any other treatment will be obsolete. We'll probably just take a pill, and our tumours will go away. What's more likely is that they'll synthesize the defective gene product, and our tumours won't even grow! Here's to the future! Flying cars and all! ----- > Marcus: > > The test that you were referring to in '73, did they put you on a table > and tilt it every which way? I had a test like the one you mentioned in > '79 which was barbaric. They injected dye into my spinal column. They > would stop occasionally so I wouldn't vomit all over myself. It was pure > torture. A test that I have not forgotton about! I just can't remember > the name of it! Anyone remember?????? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 I had a myogram in '84 at age 14, it wasnt fun, but don't remember it being " that " bad. i do remember having to lay down for 24 hrs afterwards, I had to remain in the hospital. Wait, I remember more now, they gave me valium to calm me down, it " was " pretty bad. ick! thank God for MRI's!!!! Kizzycom@... wrote: > From: Kizzycom@... > > Hi Sherry, > > YES,I believe your talking about a Milogram,I have had one of those horrible > things and thought I wasn't going to survive.They did the most horrible > things to me like putting me on a tilting table and shaking the hell out of > my head to get the dye out. > > Lana in Minnesota > ------------------------------------------------------------------------ > See what's happening for NF2Con 2000! > http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Hi , I hope you are right. But often I feel the more things change, the more they stay the same. Perhaps this is what people were saying 20 years ago. 20 years is a long time but research takes a long time too. I have two small children. For them and all the other kids that may have NF2, I hope in my heart you are correct. > In 20 years from >now, I'm sure medicine will be so advanced that MS, GK, or any other >treatment will be obsolete. We'll probably just take a pill, and our >tumours will go away. What's more likely is that they'll synthesize the >defective gene product, and our tumours won't even grow! > > >Here's to the future! Flying cars and all! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Interesting topic Lana (mediocal treatment from the 1800's) I have often wondered about med treatment foor NF2 right now for people in communist countries like Cuba, China, and dirt poor 3rd world places. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 , I think the treatment is slow agonizing death. Cruel isn't it? Mikey A At 08:20 PM 1/2/2000 -0500, you wrote: > > >Interesting topic Lana (mediocal treatment from the 1800's) I have often wondered >about med treatment foor NF2 right now for people in communist countries like >Cuba, China, and dirt poor 3rd world places. >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 HELLO, WELL I SURE THOUGHT OF ALL OF THE HORRIBLE TESTS THAT I HAD IN THE 70,S I KNOW THE PNEUMOINSUFFRIGRAM IS WHERE THEY PUT ME IN A CHAIR AND STRAPPED ME IN IT FELT LIKE THE ELECTRIC CHAIR I WAS SO AFRAID AND THEN THE ROOM WAS FULL OF DRS AND NURSES, ONE NURSE HAD A BLANKET AND ONE HAD A COLD TOWEL AND A PAN AND THEN THEY VLEW AIR IN MY BRAIN AND I REMEMBER CRYING AND VOMITING AND BEGGING THEM TO STOP AND THEN 4 MEN TURNED ME OVER AND OVER TO TAKE THE PICTURES OF MY BRAIN IT WAS THE ONE TEST THAT FOUND MY TUMOR AND SAVED MY LIFE ALSO I HAD THE ONE THAT WENT FROM THE GROIN TO MY BRAIN THIS WAS ALL DONE AT A HOSPITAL IN OAKLAND THE NEXT MORNING I WAS TAKEN BY AMBULANCE TO USSF HOSPITAL THEY HAD TO WAIT 2 DAYS TO DO SURGERY BECAUSE I WAS SO WEAK FROM THE TESTS, I SAY THANK GOD EVERY TIME I HAVE AN MRI!!! GAIL ROSE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2000 Report Share Posted January 3, 2000 Amen . Jeff Wurst Re: Need Help Marcus and Sherry, I've looked up my mother's notes, it turns out she had BOTH of these horrible tests done, and more. The first one Marcus talked about where they drain the fluid and pump in air she called a " pneumoncephalogram. " However, I can't find any reference to this test using this name. In the book, " When the Air hits your brain, " the author talks about this test, but I can't remember what he called it. The dye test Sherry mentioned is called a myelogram. She also had to go through an angiogram, which is where they inject dye into you blood vessels, and then X-ray the area of interest. In her case, they inserted a tube in her groin, and worked it all the way up to her neck before they injected the dye. I sure am glad I was diagnosed in the '90s -- a CT scan, then an MRI. Pffft, that's it! In 20 years from now, I'm sure medicine will be so advanced that MS, GK, or any other treatment will be obsolete. We'll probably just take a pill, and our tumours will go away. What's more likely is that they'll synthesize the defective gene product, and our tumours won't even grow! Here's to the future! Flying cars and all! ----- > Marcus: > > The test that you were referring to in '73, did they put you on a table > and tilt it every which way? I had a test like the one you mentioned in > '79 which was barbaric. They injected dye into my spinal column. They > would stop occasionally so I wouldn't vomit all over myself. It was pure > torture. A test that I have not forgotton about! I just can't remember > the name of it! Anyone remember?????? > ------------------------------------------------------------------------ See what's happening for NF2Con 2000! http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2000 Report Share Posted January 4, 2000 Hi Sherry, Let's HOPE like hell the mylograms are retired !!!!!!!! Lana in Minnesota )) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2000 Report Share Posted January 4, 2000 , Marcus and : I've been sick for a few days, so sorry for the delay. Yes, it sounds like the torture test was called a mylogram (sp). However, someone mentioned they are glad they had things done in the 80's. Well, I just had an angiogram (again) in Aug. 1999. That technique hasn't seem to have changed much since 79, except that I had a very bad reaction after the test was completed. They got me back to normal within a few hours. I honestly thought I was checking out during that episode. (And of course the hospital didn't have an explanation!) ) I don't know if they do those mylogram's anymore, anyone know? Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2000 Report Share Posted January 4, 2000 > I don't know if they do those mylogram's anymore, anyone know? > > Sherry- i had one in 85- yesh i was pukin and pooin white stuff for hours- speedy > ------------------------------------------------------------------------ > See what's happening for NF2Con 2000! > http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 if you do, please post it to CEDA, so I can hear about it too Louise in ton P.S. so where are you??..... > Need Help > > > Please excuse me if you get this twice but I emailed it out earlier > and my server isn't sending my emails out right. > Can anyone tell me the name of a good rheumatologist in the Chicago > area? One that is familiar with EDS? > thank you so much! > Kristi > akhddevo@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 I am in Springfield, which is a medium sized city (and capital) but I was the first person in Springfield to be diagnosed and now there are two of us and we both have the same doctors who fully admit that they are at a loss and do not know how to treat us and would really like some input from someone that has seen other EDS patients so that they can get some good ideas on what to do next. I am 26 and the other girl is 20, she and I are both hypermobility type with some classical symptoms. There are some differences of course in our symptoms, but the majority of them are the same - we have formed our own mini-support group of 2 hehe! Thanks! KRisti Need Help > > > Please excuse me if you get this twice but I emailed it out earlier > and my server isn't sending my emails out right. > Can anyone tell me the name of a good rheumatologist in the Chicago > area? One that is familiar with EDS? > thank you so much! > Kristi > akhddevo@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Hi Helen Welcome to the group. I am sorry to hear your daughter has been diagnosed with IGAN, a frightening thing for any mother to hear. Not having children myself, I am not much help there, but there are mothers in this group with children who have IGAN, and I know they would be only too willing to share their experiences with you. On a positive note, children with IGAN can sometimes go into permanent remission, but I am afraid with most bouts of sickness she may well have episodes of blood and protein in her urine. I am sure you are communicating with your medical team, and information is key in enabling you to deal with this. I would certainly keep an eye on your daughter of course, but otherwise when she is well, enjoy your lives. If you have any further questions please do ask. Best wishes Need help I have a daughter she just turned 6. One month ago, she had a stomach flu and her urine had blood and protein. Doctor did a kidney biopsy and told us she has IgA Nephropathy. We were very sad to hear this bad news. I searched the web and found this wonderful group. I hope somebody can help me to understand this disease. The doctor said every time my daughter gets sick, her urine would have blood and protein. After she recovers from the sickness, her urine will change back to normal. But now two weeks after the stomach flu, her urine is still dark and foamy. Does anyone know usually how long it takes for urine to get back to normal? If her urine never gets back to normal, what does this mean to us? Does this mean her kidney already damaged? She loses blood and protein everyday through erine, does this hurt her body? We live in Phoenix, AZ. Anyone know who is the best pediatric kidney doctor here? Thank you very much. Best wishes to all of you. Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 hi all i have had fibro for 1 year now but i can not cope anymore i keep being in bad moods and my hubby thinks i am only being a pig but he dose not understand how i am feeling could some one help i can not take much more Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 Fmaureen , Welcome to the family hun... sorry you have FMS but glad you found us here ... you will get the support you need right here and the questions answered for you also . We are all so full of information, and some informative and some funny you know.. anyway's.. sorry that you are feeling so sad it comes with the disease.. do you have a doctor and are you on meds... what is your treatment plan?? Again welcome, and hope to get to know you soon Huggles you lots Sophia -------Original Message------- From: fmaureen2002 Date: 11/28/04 11:03:17 Quote Link to comment Share on other sites More sharing options...
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