Guest guest Posted September 20, 2002 Report Share Posted September 20, 2002 Hey guys....Laurie smiley@... is trying to get more information from anyone that has seen Dr. Menenez ,,,She asked once before and hasn't heard much....If you have any information for her, either positive or negative...Please let her know...Thanks a bunch! Best wishes, Sally R ACM..Decompression '91... Hydro..VP shunt..2 revisions Doing GREAT in Bethlehem,Pa with NO medications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 I think I know what you are talking about. Its almost like the buzzing noise or feeling. but when it happens if Im about to go to sleep I get a paralized feeling and cant move or call out its so scarry. Is this even close to what you are discribing? Robin In Alabama question ok..I will describe this as best I can... wondering does anyone else have this feeling when they lay down and...not quite spinning but definately feels like movement in maybe a very slow circular motion? Mine is always to the left (complimenting my walking these days). Not like a make me nauseous thing but weird almost like a breeze associated with the motion ....always left or I should say clockwise. can't figure out if it's just when I am trying to go to sleep when it's really quiet in the house...except for the obnoxious ringing in my ears... I have a weird feeling it's always there though just more noticable when I try to sleep and there's nothing distracting me. love light and peace Tam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 I get this weird feeling (was worse before surgery) when I would lay down or recline it would feel like I was " rocking " or swaying, like in a boat. Esspecially bad in the recliner...I even thought my son was behind the chair pushing on it! I don't know what causes it though. a in WA From: MusicScooter@... To: chiari Subject: question Date: Tue, 15 Oct 2002 15:57:20 EDT ok..I will describe this as best I can... wondering does anyone else have this feeling when they lay down and...not quite spinning but definately feels like movement in maybe a very slow circular motion? Mine is always to the left (complimenting my walking these days). Not like a make me nauseous thing but weird almost like a breeze associated with the motion ....always left or I should say clockwise. can't figure out if it's just when I am trying to go to sleep when it's really quiet in the house...except for the obnoxious ringing in my ears... I have a weird feeling it's always there though just more noticable when I try to sleep and there's nothing distracting me. love light and peace Tam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 I'd be interested in replies to this... My head has always tilted to one side as well...how odd! in Ohio ACMI - 10mm No surgery Question Hello everyone, I have a quick questions. More and more hear lately I have been noticing that when I am sitting hear looking at the screen and reading, that my head tilts, it just kinda falls to the right. When I notice it I will try to straighten it back up but it just feels like it wants to fall back over to the right. Could this be chiari related to do you think it is just a bad habit. Also, I was wondering, I have heard people talk about when they cough they get pains. I don't get pains when I cough, but I do get very dizzy. I am not talking about when you cough for an hour straight and get light headed, I mean I will barely cough maybe twice and then I just get very dizzy and tingly feeling in my hands. Does anyone else have these problems. Sorry so long and thanks to all in advance. Thank you, Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 I've been doing the same thing for years! My neurosurgeon is one of the few people who noticed it and asked about it. This was before my surgery. I told him I did it for years ....... he looked at the MRI's again but didn't say anything else about it. I'd be curious too. the Other Question Hello everyone, I have a quick questions. More and more hear lately I have been noticing that when I am sitting hear looking at the screen and reading, that my head tilts, it just kinda falls to the right. When I notice it I will try to straighten it back up but it just feels like it wants to fall back over to the right. Could this be chiari related to do you think it is just a bad habit. Also, I was wondering, I have heard people talk about when they cough they get pains. I don't get pains when I cough, but I do get very dizzy. I am not talking about when you cough for an hour straight and get light headed, I mean I will barely cough maybe twice and then I just get very dizzy and tingly feeling in my hands. Does anyone else have these problems. Sorry so long and thanks to all in advance. Thank you, Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Ditto. Even when I was younger, & I used to do a lot of singing, every vocal teacher, choir director, etc, were constantly after me to hold my head up straight. I still lean it to one side, all the time. Wonder if there IS a common thread here w/ACM. Carla in St. Louis Question Hello everyone, I have a quick questions. More and more hear lately I have been noticing that when I am sitting hear looking at the screen and reading, that my head tilts, it just kinda falls to the right. When I notice it I will try to straighten it back up but it just feels like it wants to fall back over to the right. Could this be chiari related to do you think it is just a bad habit. Also, I was wondering, I have heard people talk about when they cough they get pains. I don't get pains when I cough, but I do get very dizzy. I am not talking about when you cough for an hour straight and get light headed, I mean I will barely cough maybe twice and then I just get very dizzy and tingly feeling in my hands. Does anyone else have these problems. Sorry so long and thanks to all in advance. Thank you, Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2002 Report Share Posted November 1, 2002 Hi Carla & Group: Yes siree ! ... It is one of the known symptoms of Chiari. Before I was diagnosed with Chiari, my hair cuts were never even on both sides ... Aww !! I would always be ragging on the hair dresser. Because most of us that do tilt our head to one side, some of us don't realize it. My mother always said. when I am reading .. say like the news paper. She would notice I had my head tilted to one side. I didn't acknowledge I was doing this. My Mother thought it was a habit ... Oh yeah, as for my Hair Dresser . LOL I had to apologize and explain. I did tell her I hated her hair cuts ... and switched stylists. But, when I found out I had chiari ... I found out why ..... The Hair Dresser would always be telling me to keep my head straight ... It was very frustrating ..... But, now .. I have explained it to her and she just puts my head in the right angle for me. As I don't realize when I do tilt my head. Well, just thought I add my experience. You can find this symptom listed on a web site. I can't remember which one. Maybe another group member can tell you. Take care & God Bless ! Debra Newfoundland & Labrador / Atlantic Canada " A Minute Of Thought Is Worth More Than An Hour Of Talk " Chiari I, 20 mm / No Surgery , " Yet " Question Hello everyone, I have a quick questions. More and more hear lately I have been noticing that when I am sitting hear looking at the screen and reading, that my head tilts, it just kinda falls to the right. When I notice it I will try to straighten it back up but it just feels like it wants to fall back over to the right. Could this be chiari related to do you think it is just a bad habit. Also, I was wondering, I have heard people talk about when they cough they get pains. I don't get pains when I cough, but I do get very dizzy. I am not talking about when you cough for an hour straight and get light headed, I mean I will barely cough maybe twice and then I just get very dizzy and tingly feeling in my hands. Does anyone else have these problems. Sorry so long and thanks to all in advance. Thank you, Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 The carpal tunnel could have actually been a part of the ACM. That was one of the first problems that I had (except for the fact that I also have Spina Bifida and thus I am paralyzed from the waste down). After the problems with carpal tunnel syndrome, my left hand and then arm became gradually weaker. That was caused specifically by a Syrinx. Take CARE and God Bless! from La Verne, CA Syrinx from c1-t11, Spina Bifida, ACM Type II Syringo-subarachnoid shunt with C6-C7 partial laminectomy (Nov. 1995) VP Shunt replacement (Nov. 1996) Posterior Fossa Decompression with laminectomy C1-C2, etc. (3/6/97) VP Shunt replacement (June 5, 1998) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 Cerebral infarct is a stroke. -- Question Hello All, I do hope that this is a pain free sun shinning kind of day for all. I need to have this translated. Does anyone remember Cerebral infarct? Is that damage to an area of the brain? Thanks Sheila Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 My mom has had gamma knife on I think 5 different tumors during 2 different treatments and each time worked the same and both times every tumor treated stoped growing. Olivia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 Hello everyone...I am scheduled to see a doctor in NY next month regarding a procedure called Interventional Neuroradiology and Therapeutic Embolization My question is, has anyone had this done or has anyone have even heard of this for nf2? thank you ................sixto (nyc) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 i've never heard of the proceedure, which Dr. are you seeing? the whole NF2 crew has NF2 or has family members who suffer from NF2... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 We've been talking about this on the crew as of recent. My big q uestion is what experience is there with this for NF patients where the nerves are incapsulated within the tumors? Our interventional radiologist says it would be very challenging for Anne because of where her abdominal tumor is and what it connects to. However, we have not gotten a team of docs to really look and bring their heads together on this. It is too new and there is too little experience with it. OUr IR worked at Norris cancer institute and did it quite a bit there but it was for cancer. Usually they prepare to remove the tumor after embolizing because the purpose is to cut off the blood supply which in normal surgery would cause one to bleed severely. That is all I know for sure. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 So, did anyone say they knew of this embollization? Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 nfaceo@... This is a's address Mikey question Anyone have a Tweedy's email address? ThanksBarbara lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Don't be scared! Dr. Levin is wonderful and your type of TR has great success rates. I thought the same thing, but , one of the group moderators, said that the ladies that have babies are so busy that they don't post as often. While trying to conceive, lots of us come here for support. Plus, one of our girls on here just got pg after her first cycle post-TR!!! I hope this helps! Good luck with Dr. Levin tomorrow!! Vicki TR 8-11-03 TTC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 I was scared too, But I have a better shot getting pregnant with the Tubal reversal than with my tubes tied!!! I am willing to take that chance and leave it in gods hands. -33 DH-32 DS-19 DS-15 DD-14 TL-90 TR-8/21/03 TTC > I am new to this site I have some question that maybe you all can answer I am > 35 and have four kids ages 16,14,12,9. I had tubes done in sept. 94, I am > considering haveing a tr done my first appointment is sept 9 with dr L. All i > have is the hulka clip. After reading some of the stories with some of you guys > having trouble getting pg.I am kinda scared. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Your chances should be great with the Hulka clip ligation. You'll feel much better after talking with dr. Levin. Good luck to you! Rhonda > I am new to this site I have some question that maybe you all can answer I am > 35 and have four kids ages 16,14,12,9. I had tubes done in sept. 94, I am > considering haveing a tr done my first appointment is sept 9 with dr L. All i > have is the hulka clip. After reading some of the stories with some of you guys > having trouble getting pg.I am kinda scared. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 , When we got a loan a feew yrs ago for about 6500, we have monthly payments of 140 or less, its paid off now but I think thats what we were paying. Tracie > Clear DayDose anoyone know what payments would be on a bank loan or finance loan on $6200.00 ? > We r thinking bout barrowing money towards our land for my TR but not sure if we could afford the payments or not i was just wondering if anyone knew what they would be or close to it . > We were guessin maybe around $200-$250 each month . > PATRICIA GRIDER > HAVE A GOOD DAY > ) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 wow i figured it would be more lol gose to show i havent barrowed money before huh lol Re: question , When we got a loan a feew yrs ago for about 6500, we have monthly payments of 140 or less, its paid off now but I think thats what we were paying. Tracie > Clear DayDose anoyone know what payments would be on a bank loan or finance loan on $6200.00 ? > We r thinking bout barrowing money towards our land for my TR but not sure if we could afford the payments or not i was just wondering if anyone knew what they would be or close to it . > We were guessin maybe around $200-$250 each month . > PATRICIA GRIDER > HAVE A GOOD DAY > ) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Hi I don't know what the payment would be on a bank loan but if you get a mortgage on your land value you can deduct the interest on your taxes and the payment could be lower. My DH and I are considering a second mortgage on our house for that very reason. I think mortgage rates are about as low as they are going to get considering we just refinanced at 5% in July. You could also consider a cash out refinance. If your current interest rate is 7% or more, even if you add $6200 to the payoff amount of your loan it wouldn't change your house payment and could possibly still lower it depending on how much equity you have in the home. A lower house payment PLUS deductible interest is a good combination and better than the 11-17% you would pay for just a secured bank loan that isn't deductible. Just an FYI...Good Luck! Hazel > Clear DayDose anoyone know what payments would be on a bank loan or finance loan on $6200.00 ? > We r thinking bout barrowing money towards our land for my TR but not sure if we could afford the payments or not i was just wondering if anyone knew what they would be or close to it . > We were guessin maybe around $200-$250 each month . > PATRICIA GRIDER > HAVE A GOOD DAY > ) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 I too am trying to find funding sources. While I was married to my ex (I'll be nice) he messed up my credit really bad, so it is hard for my hubby (the good one) and I to find a loan. > > Clear DayDose anoyone know what payments would be on a bank loan or > finance loan on $6200.00 ? > > We r thinking bout barrowing money towards our land for my TR but > not sure if we could afford the payments or not i was just wondering > if anyone knew what they would be or close to it . > > We were guessin maybe around $200-$250 each month . > > PATRICIA GRIDER > > HAVE A GOOD DAY > > ) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 I have a loan through medicredit for 3000.00 and my payments are 134.00 for 3 years. HTP > Clear DayDose anoyone know what payments would be on a bank loan or finance loan on $6200.00 ? > We r thinking bout barrowing money towards our land for my TR but not sure if we could afford the payments or not i was just wondering if anyone knew what they would be or close to it . > We were guessin maybe around $200-$250 each month . > PATRICIA GRIDER > HAVE A GOOD DAY > ) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Could be an implantation bleed. Usually comes around 8-10 dpo. I sure hope AF doesn't find you. Vicki TR 8-11-03 TTC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Could be an implantation bleed. Usually comes around 8-10 dpo. I sure hope AF doesn't find you. Vicki TR 8-11-03 TTC Quote Link to comment Share on other sites More sharing options...
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