Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 Hi there I'd be very suspicious that your heart issues and other problems may be from the CHiari, it would be so unlikely for a 27 year old with an otherwise structurally normal heart to need a pacemaker, right? I think young women get ignored easily in medicine and a lot of neurologist don't pay much attnetion to Chiari and easily ignore it. I would try another neurologist or neurosurgeon that might have CHiari experience. MN should have good doctors. I think Dr. Iskander in Wisconsin has a good reputation and is not too far or maybe Mayo clinic? I didn't have luck at Mayo clinic with my tethered cord, they just could not even consider it as an option in an adult but for some people it might be a great place to go. The WACMA website also has doctors that members have recommended. Best wishes A > > Hi everyone! I am new here and just looking for some suggestions after > a discovery on an MRI and reading about chiari. > > I have suffered for a long time from debilitating migraines and have > seen specialist after specialist. I am currently seeing someone who is > supposed to be one of the " best " but is one of those who doesn't make > you feel very good after seeing them. After a recent terrible one that > wouldn't go away and a hospital stay and trying to figure out " what to > do with me, " he happened to pull up my MRI results from January on his > computer. He just said " ah, that was normal " but I happened to see > something on there about chiari malformation and when I asked he just > blew it off! So I called my regular clinic and asked them to fax me > the report and found that it says: > > " of incidental note, the cerebellar tonsils extend approximately 5 mm > through the foramen magnum, which represents a Chiari 1 malformation, > of doubtful clinical significance. " > > I start looking this up online and find that I have had a heck of a > lot of things that seem to go along with this! Back in junior high I > was diagnosed with CFS, I have neurally mediated hypotention and > failed the tilt table test miserably! I had sinus tachycardia and had > two ablations with left me with too slow of a pace needing a > pacemaker. I've recently been in with leg pain (which the doc gave me > pain meds and said it's nothing). And the list goes on! > > I just don't know what to do with this info since the neuro just wrote > it off as being nothing! I've always said there has to be something > wrong with me! I'm only 27 and I live in Minnesota if you have any > suggestions. Do I assume it's no big deal or do you think this is all > related? Is the report on the MRI a big deal? The thing that makes me > mad is that I can't even have another MRI now since I have a pacemaker > and had he seen this when I had the first one he could have done > further testing (knowing I was going to be getting a pacemaker)!!! > > Thanks for any help, suggestions, anything at all. > > Amy :-) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 Dearest " A " and Amy, I must disagree with " A " regarding your heart issues. I, too, had radio-frequency ablation for Chiari related heart issues and they warned me I may walk out of there with a pacemaker. Thankfully, I was one of the lucky ones who didn't need one. All I have left is a beat that flips every once in a blue moon (same feeling I use to get before an attack, but this " flipping " sensation never goes on to the attacks I once had.) They thought I had PSVT with Mitral Valve Prolapse - After the ablation, they determined I had AV Nodal Tachycardia. Bottom line, I was told by my surgeon this was most likely a Chiarian trait as many other patients have the same or similar diagnosis. By the way, " A " , if I understand her correctly, she has a pacemaker as a direct result of the two ablations - not because of her heart issues. The ablations can cause ones heart to lose correct rhythm. Amy, am I correct on my understanding of your situation? May your days be filled with love, kindness, compassion, understanding, and relief! With kindest remembrances ~ Namaste, alexgmd wrote: Hi there I'd be very suspicious that your heart issues and other problems may be from the CHiari, it would be so unlikely for a 27 year old with an otherwise structurally normal heart to need a pacemaker, right? I think young women get ignored easily in medicine and a lot of neurologist don't pay much attnetion to Chiari and easily ignore it. I would try another neurologist or neurosurgeon that might have CHiari experience. MN should have good doctors. I think Dr. Iskander in Wisconsin has a good reputation and is not too far or maybe Mayo clinic? I didn't have luck at Mayo clinic with my tethered cord, they just could not even consider it as an option in an adult but for some people it might be a great place to go. The WACMA website also has doctors that members have recommended. Best wishes A > > Hi everyone! I am new here and just looking for some suggestions after > a discovery on an MRI and reading about chiari. > > I have suffered for a long time from debilitating migraines and have > seen specialist after specialist. I am currently seeing someone who is > supposed to be one of the " best " but is one of those who doesn't make > you feel very good after seeing them. After a recent terrible one that > wouldn't go away and a hospital stay and trying to figure out " what to > do with me, " he happened to pull up my MRI results from January on his > computer. He just said " ah, that was normal " but I happened to see > something on there about chiari malformation and when I asked he just > blew it off! So I called my regular clinic and asked them to fax me > the report and found that it says: > > " of incidental note, the cerebellar tonsils extend approximately 5 mm > through the foramen magnum, which represents a Chiari 1 malformation, > of doubtful clinical significance. " > > I start looking this up online and find that I have had a heck of a > lot of things that seem to go along with this! Back in junior high I > was diagnosed with CFS, I have neurally mediated hypotention and > failed the tilt table test miserably! I had sinus tachycardia and had > two ablations with left me with too slow of a pace needing a > pacemaker. I've recently been in with leg pain (which the doc gave me > pain meds and said it's nothing). And the list goes on! > > I just don't know what to do with this info since the neuro just wrote > it off as being nothing! I've always said there has to be something > wrong with me! I'm only 27 and I live in Minnesota if you have any > suggestions. Do I assume it's no big deal or do you think this is all > related? Is the report on the MRI a big deal? The thing that makes me > mad is that I can't even have another MRI now since I have a pacemaker > and had he seen this when I had the first one he could have done > further testing (knowing I was going to be getting a pacemaker)!!! > > Thanks for any help, suggestions, anything at all. > > Amy :-) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 The reason for the need for the pacemaker is the ablations have basically fried her sinus node. The sinus node regulates your heartrate. So her HR is too slow and the only solution is a pacemaker. I had mine but in at 22 due to SIck Sinus Syndrome, yes chiari was partly to blame, but i am successfully decompressed and fused down to C6 but am back to using it 50% of the time. Just because you have chiari does not mean you can not have unconnected heart problems and it is very important to get any heart problems checked out, no matter how old you are. Your cardiologist needs to be aware of chiari however. One important note, if a pacer is being recommended make sure you see an electrophysiologist, not just a cardiologist. EP's specialize in the electrical pathways of the heart, they can do an ep study, which i assume you have had done at some point if you have had ablations. Re: New Here Hi there I'd be very suspicious that your heart issues and other problems may be from the CHiari, it would be so unlikely for a 27 year old with an otherwise structurally normal heart to need a pacemaker, right? I think young women get ignored easily in medicine and a lot of neurologist don't pay much attnetion to Chiari and easily ignore it. I would try another neurologist or neurosurgeon that might have CHiari experience. MN should have good doctors. I think Dr. Iskander in Wisconsin has a good reputation and is not too far or maybe Mayo clinic? I didn't have luck at Mayo clinic with my tethered cord, they just could not even consider it as an option in an adult but for some people it might be a great place to go. The WACMA website also has doctors that members have recommended. Best wishes A > > Hi everyone! I am new here and just looking for some suggestions after > a discovery on an MRI and reading about chiari. > > I have suffered for a long time from debilitating migraines and have > seen specialist after specialist. I am currently seeing someone who is > supposed to be one of the " best " but is one of those who doesn't make > you feel very good after seeing them. After a recent terrible one that > wouldn't go away and a hospital stay and trying to figure out " what to > do with me, " he happened to pull up my MRI results from January on his > computer. He just said " ah, that was normal " but I happened to see > something on there about chiari malformation and when I asked he just > blew it off! So I called my regular clinic and asked them to fax me > the report and found that it says: > > " of incidental note, the cerebellar tonsils extend approximately 5 mm > through the foramen magnum, which represents a Chiari 1 malformation, > of doubtful clinical significance. " > > I start looking this up online and find that I have had a heck of a > lot of things that seem to go along with this! Back in junior high I > was diagnosed with CFS, I have neurally mediated hypotention and > failed the tilt table test miserably! I had sinus tachycardia and had > two ablations with left me with too slow of a pace needing a > pacemaker. I've recently been in with leg pain (which the doc gave me > pain meds and said it's nothing). And the list goes on! > > I just don't know what to do with this info since the neuro just wrote > it off as being nothing! I've always said there has to be something > wrong with me! I'm only 27 and I live in Minnesota if you have any > suggestions. Do I assume it's no big deal or do you think this is all > related? Is the report on the MRI a big deal? The thing that makes me > mad is that I can't even have another MRI now since I have a pacemaker > and had he seen this when I had the first one he could have done > further testing (knowing I was going to be getting a pacemaker)!!! > > Thanks for any help, suggestions, anything at all. > > Amy :-) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 Whoops i didnt read the whole initial email before responding. Didnt realize you already have a pacemaker. They can still do a CT myelogram, they can use 2D reconstruction and see if flow is obstructed. With chiari that is the big telltell sign. You can have a large herniation but still have enough room for your spinal fluid to flow, then things just have to be monitored. You can also have a small herniation and extremely blocked flow. I would recommend getting a CT myelogram done, it's not a comfortable test, but the answers are worth it. Re: New Here Hi there I'd be very suspicious that your heart issues and other problems may be from the CHiari, it would be so unlikely for a 27 year old with an otherwise structurally normal heart to need a pacemaker, right? I think young women get ignored easily in medicine and a lot of neurologist don't pay much attnetion to Chiari and easily ignore it. I would try another neurologist or neurosurgeon that might have CHiari experience. MN should have good doctors. I think Dr. Iskander in Wisconsin has a good reputation and is not too far or maybe Mayo clinic? I didn't have luck at Mayo clinic with my tethered cord, they just could not even consider it as an option in an adult but for some people it might be a great place to go. The WACMA website also has doctors that members have recommended. Best wishes A > > Hi everyone! I am new here and just looking for some suggestions after > a discovery on an MRI and reading about chiari. > > I have suffered for a long time from debilitating migraines and have > seen specialist after specialist. I am currently seeing someone who is > supposed to be one of the " best " but is one of those who doesn't make > you feel very good after seeing them. After a recent terrible one that > wouldn't go away and a hospital stay and trying to figure out " what to > do with me, " he happened to pull up my MRI results from January on his > computer. He just said " ah, that was normal " but I happened to see > something on there about chiari malformation and when I asked he just > blew it off! So I called my regular clinic and asked them to fax me > the report and found that it says: > > " of incidental note, the cerebellar tonsils extend approximately 5 mm > through the foramen magnum, which represents a Chiari 1 malformation, > of doubtful clinical significance. " > > I start looking this up online and find that I have had a heck of a > lot of things that seem to go along with this! Back in junior high I > was diagnosed with CFS, I have neurally mediated hypotention and > failed the tilt table test miserably! I had sinus tachycardia and had > two ablations with left me with too slow of a pace needing a > pacemaker. I've recently been in with leg pain (which the doc gave me > pain meds and said it's nothing). And the list goes on! > > I just don't know what to do with this info since the neuro just wrote > it off as being nothing! I've always said there has to be something > wrong with me! I'm only 27 and I live in Minnesota if you have any > suggestions. Do I assume it's no big deal or do you think this is all > related? Is the report on the MRI a big deal? The thing that makes me > mad is that I can't even have another MRI now since I have a pacemaker > and had he seen this when I had the first one he could have done > further testing (knowing I was going to be getting a pacemaker)!!! > > Thanks for any help, suggestions, anything at all. > > Amy :-) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Well, by finding this website and listserv, you are going to get better informaotin than you had before. But, the search to find a doctor that knows Chiari and it relation to symptoms is sometimes difficult. My first MRI also noted " lower than normal cerebellar tonsils " but it was over 8 years and probably 10 doctors who saw it, before someone knew what it meant and that it related to my many symptoms, including debillitating migraines. I even knew about Chiari, from doing research, before finding a doctor who knew anything about it. Check the CCI website for names of doctors near you, or start looking into which ones you could travel to visit. It is worth it to take the time and expense to see a doctor that you know KNOWS about Chiari rather than to run the gauntlet trying to convince docs who don't know. Hope you find the help you need, H --- Amy wrote: > I have suffered for a long time from debilitating > migraines and have seen specialist after > specialist. > MRI results said ... > " of incidental note, the cerebellar tonsils extend > approximately 5 mm > through the foramen magnum, which represents a > Chiari 1 malformation, > of doubtful clinical significance. " > ________________________________________________________________________________\ ____ Check out the hottest 2008 models today at Yahoo! Autos. http://autos.yahoo.com/new_cars.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2008 Report Share Posted July 9, 2008 I have had similar issues with my son, he is 10 now. It all started when he was 2. I had the same worries then that you do now, docs just passed over my concerns. Now, 8 years later he has issues from He*l! I wish I would have demanded him be checked out better back them. Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE, Food Allergies (elimination diet: rye, wheat, soy, and beef), Env. Allergies to mountain cedar and cats, allergic conjunctivitis, and possible GBS (Guillian Barre Syndrome). New here Hi Everyone. I joined this group last year when my 3 yr old dd was put on miralax, but never really posted. When my dd was 2 she started having major bowel issues. She would only go once a week and they would be huge, hard poops. She would cry, bleed and most of the time the poop would get stuck on the way out. Well, we've been dealing with this for 2 years now. We've tried everything, including the miralax. We found that on the miralax she would still grunt to pass a tiny, mushy poop and did this like every hour. So we stopped giving it to her and tried laxatives. We've even tried an enema but she was too impacted and it just wouldn't go. So my question is could something structually be wrong with her. She's very small, 24 lbs and will be 4 in less than a month. She doesn't look unhealthy, looks like a very healthy 2 year old. She also has congenital scoliosis. I am sick of asking her dr because he tends to blow us off and her GI just recommends the miralax. Any suggestions? ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Push to retest the TSH, free T3 and free T4 soon. Hopefully, that will confirm the original results one way or the other for you. From: dianeemtaol (DOT) com <dianeemtaol (DOT) com>Subject: new hereTo: Thyroiditis@ yahoogroups. comDate: Thursday, March 26, 2009, 3:11 PM Hi Everyone, I was diagnosed with Hashi`s a couple of weeks ago and I was pretty shocked about it. It was found during a routine blood test done by my Chiropractor. Of course once I received the news from him, I went straight my MD who told me I just had a low thyroid. He said we just need to observe it for now and I`ll have another blood test done on April 10th. Here`s my numbers: TSH: 5.358 (normal range for this particular lab: 0.450-4.500) - this one is High Thyroxine (T4) Free, Direct S T4, Free (Direct): 1.52 (normal range:0.61-1. 76)- this one is Normal Thyroid Peroxidase (TPO) AB: 38 (normal range: 0-34)- this one is High Triiodothyronine, Free Serum: 2.9 (normal range: 2.3-4.2)- this is Normal My calcium and iron levels are perfectly normal. I hope everyone is doing well today. Diane visit my web store at: http://www.youravon .com/dalderson visit my web store at: http://www.youravon .com/dalderson Check all of your email inboxes from anywhere on the web. Try the new Email Toolbar now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 I am a big pusher when it comes to keeping ALL copies of your labs, any radiology results and the like. I make a note on the pages of the doseage of medications I am on at each point in time. Very helpful. le Subject: Re: new hereTo: Thyroiditis Date: Friday, March 27, 2009, 1:30 PM Thank you for this information le. My doctor has diagnosed me with "auto-immune thyroiditis" - not specifically Hashimoto's - by lab test and "feeling" nodules in my thyroid. Have yet to have my ultrasound! Am on Levoxyl, having increased me to 100mcg from nothing over a 6 week period. At this point, I think I'm looking forward to my ultrasound results!!While he gave me no other specific suggestions, having discussed this with my accupuncturist, have put myself on a gluten free diet. Have started losing weight and have a better over all mood level. Don't have my labl numbers, getting copies of my labs is one of my priorities now.Candace>> Hi Diane,> > Do you have any hypothyroid symptoms? Your lab results can not tell if you have Hasimoto's. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.