Chiari Malformation - Online Support Group
We are patients and survivors of Chiari (types I-IV), here for your support.
This is gross I know but I have to ask!
Replies to This Discussion
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Permalink Reply by Jessie Noel on
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LOL! I love this site more then Facebook. My husband said I was going nuts about my constant ear cleaning. Had to clean them or spend the day rubbing ears. So I am glad to hear others feel this way. As for the question "Why must they find something else wrong with us?", I believe they feel better thinking our problems are simple things they understand. My mom and husband both worry when I have a Chiari headache- they both said they would feel better if I had a more normal problem. Something they can relate to.
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Permalink Reply by Diane John Jr Oliver on
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I have found myself on here more than Facebook too lol! As for the ear thing...I first explained like my brain was swishing around in my head n I was leaking water...yea, everyone thought I was over the edge then! It happens, it seems everything I thought was really odd about myself is Chiari related, I just choose to ignore most of it till the debilitating headaches came along. I agree with the finding something that's normal, my daughter n I were talking about it and she said "momma gma just wants to b in control like always n she has no control over Chiari so she's making up something she can help u with!" she needs to b needed and with Chiari she can't do a thing. My daughter is right about my mom but everyone else...who knows?! But yea, everyone on here has helped me regain some sanity for sure, I'm so grateful!
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Wow the first paragraph is me exactly! I know I can't live this way and it kills my family to see me this way bc I'm normally an active person n love to laugh. So far the diuretic has been life changing as well. My headaches still come but nothing like before I can at least be somewhat productive in a days time where as before I basically took my pain meds n laid in my recliner...it sucks! U know tht tho! The last few months my symtpoms have been worse, the twitching n vision makes things difficult but I prayed. For less headaches so I'm blessed. I am already on antidepressant n anxiety, have been for three years and would love to get off tht too! 5 years ago I didn't take Tylenol now I have like 7 differ prescriptions...I like what ur dr said about not living with all the meds n just having surgery, I have decided if someone will ever listen, I will have it. Can I asked about the area u live n ur dr, I live in Iowa we have Dr Menesez n he told me what ur first did. He hasn't done a cine test tho n I heard that's more accurate when it comes to the flow. Anyways thank u so much n I will keep u updated! Hope ur night is a good one!
zipped2010 said:I hate to hear you are receiving what most of us receive from doctors until we hit the right person and they Truly listen and KNOW what Chiari is really all about. I tried to talk my doctor into letting me take the diuretic instead of surgery but he was afraid of kidney problems and he felt the surgery would be worth it. The first NS did not want to do surgery, he felt it was a 50/50 chance and the surgery was too serious and if I could find a way to treat myself with meds than I should. He was basing his opinion from the CS flow test and the fact my Chiari was only 5mm. But me and my husband knew there was no way I could live my life this way.
The NS offered a second opinion with someone in his same practice but at a different location, we accepted and it was life changing. The new NS did a clinical exam and wanted to do the CT with contrast. The diuretic he tried was the kicker. It made my head feel better and that was golden for me. I could concentrate better, I could think without closing my eyes. I don't know of any other test to check CS flow. I do know mine was in the normal range (low end of it). If the diuretic helps your head that is a good sign the surgery will because the way the Ns described it, it decreased the amount of Spinal fluid which in returned helped the headaches. Tell your Chiari doc about the diuretic helping with the headaches, hopefully that will light a bulb in his head!!!! The surgery is no piece of cake and I don't know the extent of your condition with Chiari but for me it was life changing.
I know the surgery isn't for everyone so I don't want to push it on anyone. I was on an antidepressant for several months before my surgery. My neurologist put me on it to help with the headaches until we could get answers from a NS. It is an old medication that was introduced to help depression but it is used now for headaches. It did help me most days to be able to get out of the bed and function, it was called nortriptyline. Only side effect: weight gain in the legs (but I could handle that in exchange for the pain).He also did nerve blockers in my head twice, but now help there. Hope this helps. Please keep me posted on your progress.
Diane John Jr Oliver said:Zipped2010,
Thank u for ur insight! It's funny tht u posted tht bc I started taking a diuretic last week bc I was so swollen my fingers n feet hurt anyway I could tell When i need to stop taking them bc if I take them when I'm back to normal I get leg cramps bad n I'm still swollen but not near as bad. I've noticed over the week end tht my headaches are a ton better! I still have the other side effects but my head is to the point where I can function with a lot less pain medicine. I'm still taking a diuretic everyday and honestly now I'm affraid to stop! I prayed everyday for months if I could just have less of headache I would deal with the other symptoms.
Ps...my blood pressure is normally low and the last few months it's been higher so after reading these posts I had my mom who's a nurse come over and take my blood pressure...it was 96/62 and my pulse was back to 61! I believe this is bc of less fluid build up, u think?
So my question to u is first off...am I understanding u right tht if diuretic helps, chances of surgery helping are improved? Second...my ns who is our Chiari specialist said my according to my MRI my flow is fine and he would not do surgery, he called it chronic migraines, so how do I get someone to understand what I'm saying?
Are the other tests to determine flow? Is there anyway to figure out what it took surgery for ur dr to figure out? No one put me on diuretics, it was an old prescription.
Sorry to bombard u lol but I really feel I'm onto something...just not sure what!
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ModeratorPermalink Reply by TracyZ on -
Please keep us update on how you are doing. I also have ear wax issues. I thought it was just me. I think all abnormalities are Chiari related. It's seems never ending at times.
Well Wishes,
Tracy
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Katie, I just had a regular MRI n he told me he saw plenty of fluid in my brain n my Chiari is only 4.3mm so that's not even Chiari! Made my family think I was nuts! I know how I feel n honestly the ppl on here have been the most helpful, my headache came on n just kept getting worse to the point where I could do nothing but sit in my recliner. It sux so I'm hopeful someone somewhere will take this seriously! Anyways thanks u n I hope u get to feeling better soon!
Katie Gleaves said:Was your MRI a standard MRI or was it's a CFS? Because they can NOT in any way see if the flow is restricted unless the CSF flow study is done. Trust me I got the same news from my first ns office. Oh boy were they wrong. My chiari was only a 5 so should not have been restricting flow. But I had very minimum flow on the interior going to my brain and absolutely no flow in the posterior ( out bound) flow.
Fight for your rights!
Diane John Jr Oliver said:Zipped2010, Thank u for ur insight! It's funny tht u posted tht bc I started taking a diuretic last week bc I was so swollen my fingers n feet hurt anyway I could tell When i need to stop taking them bc if I take them when I'm back to normal I get leg cramps bad n I'm still swollen but not near as bad. I've noticed over the week end tht my headaches are a ton better! I still have the other side effects but my head is to the point where I can function with a lot less pain medicine. I'm still taking a diuretic everyday and honestly now I'm affraid to stop! I prayed everyday for months if I could just have less of headache I would deal with the other symptoms. Ps...my blood pressure is normally low and the last few months it's been higher so after reading these posts I had my mom who's a nurse come over and take my blood pressure...it was 96/62 and my pulse was back to 61! I believe this is bc of less fluid build up, u think?
So my question to u is first off...am I understanding u right tht if diuretic helps, chances of surgery helping are improved? Second...my ns who is our Chiari specialist said my according to my MRI my flow is fine and he would not do surgery, he called it chronic migraines, so how do I get someone to understand what I'm saying?
Are the other tests to determine flow? Is there anyway to figure out what it took surgery for ur dr to figure out? No one put me on diuretics, it was an old prescription.
Sorry to bombard u lol but I really feel I'm onto something...just not sure what!
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Katie, I hope ur day is going better. I just don't get y we have to fight so bad for our own health, it's crazy! I don't even know where to go from here, I believe I need a Cine MRI but I know they don't do tht at our hospital and the ns in Iowa City said I'm fine so what to do?? Where did u begin ur struggle and how did u get someone to believe u? I feel like I'm just wasting money with tests tht drs won't take seriously! And we're pretty strapped right now anyway with me not working so I'm just really confused on what to do. I do hope u find some relief soon!
Katie Gleaves said:They said that about mine too. It's only 5mm so it's not able to cut off flow!! I now have a CSF flow that proves otherwise. Now it took a whole year of jumping through hoops and all sorts of meds with no help and bad side affects. My short term memory and my ability ro count change is gone for good thanks to topamax.
Fight for the CSF flow study. They can not tell you with a regular ct and MRI whether it's blocking flow or not.
I had to quit my job I was in so much pain. Unfortunately my operation and recovery hasn't been wonderful but it's still not as bad as before surgery.
Ns's office has f*ed up and not gotten home health out today. My mom was able to get some sterile roll gauze and help do a fresh pack this evening. Good god I wish it was in a spot where it didn't hurt so stinking bad. That crap hurts like a mutha!!
Will continue fighting with the office tomorrow
Diane John Jr Oliver said:Katie, I just had a regular MRI n he told me he saw plenty of fluid in my brain n my Chiari is only 4.3mm so that's not even Chiari! Made my family think I was nuts! I know how I feel n honestly the ppl on here have been the most helpful, my headache came on n just kept getting worse to the point where I could do nothing but sit in my recliner. It sux so I'm hopeful someone somewhere will take this seriously! Anyways thanks u n I hope u get to feeling better soon!
Katie Gleaves said:Was your MRI a standard MRI or was it's a CFS? Because they can NOT in any way see if the flow is restricted unless the CSF flow study is done. Trust me I got the same news from my first ns office. Oh boy were they wrong. My chiari was only a 5 so should not have been restricting flow. But I had very minimum flow on the interior going to my brain and absolutely no flow in the posterior ( out bound) flow.
Fight for your rights!
Diane John Jr Oliver said:Zipped2010, Thank u for ur insight! It's funny tht u posted tht bc I started taking a diuretic last week bc I was so swollen my fingers n feet hurt anyway I could tell When i need to stop taking them bc if I take them when I'm back to normal I get leg cramps bad n I'm still swollen but not near as bad. I've noticed over the week end tht my headaches are a ton better! I still have the other side effects but my head is to the point where I can function with a lot less pain medicine. I'm still taking a diuretic everyday and honestly now I'm affraid to stop! I prayed everyday for months if I could just have less of headache I would deal with the other symptoms. Ps...my blood pressure is normally low and the last few months it's been higher so after reading these posts I had my mom who's a nurse come over and take my blood pressure...it was 96/62 and my pulse was back to 61! I believe this is bc of less fluid build up, u think?
So my question to u is first off...am I understanding u right tht if diuretic helps, chances of surgery helping are improved? Second...my ns who is our Chiari specialist said my according to my MRI my flow is fine and he would not do surgery, he called it chronic migraines, so how do I get someone to understand what I'm saying?
Are the other tests to determine flow? Is there anyway to figure out what it took surgery for ur dr to figure out? No one put me on diuretics, it was an old prescription.
Sorry to bombard u lol but I really feel I'm onto something...just not sure what!
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Permalink Reply by zipped2010 on -
I am in NC and my NS is Dr Martin Henegar in Charlotte NC. He is a great doctor/surgeon. My pastor's grandaughter who is 16 wsa diagnosed in Nov. with Chiari and she had her surgery with him too and the surgery went well. THe muscle relaxers she had side effects from but she is gaining strength each day. I wish you lived closer and you could see him, you don't have to have a referral to see him and his nurses work hard to work people in and help. I hope you find a NS or doctor who will dig deeper and not just label you and go on. Please don't give up hope. I was diagnosed in Aug 2009 and didn't find my NS until Feb 2010 after 2 Neurologist and several MRI's and x-rays from my head to Tail bone! I even saw a cervial care doctor who is like a chiropractor (which I have never been to before) but they only tweek the one bone in the neck, easy and simple but kind of expensive because my insurance wouldn't pay, but it helped with the pressure alot, he lined up my head with my neck with a simple nudge and 30 minutes of rest in a certain position. Look one up in your area, it may help you at least til you find a NS with REAL ears!
Please keep me posted, I will be praying for you Diane and your family because I know it is hard on them too.
Diane John Jr Oliver said:Wow the first paragraph is me exactly! I know I can't live this way and it kills my family to see me this way bc I'm normally an active person n love to laugh. So far the diuretic has been life changing as well. My headaches still come but nothing like before I can at least be somewhat productive in a days time where as before I basically took my pain meds n laid in my recliner...it sucks! U know tht tho! The last few months my symtpoms have been worse, the twitching n vision makes things difficult but I prayed. For less headaches so I'm blessed. I am already on antidepressant n anxiety, have been for three years and would love to get off tht too! 5 years ago I didn't take Tylenol now I have like 7 differ prescriptions...I like what ur dr said about not living with all the meds n just having surgery, I have decided if someone will ever listen, I will have it. Can I asked about the area u live n ur dr, I live in Iowa we have Dr Menesez n he told me what ur first did. He hasn't done a cine test tho n I heard that's more accurate when it comes to the flow. Anyways thank u so much n I will keep u updated! Hope ur night is a good one!
zipped2010 said:I hate to hear you are receiving what most of us receive from doctors until we hit the right person and they Truly listen and KNOW what Chiari is really all about. I tried to talk my doctor into letting me take the diuretic instead of surgery but he was afraid of kidney problems and he felt the surgery would be worth it. The first NS did not want to do surgery, he felt it was a 50/50 chance and the surgery was too serious and if I could find a way to treat myself with meds than I should. He was basing his opinion from the CS flow test and the fact my Chiari was only 5mm. But me and my husband knew there was no way I could live my life this way.
The NS offered a second opinion with someone in his same practice but at a different location, we accepted and it was life changing. The new NS did a clinical exam and wanted to do the CT with contrast. The diuretic he tried was the kicker. It made my head feel better and that was golden for me. I could concentrate better, I could think without closing my eyes. I don't know of any other test to check CS flow. I do know mine was in the normal range (low end of it). If the diuretic helps your head that is a good sign the surgery will because the way the Ns described it, it decreased the amount of Spinal fluid which in returned helped the headaches. Tell your Chiari doc about the diuretic helping with the headaches, hopefully that will light a bulb in his head!!!! The surgery is no piece of cake and I don't know the extent of your condition with Chiari but for me it was life changing.
I know the surgery isn't for everyone so I don't want to push it on anyone. I was on an antidepressant for several months before my surgery. My neurologist put me on it to help with the headaches until we could get answers from a NS. It is an old medication that was introduced to help depression but it is used now for headaches. It did help me most days to be able to get out of the bed and function, it was called nortriptyline. Only side effect: weight gain in the legs (but I could handle that in exchange for the pain).He also did nerve blockers in my head twice, but now help there. Hope this helps. Please keep me posted on your progress.
Diane John Jr Oliver said:Zipped2010,
Thank u for ur insight! It's funny tht u posted tht bc I started taking a diuretic last week bc I was so swollen my fingers n feet hurt anyway I could tell When i need to stop taking them bc if I take them when I'm back to normal I get leg cramps bad n I'm still swollen but not near as bad. I've noticed over the week end tht my headaches are a ton better! I still have the other side effects but my head is to the point where I can function with a lot less pain medicine. I'm still taking a diuretic everyday and honestly now I'm affraid to stop! I prayed everyday for months if I could just have less of headache I would deal with the other symptoms.
Ps...my blood pressure is normally low and the last few months it's been higher so after reading these posts I had my mom who's a nurse come over and take my blood pressure...it was 96/62 and my pulse was back to 61! I believe this is bc of less fluid build up, u think?
So my question to u is first off...am I understanding u right tht if diuretic helps, chances of surgery helping are improved? Second...my ns who is our Chiari specialist said my according to my MRI my flow is fine and he would not do surgery, he called it chronic migraines, so how do I get someone to understand what I'm saying?
Are the other tests to determine flow? Is there anyway to figure out what it took surgery for ur dr to figure out? No one put me on diuretics, it was an old prescription.
Sorry to bombard u lol but I really feel I'm onto something...just not sure what!
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Permalink Reply by Bill Zern on -
If you have an MRI showing that you have Chiari Malformation, a doctor's confirmation, a radiologist report also confirming this.... I mean that's it, why on earth would your mother think it's anything else!?
Diane John Jr Oliver said:But my mom thinking its chemical n that's what's wrong with me is a lil out there ya know what I mean?.! Lol y not just accept I have Chiari? I don't get y so many ppl just don't get us?
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Permalink Reply by Christine on -
OMG Bill, that so happens to me!!! I thought I was just OCD about my ears. They always feel clogged and they have a muffley feeling to them. Yes, that's my made up word "muffley" lol.
Twitch saId:LOL. Bill, you're quickly becoming my favorite person on this website. Eating bananas....LMFAO. I have people all the time that say, have you tried Excedrin for your headaches? Or, have you checked your blood sugar lately? It's all I can do to keep from hurting someone.
I realized the day before yesterday that I was Q-Tipping my ears 8 or 9 times a day. It felt like they were full of wax. It took me a couple of days to realize that I didn't have wax in my ears. It's the goddamned Chiari. Now, it feels like I have my fingers in my ears 24/7. The pressure is so great, it's making my throat tickle.
Is there anything that this condition DOESN'T cause?
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ModeratorPermalink Reply by lori on -
Hi Diane...
Chiari causes so many symptoms!!!! I too have belly issues ..more now than before surgery. I am suppose to be taking Magace to 'enhance my appetite' b/c I lost quite a bit of weight.
Like Bill mentioned and Twitch , too , I think.....There isn't much Chiari cannot cause!
Hope you are doing better...mine waxes and wanes.
Lori
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Thank you tht means a lot, it hard on the family! N I wish I could c ur dr! It's so frustrating to know there's someone tht could do it if he just knew more about Chiari! But since I haven't had the cine MRI I think I will ask for one of those when I go to the nl because those diuretic pills helped for like 4 days, my headache came back strong this morning bout 3 but those were the best days I had in months! I'll just keep praying and thank u again, stay in touch!
zipped2010 said:I am in NC and my NS is Dr Martin Henegar in Charlotte NC. He is a great doctor/surgeon. My pastor's grandaughter who is 16 wsa diagnosed in Nov. with Chiari and she had her surgery with him too and the surgery went well. THe muscle relaxers she had side effects from but she is gaining strength each day. I wish you lived closer and you could see him, you don't have to have a referral to see him and his nurses work hard to work people in and help. I hope you find a NS or doctor who will dig deeper and not just label you and go on. Please don't give up hope. I was diagnosed in Aug 2009 and didn't find my NS until Feb 2010 after 2 Neurologist and several MRI's and x-rays from my head to Tail bone! I even saw a cervial care doctor who is like a chiropractor (which I have never been to before) but they only tweek the one bone in the neck, easy and simple but kind of expensive because my insurance wouldn't pay, but it helped with the pressure alot, he lined up my head with my neck with a simple nudge and 30 minutes of rest in a certain position. Look one up in your area, it may help you at least til you find a NS with REAL ears!
Please keep me posted, I will be praying for you Diane and your family because I know it is hard on them too.
Diane John Jr Oliver said:Wow the first paragraph is me exactly! I know I can't live this way and it kills my family to see me this way bc I'm normally an active person n love to laugh. So far the diuretic has been life changing as well. My headaches still come but nothing like before I can at least be somewhat productive in a days time where as before I basically took my pain meds n laid in my recliner...it sucks! U know tht tho! The last few months my symtpoms have been worse, the twitching n vision makes things difficult but I prayed. For less headaches so I'm blessed. I am already on antidepressant n anxiety, have been for three years and would love to get off tht too! 5 years ago I didn't take Tylenol now I have like 7 differ prescriptions...I like what ur dr said about not living with all the meds n just having surgery, I have decided if someone will ever listen, I will have it. Can I asked about the area u live n ur dr, I live in Iowa we have Dr Menesez n he told me what ur first did. He hasn't done a cine test tho n I heard that's more accurate when it comes to the flow. Anyways thank u so much n I will keep u updated! Hope ur night is a good one!
zipped2010 said:I hate to hear you are receiving what most of us receive from doctors until we hit the right person and they Truly listen and KNOW what Chiari is really all about. I tried to talk my doctor into letting me take the diuretic instead of surgery but he was afraid of kidney problems and he felt the surgery would be worth it. The first NS did not want to do surgery, he felt it was a 50/50 chance and the surgery was too serious and if I could find a way to treat myself with meds than I should. He was basing his opinion from the CS flow test and the fact my Chiari was only 5mm. But me and my husband knew there was no way I could live my life this way.
The NS offered a second opinion with someone in his same practice but at a different location, we accepted and it was life changing. The new NS did a clinical exam and wanted to do the CT with contrast. The diuretic he tried was the kicker. It made my head feel better and that was golden for me. I could concentrate better, I could think without closing my eyes. I don't know of any other test to check CS flow. I do know mine was in the normal range (low end of it). If the diuretic helps your head that is a good sign the surgery will because the way the Ns described it, it decreased the amount of Spinal fluid which in returned helped the headaches. Tell your Chiari doc about the diuretic helping with the headaches, hopefully that will light a bulb in his head!!!! The surgery is no piece of cake and I don't know the extent of your condition with Chiari but for me it was life changing.
I know the surgery isn't for everyone so I don't want to push it on anyone. I was on an antidepressant for several months before my surgery. My neurologist put me on it to help with the headaches until we could get answers from a NS. It is an old medication that was introduced to help depression but it is used now for headaches. It did help me most days to be able to get out of the bed and function, it was called nortriptyline. Only side effect: weight gain in the legs (but I could handle that in exchange for the pain).He also did nerve blockers in my head twice, but now help there. Hope this helps. Please keep me posted on your progress.
Diane John Jr Oliver said:Zipped2010,
Thank u for ur insight! It's funny tht u posted tht bc I started taking a diuretic last week bc I was so swollen my fingers n feet hurt anyway I could tell When i need to stop taking them bc if I take them when I'm back to normal I get leg cramps bad n I'm still swollen but not near as bad. I've noticed over the week end tht my headaches are a ton better! I still have the other side effects but my head is to the point where I can function with a lot less pain medicine. I'm still taking a diuretic everyday and honestly now I'm affraid to stop! I prayed everyday for months if I could just have less of headache I would deal with the other symptoms.
Ps...my blood pressure is normally low and the last few months it's been higher so after reading these posts I had my mom who's a nurse come over and take my blood pressure...it was 96/62 and my pulse was back to 61! I believe this is bc of less fluid build up, u think?
So my question to u is first off...am I understanding u right tht if diuretic helps, chances of surgery helping are improved? Second...my ns who is our Chiari specialist said my according to my MRI my flow is fine and he would not do surgery, he called it chronic migraines, so how do I get someone to understand what I'm saying?
Are the other tests to determine flow? Is there anyway to figure out what it took surgery for ur dr to figure out? No one put me on diuretics, it was an old prescription.
Sorry to bombard u lol but I really feel I'm onto something...just not sure what!
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Permalink Reply by Bill Zern on
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If anyone is more curious about Cine MRI, this video may be helpful
I'm not sure about the date of this video but it is currently found on The Chiari Instsitute site... I mean I don't know if Cine MRI technology has improved since this video.
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