Aa
Haven't been diagnosed going to KU medical center in Kansas
Hi Everyone
I am new to the forum and have so many questions because I read the symptoms and I have some but not all. Was wanting to just feel people out on what you thought.
First off, I am a 31 years old. I was born totally deaf in my right ear, rare eye disease called Reis Bucklers Corneal Dystrophy that has caused me to become legally blind but my right eye is worse then my left, my tibia bone in my right leg never fully formed when I was younger. I had my first headache when I was eight years old by the time I was 12 I was suffering from migraines all the time. When I had my first daughter they had problems with the epidural and had to stick me eight times to get it. Three days later I went back to the hospital for a blood patch because I had a migraine for 3 days. I had another daughter and everyting was fine that time. By the time I was 21 I had to have a hysterectomy due to endometriosis. We all thought my headaches and migraines would go away after that but not so lucky for me they were still there. As I have gotten older the headaches, migraines and neck pain have gotten worse. Most of my head problems are right above my right eye, every once in a while I will have pain on my left side of my head. I have horrible neck pain all the time and the dr. put me on muscle relaxers and they haven't worked at all. I have had 3 CT's of my brain, all normal, and 2 MRI's one of brain and one of brain and partial neck, all normal. I have seen two nuro's one told me to stop drinking caffeine because it was causing rebound headaches. He did no tests at all. The second one I see last year put me through some pushing pulling, walking, tests and said that everything was normal there to. He basically wanted to just get me out of his office because as soon as he looked at my med chart he assumed i was a "druggy". My family dr. started prescribing me narcotics to help with the pain and it did help at first and then my body built up a tolerance to them and he kept upping my dose and now I am on some really strong stuff that they give to cancer patients that are dying. So if I ever do figure out what is going on I am going to have to go to a drug rehab clinic to get off this crud. The dr. also decided to put me on Lyrica just in case I have fibro. I have one good ear left and I have ringing in it all the time, I am always tired but I can't sleep because I have insomnia, I am always fatigued after doing a short project and then it seems like days before I can get my head and neck pain to calm down to where I am not in tears all day. I have bowel troubles and anytime I try to go I get this horrible pain in my head. Almost like someone stabbing me and it takes several minutes for it to go away. I am so that I am forgetting some things but this should give you a good idea of what is going on. Oh, forgot to say that 2 years ago is when everything started getting really bad to where I am in bed almost daily. I was thrown from a horse and knocked unconcious and lost 3 days of memory. It is going to sound funny but I was watching an episode of "House" and he diagnosed a patient with Chiari and that made my start looking at it. House pulled the patients head and neck very easy and asked if it eased the headache and it did. So my husband and I tried it and it was quite scary because when he did it I passed out and started shaking a bit. Any help or answers, or suggestions is greatly appreciated.
Thank you
Jennifer B from Kansas
I am new to the forum and have so many questions because I read the symptoms and I have some but not all. Was wanting to just feel people out on what you thought.
First off, I am a 31 years old. I was born totally deaf in my right ear, rare eye disease called Reis Bucklers Corneal Dystrophy that has caused me to become legally blind but my right eye is worse then my left, my tibia bone in my right leg never fully formed when I was younger. I had my first headache when I was eight years old by the time I was 12 I was suffering from migraines all the time. When I had my first daughter they had problems with the epidural and had to stick me eight times to get it. Three days later I went back to the hospital for a blood patch because I had a migraine for 3 days. I had another daughter and everyting was fine that time. By the time I was 21 I had to have a hysterectomy due to endometriosis. We all thought my headaches and migraines would go away after that but not so lucky for me they were still there. As I have gotten older the headaches, migraines and neck pain have gotten worse. Most of my head problems are right above my right eye, every once in a while I will have pain on my left side of my head. I have horrible neck pain all the time and the dr. put me on muscle relaxers and they haven't worked at all. I have had 3 CT's of my brain, all normal, and 2 MRI's one of brain and one of brain and partial neck, all normal. I have seen two nuro's one told me to stop drinking caffeine because it was causing rebound headaches. He did no tests at all. The second one I see last year put me through some pushing pulling, walking, tests and said that everything was normal there to. He basically wanted to just get me out of his office because as soon as he looked at my med chart he assumed i was a "druggy". My family dr. started prescribing me narcotics to help with the pain and it did help at first and then my body built up a tolerance to them and he kept upping my dose and now I am on some really strong stuff that they give to cancer patients that are dying. So if I ever do figure out what is going on I am going to have to go to a drug rehab clinic to get off this crud. The dr. also decided to put me on Lyrica just in case I have fibro. I have one good ear left and I have ringing in it all the time, I am always tired but I can't sleep because I have insomnia, I am always fatigued after doing a short project and then it seems like days before I can get my head and neck pain to calm down to where I am not in tears all day. I have bowel troubles and anytime I try to go I get this horrible pain in my head. Almost like someone stabbing me and it takes several minutes for it to go away. I am so that I am forgetting some things but this should give you a good idea of what is going on. Oh, forgot to say that 2 years ago is when everything started getting really bad to where I am in bed almost daily. I was thrown from a horse and knocked unconcious and lost 3 days of memory. It is going to sound funny but I was watching an episode of "House" and he diagnosed a patient with Chiari and that made my start looking at it. House pulled the patients head and neck very easy and asked if it eased the headache and it did. So my husband and I tried it and it was quite scary because when he did it I passed out and started shaking a bit. Any help or answers, or suggestions is greatly appreciated.
Thank you
Jennifer B from Kansas
COMMUNITY LEADER
Hi...the dr that was posting on here was not a chiari dr, and may not be the best to ask chiari questions....there is not a way to contact the dr directly.
I would suggest u be careful in posting MRI's as they have personal info on them..try using photo shop to block out ur info.
There r several Chiari drs that will review ur MRI disks...some charge a nominal fee, while others do it for free.
We do have a thread of drs and do suggest u research all drs b4 u see them..the list is not a recommendation, but a place to start looking.
Many of us r in the same financial situation....try fund raising to help offset the expense of this surgery and or treatments.
"selma"
I would suggest u be careful in posting MRI's as they have personal info on them..try using photo shop to block out ur info.
There r several Chiari drs that will review ur MRI disks...some charge a nominal fee, while others do it for free.
We do have a thread of drs and do suggest u research all drs b4 u see them..the list is not a recommendation, but a place to start looking.
Many of us r in the same financial situation....try fund raising to help offset the expense of this surgery and or treatments.
"selma"
Hello again
Today is one of those days that I consider to be a good day where I am not just in agonizing pain and just try to stay as relaxed as possible. I will work on trying to get my MRI"s uploaded so if someone can look at them and just let me know what you think I would sure appreciate it. Has anyone here ever been able to send the MRI's to a CM Dr. before they went to get an idea as to if they think I should make the trip. Our biggest problem right now is my husband has been laid off for almost two years so money is very tight. He has always had a great job but because of the rural area we live in it is very hard to find work right now w/o having to travel more then 50 miles on way to get to work. I know that no one here is a medical professional but I thought you guys would have a better idea on what you are looking at compared to me.
Today is one of those days that I consider to be a good day where I am not just in agonizing pain and just try to stay as relaxed as possible. I will work on trying to get my MRI"s uploaded so if someone can look at them and just let me know what you think I would sure appreciate it. Has anyone here ever been able to send the MRI's to a CM Dr. before they went to get an idea as to if they think I should make the trip. Our biggest problem right now is my husband has been laid off for almost two years so money is very tight. He has always had a great job but because of the rural area we live in it is very hard to find work right now w/o having to travel more then 50 miles on way to get to work. I know that no one here is a medical professional but I thought you guys would have a better idea on what you are looking at compared to me.
Because of a lack of understanding of the complexity of Chiari it is often dismissed as not a problem by some doctors, this makes it important that you find a doctor who knows CM and is up to date with the latest thinking on this condition. Many doctors will have a vague knowledge of CM, some will never have heard of it and others will claim they are experts, so you need to research witch doctor you chose.
You can upload your MRI scans to your profile as you would pictures.
Ray
You can upload your MRI scans to your profile as you would pictures.
Ray
Hi
Selma I thought I was the only one that was going out of my mind on wondering why my pain meds don't seem to work very well. The more I am reading the more symptoms I have that I didn't think were even relevant. I have my MRI"s with me on a disk and was wondering if I could post it on here, If so what picture do I need to get and how do I post it. My husband also came across this site the other night and came up and was all excited. He has been readig more then I have because I just can't get out of bed most days. It seems like when I can finally get to a point were the pain is bearable I want o get up and try to do things and then it just makes the pain fire up even more. I have also seen that there is a Dr. that posts on here, can't remember the name, but can you contact him/her, and they will respond? My biggest problem is I haven't been able to find a Dr. here in Kansas that is familar with Chiari and I can't afford to travel a long ways only to find out that someone is going to spend 15 minutes with me and send me on my way. That has happened so many times before. I forgot to mention in my previous posts that I seen a pain management Dr. earlier this year and all he wanted to do was give me facet joint injections. I told him after the third visit that the injections he was giving me were helping at all and he told me to come back in another two weeks and we would try injections in a different area of the neck and base of the skull. Needless to say, I didn't schedule another appointment because I felt like he was going to keep doing the same thing with no results.
I can't get an appointment with Kansas University Medical Center until the 9th of November. There are many days when I think I can't make it that long, but the more and more I read the more I understand that I am no alone with these problems. My hubby looked at my MRI based on some other posts and said it sure does look like the MRI's that were posted only not as severe. I am trying not to get my hopes up with anything because everytime I do I end up getting let down by another Dr. that just thinks I am surfing for more pills. If I do get an answer I know I have a long road ahead of me just coming off all the pain meds they have me on. I told me husband I don't think I will be able to do it on my own without medical supervision because of the withdrawl symptoms.
If anyone can let me know if I can post my MRI's and how I would sure appreciate it.
Thank you
Jennifer
Selma I thought I was the only one that was going out of my mind on wondering why my pain meds don't seem to work very well. The more I am reading the more symptoms I have that I didn't think were even relevant. I have my MRI"s with me on a disk and was wondering if I could post it on here, If so what picture do I need to get and how do I post it. My husband also came across this site the other night and came up and was all excited. He has been readig more then I have because I just can't get out of bed most days. It seems like when I can finally get to a point were the pain is bearable I want o get up and try to do things and then it just makes the pain fire up even more. I have also seen that there is a Dr. that posts on here, can't remember the name, but can you contact him/her, and they will respond? My biggest problem is I haven't been able to find a Dr. here in Kansas that is familar with Chiari and I can't afford to travel a long ways only to find out that someone is going to spend 15 minutes with me and send me on my way. That has happened so many times before. I forgot to mention in my previous posts that I seen a pain management Dr. earlier this year and all he wanted to do was give me facet joint injections. I told him after the third visit that the injections he was giving me were helping at all and he told me to come back in another two weeks and we would try injections in a different area of the neck and base of the skull. Needless to say, I didn't schedule another appointment because I felt like he was going to keep doing the same thing with no results.
I can't get an appointment with Kansas University Medical Center until the 9th of November. There are many days when I think I can't make it that long, but the more and more I read the more I understand that I am no alone with these problems. My hubby looked at my MRI based on some other posts and said it sure does look like the MRI's that were posted only not as severe. I am trying not to get my hopes up with anything because everytime I do I end up getting let down by another Dr. that just thinks I am surfing for more pills. If I do get an answer I know I have a long road ahead of me just coming off all the pain meds they have me on. I told me husband I don't think I will be able to do it on my own without medical supervision because of the withdrawl symptoms.
If anyone can let me know if I can post my MRI's and how I would sure appreciate it.
Thank you
Jennifer
Hi Jennifer,
You made be interested in my recent post. Further down I've listed my symptoms. http://www.medhelp.org/posts/Chiari-Malformation/Newly-diagnosed-and-desperate/show/1324252
I think we have some things in common. I'm about to have a hysterectomy, on 21st September, for endometriosis and adenomyosis. My migraines have sometimes been attributed to the menstrual problems, but now I know better as I have just been diagnosed with Chiari 1.
I know what you are going through with the high doses of pain meds and not being taken seriously by doctors. It's a long, hard road to travel.
Will you be seeing a neurologist soon? Please be careful with that precious neck of yours! Amy
You made be interested in my recent post. Further down I've listed my symptoms. http://www.medhelp.org/posts/Chiari-Malformation/Newly-diagnosed-and-desperate/show/1324252
I think we have some things in common. I'm about to have a hysterectomy, on 21st September, for endometriosis and adenomyosis. My migraines have sometimes been attributed to the menstrual problems, but now I know better as I have just been diagnosed with Chiari 1.
I know what you are going through with the high doses of pain meds and not being taken seriously by doctors. It's a long, hard road to travel.
Will you be seeing a neurologist soon? Please be careful with that precious neck of yours! Amy
COMMUNITY LEADER
It can be just as diff with things that r not as apparent even in a big city....I call the being passed around and getting skeptical ...the royal chiari run around.....we all seem to go thru it .
Not only are pain pills not a way u would like, most do not touch a chiari HA...so u have pain and u r loopy...not good....
LOL...good, no chiropractors either....
no worries
"selma"
Not only are pain pills not a way u would like, most do not touch a chiari HA...so u have pain and u r loopy...not good....
LOL...good, no chiropractors either....
no worries
"selma"
Hi
I did request copies of my MRI's and CT's the other day and they sent them home with me. Thank you for the link and I will make sure to check it out. You are right with the HOUSE episode, in it did give me something to start with. So far Chiari is the closest thing to match all of my sypmtoms. We live in a very rural area so for most of the Dr.s around here if something isn't very apparent they don't know what to do. All I know is sometimes I feel like I am going to lose my mind because it seems that there is no relief in sight. Because I have been tossed around from Dr. to Dr. and then pain specialist I am becoming very skeptical about going anymore, but I know I can't keep living the way I have been. They only thing my current Dr. is doing is throwing more and more pain pills my way and this is not the way I want to live my life and high doses of med's. Again, Thank you so much and I will continue to do more reading and no more pulling on the neck.
Thanks
Jennifer
I did request copies of my MRI's and CT's the other day and they sent them home with me. Thank you for the link and I will make sure to check it out. You are right with the HOUSE episode, in it did give me something to start with. So far Chiari is the closest thing to match all of my sypmtoms. We live in a very rural area so for most of the Dr.s around here if something isn't very apparent they don't know what to do. All I know is sometimes I feel like I am going to lose my mind because it seems that there is no relief in sight. Because I have been tossed around from Dr. to Dr. and then pain specialist I am becoming very skeptical about going anymore, but I know I can't keep living the way I have been. They only thing my current Dr. is doing is throwing more and more pain pills my way and this is not the way I want to live my life and high doses of med's. Again, Thank you so much and I will continue to do more reading and no more pulling on the neck.
Thanks
Jennifer
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Please do not attempt to pull on ur neck, if u do have chiari leave it to the drs and only a chiari specialist....it may do more harm than good, and unfortunately that HOUSE episode was not a good indication of how chiari is relieved....no pulling on my head would have helped.
I am glad that that episode at least gave u the name chiari to research if nething else.
I would suggest u get copies of all the MRI's CT scans and blood work...get reports and all the films on disk....u will need to see if ur brain MRI's r "normal" or if the drs felt chiari was an insignificant finding as many do.
Going forward, always request copies of all testing, this makes it easier to get a 2nd opinion.
The fall from the horse is enuff to cause a syrinx to form...so u deff should have more MRI's of the rest of ur spine to be sure u r not dealing with that issue.
We do have a list of drs here, I would suggest using that as a starting point for ur research for a dr that is right for u.http://www.medhelp.org/health_pages/list?cid=186
We r happy to have u join our little family, not happy for the circumstances that had u seek us out.
"selma"
Please do not attempt to pull on ur neck, if u do have chiari leave it to the drs and only a chiari specialist....it may do more harm than good, and unfortunately that HOUSE episode was not a good indication of how chiari is relieved....no pulling on my head would have helped.
I am glad that that episode at least gave u the name chiari to research if nething else.
I would suggest u get copies of all the MRI's CT scans and blood work...get reports and all the films on disk....u will need to see if ur brain MRI's r "normal" or if the drs felt chiari was an insignificant finding as many do.
Going forward, always request copies of all testing, this makes it easier to get a 2nd opinion.
The fall from the horse is enuff to cause a syrinx to form...so u deff should have more MRI's of the rest of ur spine to be sure u r not dealing with that issue.
We do have a list of drs here, I would suggest using that as a starting point for ur research for a dr that is right for u.http://www.medhelp.org/health_pages/list?cid=186
We r happy to have u join our little family, not happy for the circumstances that had u seek us out.
"selma"
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