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chiari stories
If anyone is interested. I am looking to get stories from others who suffer from Chiari Malformation. I am going to send them to Dr. Oz, and try and get him to do a show about Chiari and what we and our families go through. I want to send him a bunch of our stories and I am going to send them to The doctors show, and who ever else we can think of. I figured if I snail mail them a bunch at once, they may pay more attention to it then just an email.
Here is my personal email if you want to email me your story.
***@**** I plan on starting to send them out July 1st.
Here is my personal email if you want to email me your story.
***@**** I plan on starting to send them out July 1st.
What a great idea, I am thankful that you have thought of this!! I am new to this also, but would love to share if it's not too late. I am adding you as a friend now, please email me if I can give some input. Thanks!
I wish you all the best. Hopefully you get some help. Your symptoms sound almost like the ones I had. Still to this day no one believes me. Only Dr. Oro in Denver, Aurora. My family dr. says that the Syrinx does not cause any symptoms. Well, I now better!!!
What a fantastic idea. My name is Jen and when I was 18 I started having "dizzy spells" as my mom called them. With no warning I would fall to the floor and shake without even knowing I was doing it. I also suffered from severe headaches and fatigue. Doctors always passed it off as getting up too fast and stress. This has gone on all my life so it was something I have just dealt with, I am now 40 years old. In January of this year while crossing the street I was struck by a car. In march I couldn't take the headaches. I was taking so many vicadin during the day that I couldn't function and the "dizzy spells " increased sygnificantly. I had a scan done and found that I have chiari. I am so happy to know that I am not losing my mind and that there has always been a reason for my issues. I now will be going to a neurosurgeon on the 20th to discuss surgery.
This life altering disease needs to come out more so people can go in to a doctor armed with information. We should not have to live for years in agony.
This life altering disease needs to come out more so people can go in to a doctor armed with information. We should not have to live for years in agony.
Good Idea Debbie, in case you have not sent them in I will share my story. People freak out when I tell them about it.
I was treated years for depression, chronic fatigue, blood tests, stool samples all the time. I could not work out anymore and fine motor skills were terrible. I could not look down and type at work, it seemed like my hands did not want to work. I was severly dizzy. I had an M.R.I. and it came back "CHIARI MALFORMATION" on the film folder. My Dr. said get down to our neurosurgeon who operates on our children with this condition.My arms and legs were so tired all the time. I felt like I could collapse I went down to the Chicago Institute of Neurology and Neurosurgery. It was funny in a way, the surgeon had me come in and he pointed to my x-ray and said, "I knew right away, see your brain stem is slipping into your spinal cord. All we can do is remove a bit of bone from the back of the skull. This gives the brain more room to move around. You were born without a shelve at the back of the skull. I went with the surgery so that my spinal fluid would not have to fight with the condition.
I was treated years for depression, chronic fatigue, blood tests, stool samples all the time. I could not work out anymore and fine motor skills were terrible. I could not look down and type at work, it seemed like my hands did not want to work. I was severly dizzy. I had an M.R.I. and it came back "CHIARI MALFORMATION" on the film folder. My Dr. said get down to our neurosurgeon who operates on our children with this condition.My arms and legs were so tired all the time. I felt like I could collapse I went down to the Chicago Institute of Neurology and Neurosurgery. It was funny in a way, the surgeon had me come in and he pointed to my x-ray and said, "I knew right away, see your brain stem is slipping into your spinal cord. All we can do is remove a bit of bone from the back of the skull. This gives the brain more room to move around. You were born without a shelve at the back of the skull. I went with the surgery so that my spinal fluid would not have to fight with the condition.
My son has acm type 1 (decompressed at 6 months old), hydrocephalus (shunted at 5 months old), leukomalacia (brain damage), cortical visual impairment, cerebral palsy. He also has severe speech delay - he can only say 4 words. He is 3 1/2 years old and a twin. The twins are also TTTS survivors. I Would be happy to tell you his story. My email is ***@****. i cant see your email or i would contact you directly.
Hi, I also feel up to contributing if you would contact me.
Btw, 20/20 did a segment on Chiari in 2000; my firiend and my NS were in it.
Also, several years ago, there was an episode of Mystery Diagnosis (I think), in which the condition was Chiari; the kid in it died. ( I guessed it!)
If you want help writing a proposal, I can help w/ that-- I have some facts at my finger tips, like how many people are affected, women 3x as often as men, etc.
Btw, 20/20 did a segment on Chiari in 2000; my firiend and my NS were in it.
Also, several years ago, there was an episode of Mystery Diagnosis (I think), in which the condition was Chiari; the kid in it died. ( I guessed it!)
If you want help writing a proposal, I can help w/ that-- I have some facts at my finger tips, like how many people are affected, women 3x as often as men, etc.
Would you PM me or add as friend. I would love to share my journey, but I can't get to the website you adressed on here. Thanks.
Linda :)
Linda :)
hi,first of all..wow rae3342..your story is so amazing..x all i have to say seems so little..and not really chiari..my daughter has a syrinx t6-t11,9mm. she also has a muscle disease and other complications..although its probably of no help..i have just read over these posts and wanted to share
In June 2005, I had my Gallbladder removed and in August I had pneumonia. In October I was experiencing double vision, or a ghostly image. I went to the eye doctor to be examined and he referred me to a specialist. Specialist sent me to my regular family doctor to have a work up done and ordered blood work and MRI testing. MRI showed a small lesion. Family doctor suspected Multiple Sclerosis and I was sent to a neurologist. Neurologist who after lots of testing thought it maybe Multiple Sclerosis but thought it was probably just stress related. He prescribed me 10 mg of Lexapro and we started the wait and see game. My vision stabilized and I thought cool I’m good. Had an MRI done 6 months later and results showed no new evidence of anything and neurologist thought not MS, just stress. Try to go on with life and I will see you back every 6 months just to make sure it is not MS.
In 2006, I had pneumonia again and the eye symptoms returned. Lasted about a week and went away before I was even able to see neuro. Went to see my family doctor and he said he thinks I’m becoming too knowledgeable of a patient. I was very upset and thought that’s it, I’m giving up on doctors.
In August 2007, had pneumonia then in October my right leg went numb after sitting with my leg crossed while reading a book. I thought it was nothing to worry about so I just dealt with it. Leg stayed numb but in the morning the next day my leg was fine but my left arm bicep hurt. I thought I must have just slept funny. I was very happy that my leg was feeling better and I went on with my day. Throughout the day my arm really started to hurt really badly. My husband thought lets go to Urgent care to just see what’s going on. The doctor at Urgent care thought maybe it was shingles so he sent me home waiting to see if I broke out in a rash. That night my arm hurt so badly that I was crying. My husband said ok that’s it we are going to the ER. At the ER my arm became really heavy and numb. While I was waiting, I started to have this pressure around my chest like someone was hugging me really hard. I could hardly breathe and my back hurt so badly. I was admitted into the hospital and a new neurologist started doing tests on me. My arm stayed numb for 48 hours then it’s like it moved down to my left leg. It started with my thigh muscle hurting, my leg going numb and it felt really heavy. I could not walk that easily, I had to slide my foot along the floor. Leg was numb for about 48 hours also. Felt pins and needles all on left side of body. Also, felt like someone was cracking my head open and pouring hot and cold water down the left side of my body. This happened several times a day. After blood work and MRI and LP tests all came back all normal. I was released on the 5th day. I suffered a horrible headache on day 5 -7. On the 7th day my head was hurting so badly that I was throwing up. My hearing was messed up. I could hear the vehicles going by my house like they were right inside by my ear. I put headphone on and could still hear everything so loudly. My husband came home and brought me to the ER again. I was treated with Solu-Medrol and the next day I felt great. Nothing was wrong. MRI report showed unchanged mild left cerebellar tonsil ectopia. I had unchanged small focus of the frontal lobe. It is not enhanced. Neuro thought I do not have MS prescribed Gapapentin and thought I should go see a psychologist. He thought it was all in my head. I was upset but thought maybe if I don’t pay attention to my symptoms and I tried to ignore everything, I’ll feel better.. I thought maybe being a stay at home mom is stressing me out too much so a friend got me a job at the post office.
In 2008, 2009, had pneumonia again, had lots of fatigue and same feeling now and then in left leg/ left arm but I thought it was due to being a mail carrier. Symptoms came and went off and on lasting for a day or two. Also, I had bladder and memory problems. Changed to a third neurologist who finally thought something is definitely going on here and it is not stress or in psychological. Had MRI done every year and nothing new showed up. He said evidence of optical neurosis, and he was very suspicious of MS but thought it is a very mild case of it if it is it. He said only have a 20% chance of developing full MS.
In 2010, 2011, Started having really bad ear aches, ringing in my ears, stiff neck and neck pain, Headaches at the base of head, lightheaded, nausea, disequilibrium, balance issues, visual disturbances, muscle weakness only on left side, impaired fine motor skills, dropping things, chronic fatigue and painful tingling of the patch on back, face, hands and feet. I started tripping at work and falling, sprained ankle. I could not do my job at the post office any longer, it was just killing me. I was sleeping all the time and my body was hurting so badly. I thought I should try to find a desk type job, maybe I would feel better. After leaving the post Office I started feeling better and I thought that was it but then in the spring and fall I felt everything again. MRI in 2010 showed mild low cerebella tonsils, white matter on frontal lube that was not enhanced. I did not get a copy of this report so I had no idea. Neuro just said no changes see you in a year. I could not afford to get an MRI done in 2011.
In 2012, Fall same symptoms again. But now having memory word loss, start talking and the wrong words come out without me even realizing.( Husband just always corrects me.) I am having a stiff neck, swollen glands in neck, balance issues, eye and ear disturbances, and severe headaches in the back of my head down my neck and left shoulder. Had nerve testing and blood work. Everything came back normal but, vitamin D was low at 23. Prescribed me 5000 IU per day. Had MRI done but this time I got the report and had my neuro go over the finding with me. MRI of brain showed Stable small focus of increase T2 signal intensity left frontal sub cortical white matter with no enhancement. Stable borderline cerebellar tonsillar ectopia. Interval decrease in mild right mastoiditis and minimal chronic left maxillary sinus disease. Cervical MRI showed stable mild kyphosis C4-C%. Mild diffuse disc desiccation, mild disc bulging and uncovertebral joint spurring C3-4 through C6-7. There is scattered nodes throughout the neck. He thought really does not think I have MS and suggested I should go to an ENT. Went to see an ENT and they said ear look good. Said no acute mastoiditis thought it was just from ear infection from childhood. Ear problems are due to neurological issues. Nose issues need to do nasal lavages and was prescribed Nasonex. Thought the swelling in neck was my saliva glands swollen need to drink more water. Thought maybe nausea was caused by GERD and the dizziness was from my underlying neurological issues. He says do you have MS? I said neuro doesn’t think so that’s why I was sent here.
After feeling so hopeless I started researching about stable borderline cerebellar tonsillar ectopia and came across Chiari I malformation. I decided to send this letter to the Chiari Institute in New York City. They replied right away and asked me to send them my MRI’s and reports along with all the questionnaires completed. Well, Friday 6/8/2012 they called me and said I am a candidate to come to the Institute for testing. I think I am finally going to get an answer? My husband is on board 100%. I can’t wait.
In 2006, I had pneumonia again and the eye symptoms returned. Lasted about a week and went away before I was even able to see neuro. Went to see my family doctor and he said he thinks I’m becoming too knowledgeable of a patient. I was very upset and thought that’s it, I’m giving up on doctors.
In August 2007, had pneumonia then in October my right leg went numb after sitting with my leg crossed while reading a book. I thought it was nothing to worry about so I just dealt with it. Leg stayed numb but in the morning the next day my leg was fine but my left arm bicep hurt. I thought I must have just slept funny. I was very happy that my leg was feeling better and I went on with my day. Throughout the day my arm really started to hurt really badly. My husband thought lets go to Urgent care to just see what’s going on. The doctor at Urgent care thought maybe it was shingles so he sent me home waiting to see if I broke out in a rash. That night my arm hurt so badly that I was crying. My husband said ok that’s it we are going to the ER. At the ER my arm became really heavy and numb. While I was waiting, I started to have this pressure around my chest like someone was hugging me really hard. I could hardly breathe and my back hurt so badly. I was admitted into the hospital and a new neurologist started doing tests on me. My arm stayed numb for 48 hours then it’s like it moved down to my left leg. It started with my thigh muscle hurting, my leg going numb and it felt really heavy. I could not walk that easily, I had to slide my foot along the floor. Leg was numb for about 48 hours also. Felt pins and needles all on left side of body. Also, felt like someone was cracking my head open and pouring hot and cold water down the left side of my body. This happened several times a day. After blood work and MRI and LP tests all came back all normal. I was released on the 5th day. I suffered a horrible headache on day 5 -7. On the 7th day my head was hurting so badly that I was throwing up. My hearing was messed up. I could hear the vehicles going by my house like they were right inside by my ear. I put headphone on and could still hear everything so loudly. My husband came home and brought me to the ER again. I was treated with Solu-Medrol and the next day I felt great. Nothing was wrong. MRI report showed unchanged mild left cerebellar tonsil ectopia. I had unchanged small focus of the frontal lobe. It is not enhanced. Neuro thought I do not have MS prescribed Gapapentin and thought I should go see a psychologist. He thought it was all in my head. I was upset but thought maybe if I don’t pay attention to my symptoms and I tried to ignore everything, I’ll feel better.. I thought maybe being a stay at home mom is stressing me out too much so a friend got me a job at the post office.
In 2008, 2009, had pneumonia again, had lots of fatigue and same feeling now and then in left leg/ left arm but I thought it was due to being a mail carrier. Symptoms came and went off and on lasting for a day or two. Also, I had bladder and memory problems. Changed to a third neurologist who finally thought something is definitely going on here and it is not stress or in psychological. Had MRI done every year and nothing new showed up. He said evidence of optical neurosis, and he was very suspicious of MS but thought it is a very mild case of it if it is it. He said only have a 20% chance of developing full MS.
In 2010, 2011, Started having really bad ear aches, ringing in my ears, stiff neck and neck pain, Headaches at the base of head, lightheaded, nausea, disequilibrium, balance issues, visual disturbances, muscle weakness only on left side, impaired fine motor skills, dropping things, chronic fatigue and painful tingling of the patch on back, face, hands and feet. I started tripping at work and falling, sprained ankle. I could not do my job at the post office any longer, it was just killing me. I was sleeping all the time and my body was hurting so badly. I thought I should try to find a desk type job, maybe I would feel better. After leaving the post Office I started feeling better and I thought that was it but then in the spring and fall I felt everything again. MRI in 2010 showed mild low cerebella tonsils, white matter on frontal lube that was not enhanced. I did not get a copy of this report so I had no idea. Neuro just said no changes see you in a year. I could not afford to get an MRI done in 2011.
In 2012, Fall same symptoms again. But now having memory word loss, start talking and the wrong words come out without me even realizing.( Husband just always corrects me.) I am having a stiff neck, swollen glands in neck, balance issues, eye and ear disturbances, and severe headaches in the back of my head down my neck and left shoulder. Had nerve testing and blood work. Everything came back normal but, vitamin D was low at 23. Prescribed me 5000 IU per day. Had MRI done but this time I got the report and had my neuro go over the finding with me. MRI of brain showed Stable small focus of increase T2 signal intensity left frontal sub cortical white matter with no enhancement. Stable borderline cerebellar tonsillar ectopia. Interval decrease in mild right mastoiditis and minimal chronic left maxillary sinus disease. Cervical MRI showed stable mild kyphosis C4-C%. Mild diffuse disc desiccation, mild disc bulging and uncovertebral joint spurring C3-4 through C6-7. There is scattered nodes throughout the neck. He thought really does not think I have MS and suggested I should go to an ENT. Went to see an ENT and they said ear look good. Said no acute mastoiditis thought it was just from ear infection from childhood. Ear problems are due to neurological issues. Nose issues need to do nasal lavages and was prescribed Nasonex. Thought the swelling in neck was my saliva glands swollen need to drink more water. Thought maybe nausea was caused by GERD and the dizziness was from my underlying neurological issues. He says do you have MS? I said neuro doesn’t think so that’s why I was sent here.
After feeling so hopeless I started researching about stable borderline cerebellar tonsillar ectopia and came across Chiari I malformation. I decided to send this letter to the Chiari Institute in New York City. They replied right away and asked me to send them my MRI’s and reports along with all the questionnaires completed. Well, Friday 6/8/2012 they called me and said I am a candidate to come to the Institute for testing. I think I am finally going to get an answer? My husband is on board 100%. I can’t wait.
Not sure if this is too long. Also, I am a newbie to the Chiari world, in the process of being diagnosised.
Hello, my name is RaeAnne Pisa and since 2005 I have been suffering from something that the doctors are still searching for answers to.
My childhood besides having childhood anemia I was really a healthy kid. No broken bones, no big bad sicknesses. I did have very bad teeth due to being anemic. I had a really bad ear infection in high school and mono. In college my wisdom tooth became infected and I had to have it pulled. I had my head pushed into a brick wall and I suffered from a stiff neck with a really bad headache that lasted for 2 months.
In 1998, I had a very large cyst removed from my left ovary.
In August 2000, I delivered my son Cameron by C-section due to his size of 10.5 lbs.
In March 2004, I had my twin boys Devin and Vinny also by C-section, they were 7.5 lbs each. With this pregnancy I had Gestational Diabetes. After having the twins I had a really hard time loosing the weight that I gained, I am currently still over weight. No Diabetes, No high blood pressure, cholesterol is borderline high.
to be continued
Hello, my name is RaeAnne Pisa and since 2005 I have been suffering from something that the doctors are still searching for answers to.
My childhood besides having childhood anemia I was really a healthy kid. No broken bones, no big bad sicknesses. I did have very bad teeth due to being anemic. I had a really bad ear infection in high school and mono. In college my wisdom tooth became infected and I had to have it pulled. I had my head pushed into a brick wall and I suffered from a stiff neck with a really bad headache that lasted for 2 months.
In 1998, I had a very large cyst removed from my left ovary.
In August 2000, I delivered my son Cameron by C-section due to his size of 10.5 lbs.
In March 2004, I had my twin boys Devin and Vinny also by C-section, they were 7.5 lbs each. With this pregnancy I had Gestational Diabetes. After having the twins I had a really hard time loosing the weight that I gained, I am currently still over weight. No Diabetes, No high blood pressure, cholesterol is borderline high.
to be continued
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