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My Chiari Story


I was diagnosed with Chiari Malformation type1 in 1999 aged 19. I had suffered with headaches for a number of years before my diagnosis which were considered to be migraines, my Mum also has Chiari but we were told as 'Chiari isn't hereditary' there was no chance I would have it, a CT scan to rule out other conditions showed otherwise.

I have had periods throughout my adulthood where I have been unable to work due to my symptoms but until recently they have always subsided and I have been able to continue with normal day to day activities. During 2007 my symptoms took a turn for the worse, I began to notice when I didn't have a headache as more often than not, I did. I would get brief but severe stabbing pains in my head and I was having to wear a scarf everyday, even indoors as the slightest change in temperature would set the pain off. I often used to work away from home and would have to take another bag with me just to accommodate all the pain relief aids I needed to have with me to get me through the week. By April 2008 I was no longer able to work, I suddenly had a whole new set of symptoms that I was unable to control with painkillers, over the last year or so I have continued to have new symptoms to the point where I now experience a mixture of the following:

headaches, eye pain, widespread muscle & joint pain, numbness & tingling in my arms and legs, 'electric shock' sensations, visual disturbances, hearing cut outs, difficulty driving, nausea, dizziness, over-sensitive hearing, sleep disturbances, chronic fatigue, brain 'fog' word finding/spelling difficulties, and pseudo tumor like episodes which can be extremely frightening.

My symptoms tend to work on a cycle, I will go through periods of insomnia followed by being unable to keep my eyes open for days on end, sometimes my headaches will take over then subside for a time whilst my muscle pain takes its turn. At times I will feel relatively 'normal' for a while then I'll get a sudden onset of a range of symptoms all at once.

I have a small herniation so there is some disagreement over whether my symptoms are caused by the Chiari, since my diagnosis I have seen a neurosurgeon every year and had a follow up MRI every five years 'to keep an eye on things'. My first neurosurgeon said he didn't want to operate 'just for the headaches' but said that there was nothing I could do myself to control them, he retired as my symptoms increased at which point I was assigned another surgeon. The second surgeon felt that I would benefit from decompression surgery and put me on the waiting list, whilst I was on the list he requested I see a neurologist to check that there was nothing else going on. The neurologist suggested I could manage my symptoms with a change of lifestyle, exercise, diet etc... After following his orders, attempting to exercise and only making my symptoms worse my Dr suggested I stop.
At this point I saw a third neurosurgeon, to cut waiting times the hospital had assigned me to someone else who was working another clinic, he felt that my symptoms were not Chiari related at all and that I suffer from migraines, although he couldn't account for all of my symptoms. When I asked if I could have a cine MRI, a test that would show if there is a blockage of CSF, I was asked what it was and what that had to do with my condition. I was told that it was 'obvious from my MRI that there was no blockage' and I didn't require further tests.

I have now been removed from the waiting list for decompression surgery, it seems I have Chiari and strikingly similar symptoms to other Chiarians but as my herniation is small I am now being treated for fibromyalgia, migraines and neuralgia, all of which my Drs have said could be caused by Chiari but without definitive answers they are now working on treating the symptoms rather than the cause.

Cymraes79 Cymraes79 26-30, F 9 Responses Sep 24, 2009

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Try dr heffez milwakee chiari center he has done extensive research that even if small surgery can help i am schedled for may. I dont know where you are located but angelflight.org mine was angelflightcentral.org flew me there for free. There is also a house called kathys house you can stay in for a donation nightly. They are both wonderfull and might be able to help you.

at times i cry because the pain in my head made it to my deformed body, i'm now experiencing muscle atrophy, tremors spasms hand spasms. i can actually feel the tendons in my fingers raise up and become stiff. the damage it's done is incredible, diagnosed with epilepsy at the age of four. I know your pain and i feel for you.! god bless, and take care my friend.

I am a Canadian but went to the U.S. to get an assessment of my Chiari 1. The neurosurgeon had looked at one of my previous MRIs and said it was Chiari 1. I agreed to an appt to find out if my symptoms were consistent with Chiari and whether I might benefit from surgery. <br />
He said that the correct assessment for Chiari 1 is the amount of compression of the brain stem at the level of the foramen magnum (which is the opening at the bottom of the skull). The length of the cerebrallar tonsil herniation doesn't matter as much as the crowding created by the cerebellar tonsils at the level of the foramen magnum. The axial image (which shows the horizontal slice at which point the brain stem enters the spinal canal) should show the brain stem unimpeded by other structures. In the case of Chiari 1, it shows the tonsils sharing the space and pushing again the brain stem. <br />
The autonomic nervous system fibres run through the brain stem, hence the affect on digestion, eyesight, muscles, etc.<br />
My herniation was 5 mm but he said even less of a herniation could cause the same problem if it crowded the brain stem at the foramen magnum. (The way I understand this is that tonsils may be longer but narrower and therefore cause less compression.)<br />
My neurologist in Canada said that they would not even consider Chiari 1 unless the tonsil herniation was 10 mm. Clearly there is a disconnect in the understanding of this malformation, among doctors in both Canada and the U.S.<br />
I share a lot of the symptoms you discuss here especially the headaches, numbness, muscle pain, and eye issues. <br />
I'm hoping to go ahead with the surgery but am waiting to hear about the costs associated with surgery and a hospital stay in the U.S.

Check with dr heffez milwakee wisconsin chiari cntr. You can talk to billing about the cost. Also look up angelflight.org im not sure they go out of states but are free if you qualify also tbere is kathys house where you can stay for a donation also you are allowed to take someone witb you for the fligbt sorry for the typos im tired and have not had surgery yet but i got the important stuff right. God bless

Rukhsana. chiari 1 malformation.and cervical syrinx diagnosed. Feb 2011.<br />
<br />
In August of 2010 I had symptoms of pin and needles in my feet which led to numbness, loss of feeling, and extensive pain in my calves. I visited my GP and underwent several blood test and was told as the test were normal that it was more likely to be a viral illness. I suffered severly until October 2010 when the syptoms eased. I returned to work but in January 2011 the symptoms returned with devastating effect. Not only were my feet and calves affected but it had transgressed into my hands. I returned to my GP, but this time saw another doctor who again carried out all the relevant blood tests. Again these were normal but he did refer me to a neurologist specialist. I saw Dr Hansen who through his diligence and thoroughness sent me for a MRI scan and EEG (electrogram) to establish any issues within the nervous system. Although the EEG was clear as it could only measure major nerve systems and not the smaller nerves which relate to sensory function and which are are repairable in most cases when damaged. However the MRI did show something and I was recalled for a further MRI In April 2011. This scan was far more intrusive in the sense that half way through the procedure, dye was injected into my arm to intensify the imaging. I was notified by Dr Hansen that I did in fact have cervical syrinx which measured 5cm in length and 5mm in diameter. This was located in spinal cord of the brain stem. He immediatley referred me to the Neurosurgeon at Leeds General Infirmary. Whilst waiting for an appointment My symptoms degenerated to the point of debilitation. The symptoms progressed into my forearms which caused anthropy during sleep which disturbed my sleep up to six or seven times a night. The pain intensified and the ever increasing numbness and pain due to temperature change intensified furhter. Other symptoms included sensitivity to temperature, difficulty in walking and handling, intense pain at the back of my neck, headaches and chronic fatigue. In May 2011, I saw my Neurosurgeon who informed me at the first appointment the I did in fact have a Chiari 1 Malformation as well as a Cervical Syrinx, which he stated was the primary cause of the syrinx. This was bad news as it added to the complexity of the previous diagonosis. THe Neurosurgeon however, was satisfied even jubilent as he considerd surgery for the Chiari was preferable for me than surgery for the syrinx. The reason for this given was that he believed that the Chiari may well be the cause of the syrinx due to blockage of the CFC fluid passing down from my skull through my spine. <br />
The Neurosurgeon informed me that the symptoms I had were considered to be in the latter stages and that the damage that had been caused was likely to be be permanent. It was expected that the symptoms I had may reduce but there was a possibility that the sensory depravation would remain. However the Neurosurgeon was hopeful that after the decompression procedure the syrinx would drain and prevent further damage to my spinal cord.<br />
<br />
I underwent decompression surgery on 20th June 2011, and left hospital on 22nd June 2011. Makeno mistake that this is a very serious operation but I give thanks to Mr Thomson, Roddie (registrar) and their team for the success of the surgery. Although it is not a normal period of time in hospital, most may well be incapacitated for much longer. Due to being positive and determined I am well on the way to recovery. There have been issues relating to medication for pain relief, sickness due to the volume of different medications needed to control the pain during recovery, but I would like to say that 17 days into my recovery I am sat here now sharing my experience and can tell you that although I still suffer from mild pain due to the operation, my other syptoms have reduced considerably. I can honestly say that although the thought of brain surgery and the risks associated with these procedures are terrifying I am glad that I underwent the surgery. As I am still recovering I do not know the extent of success at this time but I am confident that this is another success story. <br />
I hope my story will help others and support people who unfortunately find themselves with this condition.

i too am having chiari symptoms. I have a shunt for hydrocephalus, and had a revision on the shunt last april. Test show shunt is working and that isn't the cause of my symptoms. I have had several CT done since symptoms began in January 2011. we went to the cleveland clinic last week, and they said i am dealing with migraines.. which I don't think is the case.. im vomiting evertime something is jput in my stomach, food or drink, have diarrhea, muscle stiffness, and extreme soreness, twitching, fatigue dizziness, foggy brain, balance issues, nausea, weakness in entire body, numbness on left side of body, sleep several hours but still feel exhausted like i haven't slept at all... neck, back and shoulder pain, and extreme severe headache that never goes away... i am going to a nurologist in Cincinatti soon, i just have to wait to hear from them

I too have had symptoms all my life and bad pains in the ba<x>se of my neck. I just recently discovered that this might be the cause of all my problems. Doctors kept saying I was overweight but the I had the pains before I was overweight. I get dizziness, nausea, migraines, and other weird pains that come and go. I moved to a different city last year and the doctors are so much nicer and better hear. I found a chiro that uses a gun to scan your nerve compression and found out that not only is my spine crooked but I have terrible nerve compression almost the whole length of my spine. He is sending me to do a mri or cat scan of my brain. I think u should find another doctor that is more knowledgeable or go to a spine institute. That doctor doesn't seem like he knows what he is talking about. U can also find a chiro that specializes in spinal manipulation and does the nerve scan. I also read that there is a chiari-0 where the is no noticeable intrusion into the spine but patients still have all the signs. U can pull it up on google to read about it.<br />
Good luck.<br />
april

Hi,<br />
Just going back on line. I use to post on ASAP.org. The most knowledgeable person<br />
in the US bar none I do believe is or was Sarah in Paradise(California) and she<br />
emphasizes the most important thing-Only go to a truly or she says A True Chiari Specialist<br />
I wholeheartedly agree. If you have to travel - do it. Go To TCI on long Island new york or to ASAP.org recognized neurosurgeons in your area. I contacted Dr.Menezes in Iowa City, Iowa for a referral <br />
I had very successful surgery and I do believe very careful removal of the adhesions I had formed (after 25 MISERABLE years undiagnosed!) made a very big difference in the success of my surgery.<br />
Patschneider

I can also relate....I was sent to the Neurosurgeon due to the back problems that I have had for years and years. I also had migraines for years and years. My headaches were also related alot to the weather....I had a hysterectomy about six years ago due to the headaches as well as other female related issues.<br />
<br />
Much like you, I've seen soooo many doctors, had so many trips to the Emergency Room etc. I've also had doctors tell me that even my pain does not match my test results and just give me more medicine that does not help and it's not migraines. I know what a migraine is....These are all symptoms that doctors can't make sense of.....They are not typically related....Unless, you have a Chiari Malformation, then it makes complete sense. I only have about 50 percent feeling in my legs, starting to get the numbness and tingling in my shoulders, arms and hands, have the ringing ears. Sight, sound and smell are severely sensitive, major muscle pain, major memory and brain fog, can't stand or walk straight if my life depended on it.....and lets not forget the nausea and other issues on top of that.....Someone please tell me that there is hope out there with this surgery....I'm scared that I will be one of the people who have such severe symptoms, I will get brain surgery, be in pain for a year just to have to have it all over again....???????

Hi,<br />
<br />
I just happened upon your story when Googling Chiari stories, not sure if you are still dealing with these issues or if you had the surgery or what.<br />
<br />
I can totally relate to so much you wrote (with your symptoms)<br />
I had the decompression surgery one year ago on Aug 19,09-- actually a month before you wrote this! <br />
<br />
It has made such a dramatic difference for me, I was extremely fortunate that my doctors were proactive and didn't put me through such a rollercoaster as you and many others have dealt with. I was diagnosed only one month before I had the surgery. I understand how frustrating it is to have doctors scratch their heads and tell you wait and see, because for years I had other symptoms that were probably related but never really pointed toward anything that would require an MRI.<br />
<br />
Too many doctors do not have any real experience with Chiari patients and they tend to chalk up our symptoms as everything BUT Chiari related. <br />
<br />
Anyway, I just wanted to let you know that others are out here and pulling for you-- and for more medical awareness of this condition!<br />
<br />
Wendy<br />
If you ever need someone to talk to about this, drop me an email : LG20626@comcast.net

i feel it too, it's terrible. many challenges.