My son, Josh, was 23 years old when diagnosed in Houston, TX with a what was considered a mild 5mm Chiari 1 Malformation. That was Sept 2003.

Since the age of 12 he had developed occassional hand tremors diagnosed by a neurologist as Epstein Benein Tremor. Not serious, and medication could be used when needed when he reached adulthood. It was during his teen years that he also began to experience black floaters in his eyes, but it wasn't that often.

The summer of 2003 he missed a lot of work due to nausea, vomiting, and headaches. I would call to check on him and he would slurr when talking. I became angry at him and accused him of partying too much during the week and not being responsible. I thought he was having hangovers. This was not the case. He assured me that wasn't the problem. It wasn't until Sept he suffered his first grand mal seizure at work and was rushed to the hospital. He was there a couple days for testing and observation. The doctors could find no real reason for the seizure and told us that he did have a mild Chiari 1 Malformation that did not contribute to his seizure. Josh, was then placed on dylantin.

Six weeks later Josh suffered his second grand mal seizure. Followed by multiple mini seizures for hours. He was kept overnight and released from the hospital the following morning. He was unable to walk. His legs hurt and he was weak. He had no insurance and I am sure that is why he was released without all the facts and more testing.

Unable to walk the following day I had no reason not to believe what the doctors told me that he would be weak after having so many mini seizures back to back. What we did not realize is that he had also developed fibromylasia and his legs were sensitive to touch and that pain made it difficult for him to stand. That afternoon he suffered his third grand mal seizure and once again rushed to the hospital. This time he was admitted and tested for nearly three weeks. Again, no answer for the onset of these recent seizures. Josh was still unable to walk. He could move his legs while laying in bed but did not have the strength to stand. As days passed his feet became heavy. He would sweat profusely just to lift one foot a couple inches into the air. He claimed his feet felt like they were in cement buckets. One doctor said that if he did not use his feet and walk he could lose the ability to ever walk again. He had physical therapy everyday in the hospital and for months after his release. He continued to have headaches that would radiate from the back of his head to the front behind his eyes. His legs were so sensitive that just touching them would send burning pain through them. This was my rebel child that had always had such a high tolerance to pain not afraid of getting hurt. Always enjoying life to the fullest. Now unable to walk, getting around in a wheelchair, and no answers for his problems. The seizures now controlled by his dylantin dosage. Without medical insurance there was little help for my son. As a Mom, I did not stop researching his symptoms and began researching Chiari. I was told a 5mm was not to be concerned with and had nothing to do with his inability to walk, his pain, or the seizures he had recently started having.

After months of research, I was fortunate enough to talk to a Dr. Jon Weinstein at John Hopkins Medical Center. He had spent years diagnosing and treating people from all over the world with his Chiari research. Dr. Weinstein informed me that it was not the size of the Chiari that mattered but the symptoms the patient had that required surgery. I was told that if my son did not have surgery and have surgery soon that he would never walk again. He also informed me that there may be a link between chiari and seizures but further research needed to be done. Dr. Weinstein told me that most MRI's are done while the patient is laying down. He said that he bet if Josh had a standing MRI it would be discovered that his 5mm was really greater than that. I think he said that a CINE MRI was best for this test (at least in the year 2004). After months of fighting the red tape to get my son the medical treatment he deserved he was finally seen by doctors in Galveston at UTMB. He was admitted into the hospital and once again tested, probed, and seen by a couple psychologists to determine if the problem with his legs was all in his head. Here is a young 24 year old man, unable to walk or drive, had his girlfriend break off their relationship so she could move on with her life, forced to move back home, unable to work, and doctors think he has chosen to live this miserable lifestyle! Get real!

Finally, April 2004, Josh had his one and only decompression surgery. While he laid in the intensive care unit, pumped with morphine, he looked over at me and said that the pain in his legs was gone. I told him that he wouldn't know because he was so drugged. He looked at me and said again, no, it is gone! I know how my legs feel! He was released from the hospital after a couple days. The surgery went great. The pain in his legs was in fact, GONE! Josh started physical therapy about a week after surgery. Within six weeks my son was walking with crutches. In six more weeks he was able to walk with a cane.

Today, Nov 2008, Josh has few headaches. The black floaters in his eyes are gone. He has no pain in his legs. The nausea and vomiting stopped. No slurring his words. His hands still tremor on occassion but not to the degree that they once did. He did have another grand mal seizure two and half years ago. He continues to take his medicine for seizures and we pray that there will be no more. Yes, he does walk with a cane today. He is like a baby learning to walk. He can start across a room and go several feet without losing his balance, or start across the room and fall. He uses a cane to keep his balance. He said that he got tired of falling.
Such progress made from his months in a wheelchair. He changed a lot from what he experienced from the months he had to deal with his chiari symptoms. He has a wonderful job as a PC Technician, he has a different outlook on life, he understands people with disabilities, he is a young man full of determination and willpower. I am very proud of him!

I will sum this up by telling every family dealing with Chiari not to give up hope. There is still so much to learn from Chiari research. For many, the hardest part of this whole thing to deal with is misdiagnosis and doctors not willing to understand that EVERY patient varies from symptom to symptom. There may be one group that can be classed together with similar symptoms while many others may have less common symptoms therefore, confussing the diagnosis. I never gave up on my son and getting him the help that he needed. You would be amazed how good he can walk. People that don't know what he went through ask why he uses a cane. Unfortunately, many think the cane is something he uses to try to look Pimp. One night while out with friends someone stoled his cane and I believe it is because someone didn't believe he needed it.

Despite, the fact that he walks with a cane. The surgery was a huge success!

Thank you for sharing this courageous story! What a wonderful ending!
Prayers & hugs to you and your family,
Debbie

I'm glad to hear Josh is doing better, I understand totally what he went through, because I was treated for a Chairi I with surgery,and now after my Fourth surgery I'm trying to recover enough to return to work, and yes no one fully understands that you're dealing with the most complex and misunderstood part of the human body, so Josh , and Mom hang in there, hope to hear from you soon.

Thank you for posting this. We are looking for answers for our daughter. She is five years old and has been diagnosed with LGS, which is a severe form of epilepsy. In the last several months, we have seen some things in her that no one can explain and that really concern us. A lot of these symptoms look a lot like Chiari Malformation. She never has learned to talk. Sometimes her hands and feet will turn icy for days and she will eventually stop using them. During these times, she also stops eating and drinking, becomes constipated and sleeps for hours and hours every day. Even on her "good" days, she is a "noodle" and has serious balance problems.

I am curious about one thing regarding your son. You said he had some seizures that may or may not be related to his Chiari Malformation. Did you ever have an EEG record his seizures and if so, what did they look like? Bailey (our daughter) has a slow spike wave pattern consistant with LGS. We have a consultation with our neurologist on Dec 10 for a different surgery (CC) and would love to have more information on Chiari before then. Thank you,

Launa

That is so wonderful. I had the surg. to. I had a cane until a little after I had it. does your son experiance pain in the back of his head where they did it. Not like a headache. It's like my brain hurts..not throbbing, but shooting into my spine on top close in my head not all of it in neck. And I am not able to think clear for the past like month..Do you see him in ANY way having signs of the chiari again after the surg. I am wondering if i need to see my doc. again. or if I will have the pain for life. thank you
jane

hi my name is jodie i live in adelaide i am 30yrs old and was diagnosed with chiari 1 malformation about 5yrs ago how my life has changed since then, the pain is hard to describe to someone who doesnt hav the condition themselves at this stage ive had 2 head surgerys with no change at all in fact i am worse now then before surgery im a really angry person now i would really like to talk to someone with chiari 1 malformation maybe it might help me.
im really really happy for your son great to hear he is doing well my symptons are headaches,altered sensation down my left side cant grip things i drop alot of things feel like i hav extra limbs, hiccups (alot) i think the fact i am so angry is that no one understands they can say they do but infact they really dont

My sister is 19 years of age and four years ago was told she has between 13 to 24mm Arnold-Chiari Malformation. She suffers from Partial-Complex, Tonic Clonic and Absence seizures, black-outs, temporary paralysis, pins and needles in arms and legs, headaches, dizzy spells, metal taste in mouth, stuttering sometimes, neck pain, back pain and other symptoms..we cant find a doctor willing to operate and the hospitals in Brisbane will not help! Has anyone had a similar problem and if so can anyone refer a surgeon that will be able to help or try to help?

Unfortunately not a lot of doctors know about chiari and are much less well-versed in it. You are most likely going to have to travel to find one.


Also make sure to find out whether you have EDS (Ehlers Danlos Syndrome) it is seen alot in combo with Chiari. It can also cause CCI (cranio-cervical instability) due to the EDS and cause a lot of neurological issues too. Also be checked for POTS (Postural Orthostatic Tachycardia Syndrome) which goes along with this too. Also make sure they do a standing MRI to to check for CCI and an X-ray with your head tilted back as far as you can go and tucked to your chin to look for retroflexed ondontoid bone issues.

My son, Josh, was 23 years old when diagnosed in Houston, TX with a what was considered a mild 5mm Chiari 1 Malformation. That was Sept 2003.

Since the age of 12, he had developed occassional hand tremors and diagnosed by a neurologist as Epstein Benein Tremor. Not serious, and medication could be used when needed... when he reached adulthood. It was during his teen years that he also began to experience black floaters in his eyes, but it wasn't that often.

The summer of 2003, he missed a lot of work due to nausea, vomiting, and headaches. I would call to check on him and he would slur when talking. I became angry at him and accused him of partying too much during the week and not being responsible. I thought he was having hangovers. This was not the case. He assured me that wasn't the problem. It wasn't until Sept that he suffered his first grand mal seizure at work and was rushed to the hospital. He was there a couple days for testing and observation. The doctors could find no real reason for the seizure and told us that he did have a mild Chiari 1 Malformation and that did not contribute to his seizure. Josh, was then placed on dylantin.

Six weeks later, Josh suffered his second grand mal seizure. Followed by multiple mini seizures lasting for hours. He was kept overnight and released from the hospital the following morning. He was unable to walk. His legs hurt and he was weak. He had no insurance and I am sure that is why he was released without doctors additional testing.

Unable to walk the following day, I had no reason not to believe what the doctors told me... that he would be weak after having so many mini seizures back to back. What we did not realize at the time, is that he had also developed severe fibromylasia. His legs were sensitive to touch and the severe pain made it difficult for him to stand. That afternoon, he suffered his third grand mal seizure and once again rushed to the hospital. This time he was admitted for 3 weeks and received every kind of test this small Fort Bend County hospital had to offer. Again, no answer for the onset of these recent seizures. Josh was still unable to walk. He could move his legs while laying in bed but did not have the strength to stand. As days passed his feet became heavy. He would sweat profusely just to lift one foot a couple inches into the air. He claimed his feet felt like they were in cement buckets. One doctor said that if he did not use his feet and walk he would lose the ability to ever walk again. He had physical therapy everyday in the hospital and for months after his release. He continued to have headaches that would radiate from the back of his head to the front behind his eyes. His legs were so sensitive that just touching them would send burning pain through them. This was my rebel child that had always had such a high tolerance to pain not afraid of getting hurt. Always enjoying life to the fullest. Now unable to walk, getting around in a wheelchair, and no answers for his problems. The seizures now controlled by his dylantin dosage. Without medical insurance there was little help for my son. As a Mom, I did not stop researching his symptoms and Chiari. I was told a 5mm was not to be concerned with and had nothing to do with his inability to walk, his pain, or the seizures he had recently started having.

After months of research, I was fortunate enough to talk to a Dr. Jon Weinstein at John Hopkins Medical Center. He had spent years diagnosing and treating people from all over the world with his Chiari research. Dr. Weinstein informed me that it was not the size of the Chiari that mattered but the symptoms the patient had that required surgery. I was told that if my son did not have surgery and have surgery soon that he would never walk again. He also informed me that there may be a link between chiari and seizures but further research needed to be done. Dr. Weinstein told me that most MRI's are done while the patient is laying down. He said that he bet if Josh had a standing MRI it would be discovered that his 5mm was really greater than that. I think he said that a CINE MRI was best for this test (at least in the year 2004). Laying down doesn't show the full mm of the stem like it does when one is laying down. After months of fighting the red tape to get my son the medical treatment he deserved... he was finally seen by doctors in Galveston at UTMB. He was admitted into the hospital and once again tested, probed, and seen by a couple psychologists to determine if the problem with his legs was all in his head. Here is a young 24 year old man, unable to walk or drive, had his girlfriend break off their relationship so she could move on with her life, forced to move back home, unable to work, and doctors think he has chosen to live this miserable lifestyle! Get real!

Finally, April 2004, Josh had his one and only decompression surgery. While he laid in the intensive care unit, pumped with morphine, he looked over at me and said that the pain in his legs was gone. I told him that he wouldn't know because he was so drugged. He looked at me and said again, no, it is gone! I know how my legs feel! The surgery went great. The pain in his legs was in fact, GONE! Josh started physical therapy about a week after surgery. Within six weeks my son was walking with crutches. In six more weeks he was able to walk with a cane.

Today, Nov 2008, Josh has few headaches. The black floaters in his eyes are gone. He has no pain in his legs. The nausea and vomiting stopped. No slurring his words. His hands still tremor on occasion but not to the degree that they once did. He did have another grand mal seizure two and half years ago. He continues to take his medicine for seizures and we pray that there will be no more. Yes, he does walk with a cane today. He is like a baby learning to walk. He can start across a room and go several feet without losing his balance, or start across the room and fall. He uses a cane to keep his balance. He said he got tired of falling.
Such progress made from his months in a wheelchair. He changed a lot from what he experienced and from the months he had to deal with his chiari symptoms. He has a wonderful job as a PC Technician, he has a different outlook on life, he understands people with disabilities, he is a young man full of determination and willpower. I am very proud of him!

I will sum this up by telling every family dealing with Chiari not to give up hope. There is still so much to learn from Chiari research. For many, the hardest part of this whole thing to deal with is misdiagnosis and doctors not willing to understand that EVERY patient varies from symptom to symptom. There may be one group that can be classed together with similar symptoms while many others may have less common symptoms therefore, confusing the diagnosis. I never gave up on my son and getting him the help that he needed. You would be amazed how good he can walk. People that don't know what he went through ask why he uses a cane. Unfortunately, some idiots think the cane is something he has as part of a dress code.... One night while out with friends someone stoled his cane.... and I believe it is because someone didn't believe he needed perhaps for meanness or looking at the appearance of this handsome young man they didn't believe he needed it.

Despite, the fact that he walks with a cane. The surgery was a huge success!

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Apr 2019
UPDATE: 15 Years Later: Doctors told us Josh would be as far as he would at a 2 yr mark. This meant that if he was walking with a cane 2 yrs from date of surgery that he would most likely always use a cane to help with his balance. ONE DOCTOR told me that he had seen this kind of change to take up to 5 years. My son walked with a cane for 4.5 years! He was determined to get off of disability and move as much as possible...staying active made a HUGE difference! Today, he is a Project Manager with a Houston company that makes the pipes used by oil companies. He has recently started getting more headaches and complains of his legs bothering him ... and I hope this is from being on his feet at work on a hard concrete floor. I told him to make sure he wears the best shoes for comfort and in time we will see if these symptoms are work related or Chiari related.