Questions & comments 21

Chiari malformation (4)

Today will be my fourth and final post on Chiari malformation.

While it is generally believed that Chiari malformation occurs at birth, recent scientific research has shown that this condition, which may be asymptomatic, can become symptomatic due to trauma. Also, there is a body of literature that recognizes that Chiari malformation may become acquired as opposed to congenital.

The leading study on the effects of trauma and Chiari malformation was published by Thomas H. Milhorat, M.D. et al in a study of 364 symptomatic patients.3 In this study, 364 symptomatic patients were evaluated (275 female and 89 male). The study found that Chiari malformation I is a disorder of the para-axial mesoderm that is characterized by underdevelopment of the posterior cranial fossa and overcrowding of the normally developed hindbrain. Clinical manifestations of Chiari malformation I were related to cerebrospinal fluid disturbances which were responsible for headaches, pseudo tumor-like episodes, endolymphatic hydrops, syringomyelia, hydrocephalus and direct compression of nervous tissue.

In this study, 25 percent of the patients cited trauma as the precipitating factor. The most common mechanisms were whiplash injuries and direct blows to the head and neck, which raised the possibility that certain types of trauma accentuate tonsillar impaction or result in subarachanoid hemorrhage that destabilizes a marginally compensated CSF system.

Dr. Milhorat and his colleagues can be located at North Shore University Hospital in Manhasset, New York.

This study is increasingly important as patients with traumatically symptomatic Chiari I malformation have found it exceedingly difficult to obtain reimbursement from their automobile insurance companies and find it difficult, in attempting to obtain compensation, to convince adjusters, judges and juries that a specific traumatic event was the cause of their symptomtology.

Giving weight to the argument that Chiari malformation may be acquired as well as simply congenital are various published studies. The reader is directed to the following published articles:

1. J Neurosurg 1995 Sep;83(3):556-558 Acquired Chiari malformation and syrin associated with bilateral chronic subdural hematoma. Case report. Morioka T, Sho Nishio S, Yoshida K, Hasuo K, Fukui M. Department of Neurosurgery, Kyushu University, Fukuoka, Japan.

2. J Neurosurg 1998 Feb;88(2):237-242 Acquired Chiari I malformation secondary to spontaneous spinal cerebrospinal fluid leakage and chronic intracranial hypotension syndrome in seven cases. Atkinson JL, Weinshenker BG, Miller GM, Piepgras DG, Mokri B. Department of Neurological Surgery, Mayo Clinic, Rochestert, Minnesota 55905.

3. Pediatr Neurosurg 1995;22(5):251-254 Acquired Chiari-I malformation and hydromyelia secondary to a giant craniopharyngio. Lee M, Rezai AR, Wisoff JH. Division of Pediatric Neurosurgery, New York University Medical Center, NY 10016.

4. "Acquired" Chiari I malformation. Case report. Huang PP, Constantini S. Department of Neurosurgery, New York University Medical Center, New York.

5. Acta Neurochir (Wien) 1998;140(5):417-27; discussion 427-8. The acquired Chiari malformation and syringomyelia following spinal CSF drainage: a incidence and management. Johnston I, Jacobson E, Besser M. Department of Neurosurgery, New Children's Hospital, Australia.

6. A Case of a Temporary ACM/Syrinx, 28 year old female with a car accident head injury - when the injury healed the ACM/syrinx disappeared. Source - W.C. Clivero and D.H. Dinh, Neurology, v.30, #5, 758 (1992).4

Written By:Mrs. Scott On November 1, 2004 6:33 PM

I was in an auto accident in Sept.1998. I have had nothing but problems since. I just recently found out that I may have Chiari Malformation. My life has been a downhill battle since the accident. Pain constantly, diagnosis of fybromyalgia and chronic pain syndrome. I have syringomyelia from my T5-T10 area w/widening at T7. I know the problems I've been having were caused from that accident. The attorneys that represented me only got me $10,000 and that was including my totalled car. 1 yr. after my settlement I had surgery for a herniated disc in my L4-5. I found out that I had a $300,000. underinsured policy on my auto insurance yet the attorney told me to settle because I wasn't going to get any more money as the driver of the vehicle that hit me only had a $25,000. policy and with my medical bills and what they're fee was I should take what they were offering. Unfortunatly the chiropractor I was seeing at the time released me saying there was nothing more they could do for me. I knew there was still something wrong. It took 9 doctors and 3 yrs. of walking around in severe pain to find out about the disc. It has now been 6 yrs. since the accident and 3yrs. since my disc surgery. I have had to quit my job of 4 yrs. with the college and am on long term disability fighting my SS disability. I really feel I got screwed royally and am afraid theres nothing I can do about it now. I called the attorney after my surgery and they never returned my calls. Is there any recourse for me, I have suffered so much. Please e-mail me at - - - - -.

Written By:Bruce H. Stern On November 3, 2004 6:31 PM

Mrs. Scott - Thank you for your comment. I have emailed you as requested and await your response. I look forward to speaking with you soon.

Written By:Cathy Babcock On January 26, 2005 3:16 PM

Our daughter became ill after an MMR immunization. Six years later, she was ultimately diagnosed with Chiari Malformation, with a large Syringomyelia cyst within the spinal cord. She had brain surgery in 2000. Her neurosurgeon testified that the Chiari and Syrinx was aggravated by encephalitis following immunization.

We filed Vaccine Injury Compensation Fund claim in 1998, which we won in 2001. The first portion of the case is entitlement; the second portion is damages.

The Department of Justice hired psych doctors to pose the claim that it is Somatoform. The Judge appears to believe that she has somatoform, despite the fact she has a serious spinal cord injury.

We need someone who understands spinal cord injury, proof of damages, psychological aspect, etc. The lawyer with whom we've worked understands the Vaccine Injury Compensation Fund and procedures for that system. However, we really are lacking in our argument of damages, and I wonder about the benefit of hiring a lawyer who understands spinal cord injury.

Please advise your thoughts on this matter. Thank you very much.

Written By:Stephen Reese On February 14, 2005 2:44 AM

Hi! My wife (Janice) was a passenger in a car that was t-boned where she was sitting (July 4th 2004). Since the car accident Janice's neurosurgeon has diagnosed her with ACM based on her10/21&22/2004 MRI's and her many associated symptoms. Janice had an MRI of the brain on October 10th 2001 that Stated, "Tonsils are in satisfactory position" and "IMPRESSION: MRI of brain is normal". The reason Janice had the earlier MRI was because her job at that time (Visual Therapist) strained her eyes and caused her to have headaches in her forehead. Shortly after she quit her job the headaches went away. Isn't possible/probable many of ACM's were caused from trauma not congenitally they just didn't have a prior MRI (like Janice) to prove it?
The Insurance companies want the congenital link to reduce there liability.
Janice's insurance agency picked Neursurgeon has yet to directly tell her she has ACM. We found out his (Neurosurgeon) diagnosis and why from his correspondence with Janice's Psychiatrist. We ordered the Psychiatrist to give us copies of Janice's record, after we found out that our insurance assigned caseworker was telling all the different Dr.'s Janice's was seeing that there was no need to send copies to her primary care physician. We went and got copies from Janice's primary care physician and he didn't have any information from the Neurosurgeon, Neuropsychologist, Vascular, or Psychiatrist. We also found out that the Neurosurgeon didn't have a copy of the old (normal) MRI. Our next appointment on the 16th will probably be the last with him. We almost went to a Chiropractor to help relieve some of Janice's pain. Now that we know she has ACM we know that is the last thing she needs.
If you know of a Neurosurgeon, who puts the patient's health care first and specializes with ACM, please inform us of who and how we can contact him/her.

Written By:Terrie Clarkson On March 10, 2005 4:49 PM

Ihave recently diagnosed with c1m and all my doctors are trying to tell me tat it happens at birth. I have been reading information tht tells me otherwise. Do you have any suggstions as to how I can change their mind so that I can get this fixed? It is getting worse. Also, my doctor also said that there are treatments that can also take care of this. Is this true? thank ou. Terrie Clarkson

Written By:Regina Goodwin On April 7, 2005 4:19 PM

I have recently been diagnosed with Chiari Malformation. I have appointments with 2 nuerosurgeons. What are some questions I should ask in seeking treatment? THank you.

Written By:shelly On April 20, 2005 5:35 AM

Where can I get information to show that chiari malformations can be acquried or symptoms can be md worse by injury.

Written By:Angie H. On April 20, 2005 8:23 PM

what is the possibility that my symptoms may be worse after having surgery?

Written By:Karen On May 22, 2005 2:05 PM

I developed a chronic subdural hematoma after epidural anesthesia. Previous to the hematoma, I underwent two blood patches to stop the spinal fluid from leaking. Is this a common occurence??

Written By:sheila richardson On June 5, 2005 1:10 PM

I am seeding an attorney out of state who has access to a neurosurgeon. My 13 year old was called dead after a VP shunt surgery and 30 minutes after I received the news a consulting doctor that didn't work for the hospital brought her back on line. The 30 minutes that passed between him leaving her dead caused severe brain stem damage. Children's Hospital did and autopsy and found a hole in her intestine and determined it happened while she was under the first doctors care. I am from Minnesota and having trouble obtaining an attorney because they do more auto injuries. I have all the medical records the attorney collected after her death, but not only were out privacy rights violated, but he left her to die. The doctor at Children's said he knew her perforation of the stomach caused her to go into shock, and the shunt failed because it was put in the wrong place. Any assistance you could give me would be greatly appreciated. I am wondering if an out of state lawyer could get me justice for my daughter.

Written By:Lori On June 7, 2005 10:45 AM

My 10-year-old son was diagnosed in February 2005 with Chiari malformation type I. He has been suffering from headaches for five years now. In May 2005 we were involved in an auto accident, since the accident he has developed worsening of his headaches along with dizziness, gait disturbances, elevated reflexes, severe eye pain and he complains of his legs feeling heavy all the time. He has excellent doctors right now. He just recently went for another MRI because his doctor said it was possible to develop a syrinx after a car accident (even if it was a minor one). Our accident was not major, but it was not a minor one either. What I would like to know is it possible to develop a syrinx or make the chiari worse because of a car addident and whiplash? Also, my attorney feels that we should not settle my sons case right away. How long do I actually have to settle his case? I appreciate any help that you can give me.

Thank you,
Lori

Written By:Keith On July 20, 2005 12:21 PM

Hi there, I came accross your site here and found it interesting. I am not in the US, but I am a member of a support site for folks with Syringomyelia and ACM. When I posted my story, I got quite a response from people who have had a similar experience to me. Basically, I was in a near head on accident, suffered severe back and leg pain on the day and was diagnosed with whiplash several days later - fully expected to get better but after 2 years didn't and asked to see a doctor to properly diagnose me. I was found to have a syrinx and the neurosurgeon I consulted said "the accident caused the problem" and he diagnosed me with Post-traumatic Syringomyelia. The problem many folks face with this situation is that insurers will try and connect a congenital factor to the disorder, which I find incredible since they don't even know the mechanics of the disorder yet! I am desperately searching out literature to support my claim, and I'm thinking that if you have any expertise in this it may be worth you having a look at the support group site as there are a few folks struggling with their cases. As it happens, I am a registered psychologist, ironically specialising in the area of disabilities, and do a fair share of medico-legal assessments and reports, so I guess I am a little more equiped to deal with this aspect of the process, however, most folks I know are not and are floundering with their own legal situations. I'd be really interested in chatting to you if you would care to email me, I'm sure that if you have any experience dealing with similar situations to mine that it might be worthwhile having a look at the support group. Kind regards, I will look forward to hearing from you. Keith.

Written By:MS. HORSTMAN On July 29, 2005 3:14 PM

I was involved in an auto accident on 7/15/05 where in the car went airborne and finally hit large dirt piles. I wnt for an MRI and it was found that I have Chiari I Malformation with 7mm herniation. Since the accident I have severe headaches, pain in my shoulder generating into my arm and loss of strength in my hand. I also have pain and tingling and numbness in my hip and leg which generates doen to my feet. I feel absolutely awful anymore is there anything that can be done. The accident was not my fault a tanker truck ran me off the road are there any attorneys in Southern New Jersey area that you could recommend for my case. Thank you.

Written By:Lisa On November 17, 2005 4:29 PM

Wow, I'm a 34 year old that was involved in a T-bone accident w/me traveling @ 62mph as was the 21 year old that ran the stop sign. The accident occured on 05/05/04 the kid hit me on each side of my car, my head took out the drivers door window, before spinning me around hitting me on every other side of my vehicle before decending off a 13 foot embankment full of water. I was in physical therapy on and off for approx. a year. Then my insurance company had me see their doctor for evaulation which he then sent me for an MRI and has since said that I have chiaril one malformation which the insurance claim lady said is an issue from birth & they are not respossible financially to pay any further medical claim to neck and shoulders. So, basically I'm going to be suffering the rest of my life I guess, my health insurance went up $2000.00 last year with zero claims on it for me, and I can't afford for it to go up again. If anyone has any suggestions on whom could help me or lead me in the right direction. Like I stated before I have never been seen for any type of headaches, neck,back or shoulders problems ever, prior to this accident. My e-mail address is lcornwell@michiganchiefsales.com

Written By:Kathy Adams On December 7, 2005 11:01 PM

I was involved in a car accident in December 1993. I was misdiagnosed with pseudo tumor cerebi. In January 2004 was told on an MRI I actually had Chiari. In July 2004 was told by Dr. Bolognese I had Chiari and never had PTC. Basically I had surgery Nov 2004 and only recently felt up to checking into my misdiagnosis and trying to find out if I could do anything about the poor car settlement. I know that Ky and Ohio has a 1 year limit on time but did not know if they also have time extensions due to the disability of the person that is ill. Thank you,

Written By:Kane On January 25, 2006 7:40 AM

I've read all the previous three blog enteries by you and I must say you have made your point outstandingly. As you said this being your final post but I hope you will come up with more interesting articles sooner or latter. One can hope.

Written By:Monique Soucy On May 3, 2006 9:28 AM

I was dx with Chiari Type I in 1998 following a auto accident in which I was rear ended. I suffered from a mild case of headaches, low back pain and tingling in my left arm. That case was settled much to my dismay with an amount that I felt was insulting. At the time my attorney stated that I should settle and that I would never win if I brought it to court. So I settled. In June of 2005 I was once again rear ended. Now I suffer unbearable at times from headaches, facial pain, low back, mid back, neck pain, shoulder pain, dizziness, and at times even nausau. My MD feels that I have cervical radiculopathy and that cervical traction would be helpful for me. I have had one appt with the traction. My physical therapist has ceased all treatment after studying my malformity. She is concerned with the traction and the affect that it may be having with my condition. At this time I am deeply questioning whether or not this may be aquired from my accident. As a child I did not present any of these symptoms and lead a very normal childhood. When I was 18 and was in the accident in 98 I seemed to have recovered rather quickly, but now that I have had two children (vaginal births) and have been in the second car accident I am having a much harder time recovering. I am looking for anyone that would be willing to share some information on a medical level that would pertain to acquired CHiari Malformation Type I. I am trying everything in my power to avoid surgery!! Please email me at mnq_soucy@yahoo.com

Written By:kimberly dommasch On July 6, 2006 4:49 PM

I WROTE A BLOG EARLIER TODAY AND AM HOPING THAT YOU WILL STILL HAVE TIME TO READ IT. I AM DESPERATE FOR ADVICE FROM ANYONE WHOM CAN RELATE TO MY STORY
THANK YOU
KIMBERLY
EMAIL kdommasch@msn.com

Written By:Beverly On July 27, 2006 4:31 AM

Upright MRI info type in CHIARI in the site search box http://tinyurl.com/9s5hu or click my name

Written By:KEVIN On August 10, 2006 7:24 PM

Hi everyone, i will try and make this short as possible. I was involved in a rearend MVA by a DRUNK DRIVER in 2001, before the accident i had no problems, after the accident i had lower back pain and neck pain. In 2003 i started to lose sensation in my right hand,i had an MRI done and thats when they found fluid in my spine (SYRINX) the insurance companys doctor says i was born with it. Could this be true? I think not because i had no problems before the accident. If anyone has any info to help me PLEASE E-MAIL me at sixfoot@telus.net THANK YOU.

Written By:alicia On September 25, 2006 6:29 PM

Iwas diagnosed with acm at 12 years old I am now 27. last november i was involved in a little car accident which caused whiplash. within 2 days of sustaining my injury my eyes started getting all out of focus my head felt like it was going to explode. i know that the car accident triggered my acm but who do i get to prove this? dr. say that i now have intercranial brain pressure with optic nerve swelling. am i just supposed to live with this my head hurts constantly somedays i can see some i can't will the pain ever stop i can't even hold a job to support my 2 small kids if somebody can help please contact me. the accident was not my fault, but now i am paying for it with my health.

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