Hello everyone...appreciate the friendly welcomes.
I was diagnosed in April 2012 with a 6.5mm herniation after an unrelated MRI. A follow-up MRI wwo contrast in May confirmed the 6-6.5mm herniation but showed normal flow. However, in Feb 2004 I had a pituitary MRI that did NOT show a herniation or any other abnormalities.
In May of 2011, I was in a nasty train accident where I had among other things lateral whiplash. I also tore up my shoulder and damaged nerves in my biracial-plexus. I have numerous neurological issues now including numbness on my left side (face, neck, chest, arm, fingers) as well as left side neck spasms, hearing loss, throat/voice issues and dizziness. My doctors and I believe these are caused by nerve and muscle damage and not the Chiari.
That said, I have pretty clear evidence that the herniation was not present 8 years ago and the only trauma I have had was the train accident. Could this have cause the herniation? If so, does anyone know how?
HI, I am/was in similar situation and with similar symptoms - Car accident whiplash + accumulation of years of sports /falling on head/neck - my MRI showed major neck trama c- 2 thru to 7 way out of alignment (5-6 really bad) PLUS they found a 6MM - it seemed that the additonal neck trama was enought to put the pressure on the malformation to create this situation. (they don’t know if I always had the malformation or if it developed from repeated blows/ neck bones pressing on spinal cord and fluid- and all the doctors I went to were pretty much dismissive of the Chairi - so i gave up on them)
I now sleep with super thin pillow and use a good neck traction machine to take the daily stress of the neck from work/sitting /twisting in front of a PC all day and slowly it helped (seems to take time for neck to re-align with change of pillow and lifestyle) . My big issue was I was never getting better & the Orthopedist (they too believed it was skelton/nerve damage in origin) kept wanting to up my pain meds (hydro) - I finally realized this was just masking things - I weaned myself of and slowly a lot of the symptoms disappeared - it seemed the medication was bathing the muscles with fake pain relief and when things started to dry up everything was way worst until I took med’s again and that was really just hiding the effects (a vicous cycle)- 6 months later and no pills, things are much better - another thing was I cut out alcohol (no more than a drink or two at the most - anymore and a untypical type of hangover lasts 3-4 days) and that seems to help as well - I now hate the lawn mover as the vibration from it leaves everything from finger tips to top of neck tingling for 2 hours after - now I rambling and hope some of this helps - it kind of helped me knowing others were i the same boat - good luck
Hi,
Welcome to the family. I was in a car accident in June. I immediately had severe head and neck pain with ICP, hypersentivity to light & sound, throwing up and stroke like symptoms. They only took my seriously because I was slurring my speech and my blood pressure was 210/120…3 ER visits in the same week, I finally got an MRI which showed the chiari. I had all the symptoms on and off since I was 16. Difference now is they are constant, worsened and I’ve had a headache since the accident. I know the car accident made it worse. Everyones situation is different but at the same time similar. I would highly recoomended finding a specialist you can trust,have faith in and knows about Chiari. I’ve been through several. Tramadol works for some of us for pain. I experiment with homeopathic remedies, adjustable bed for elevation, pillows and a cervical collar. Anything to relieve stress on the neck. I found comfort here. You have people who can relate, understand, lift you up and can vent freely. I joke I’m a cross between crazy & the incredible hulk. My head and ear pain coupled with my extreme sensitivity to sound makes me angry/irritable. And any kind of vibration is HORRIBLE!
The accident would not have caused the malformation as Chiari is a malformation of the back of the skull. But it could have caused enough extra pressure to herniate the cerebellar tonsils. Head or neck trauma often brings on symptom pretty strongly and herniation is a symptom.
It is also possible that your 2004 MRI had some herniation. But radiologist differ in reporting it. Some have a minimum of 3mm, some 5mm before they will even mention it. Herniation can also increase over time.
Looking back we could see some symptoms growing up and slowly worsening but it wasn't until a head trauma/whip lash that they came on hard. I was diagnosed 16 months later at the age of 21.
As far as the symptoms you're experiencing...they could or could not be related to the Chiari. Since you had the shoulder trauma it would be hard to say for sure. What you described, sound like a lot of my symptoms from the Chiari but....
According to the National Institute of Neurological Disorders & Stroke (NINDS). They define a Type 1 malformation as the following.
"Type I involves the extension of the cerebellar tonsils (the lower part of the cerebellum) into the foramen magnum, without involving the brain stem. Normally, only the spinal cord passes through this opening. Type I — which may not cause symptoms — is the most common form of CM and is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition. Type I is the only type of CM that can be acquired."
I actually asked our GP about this because to me that read like CM was something you could catch LOL, our GP said that the statement was referring to trauma like a car accident.
I was hit in the back of the head by a baseball bat. Twenty some years ago. In 2009 I fell backward and bruised myself so severely that from my shoulders to my butt was black and blue. Since that time I have poor balance, loss of vision, vomiting, severe headaches and upper body weakness. Neurologist said cerebellar tonsil on right side is 5.5 mm and left is 2.4. Doctor said he's not doing anything about it. I just don't understand how some doctor do act and others don't care. Good luck to all of you.
Well it might seem like he doesn't care, it may not be so simple. The doctor may just believe that the risk outweighs the benefit at this point in time and it might be more prudent to attempt to manage the symptoms than perform surgery.
Surgery does carry a high rate of success, but if there are complications from surgery... they can be severe and possibly fatal. My wife does not have a syrinx and the opinion that we got from our NS was that unless it progresses to the point where she is loosing sensation in her limbs, is unable to walk, or unable to control bladder or bowel... he didn't want to even discuss surgery and it's associated risks.
Part of me wants her to push for a second opinion and a cine MRI... and part of me wants her to try a different pain med to manage headaches.
This is great information, thank you everyone. I guess I need to push my neurosurgeon to "put it in writing" that herniations like this can be caused by head/neck trauma. With my pre/post accident MRIs its clear that something has drastically changed.
Also a question...does having a 6mm herniation I have Chiari? Or does Chiari include more than just the herniation?
I have wondered the same thing because i have more than 1 syrinx and ddd, I had many accidents in the Navy that caused bangs to head, back and neck. I have no clue if i have acquired or not. Good question
I went to a doctor who told me to wait but I read that its irriversable so I got a second opinion who told me I was at "8" with syrinx and needed surgery right away or I would be paralyzed!! I got the surgery and am in my third week of recovery. Prior to surgery I was in soo much pain it was very hard to walk and I had a constant headache....at this moment, the only pain I have is in my head where the surgery was performed which the doctor said should go away in a few weeks. No one understands the pain we are in until they are going thru it themselves. The pain in my head right now is minimal to the pain I was in before. GET A SECOND OPINION!! Better safe than sorry.
Maxpower said:
Well it might seem like he doesn't care, it may not be so simple. The doctor may just believe that the risk outweighs the benefit at this point in time and it might be more prudent to attempt to manage the symptoms than perform surgery.
Surgery does carry a high rate of success, but if there are complications from surgery... they can be severe and possibly fatal. My wife does not have a syrinx and the opinion that we got from our NS was that unless it progresses to the point where she is loosing sensation in her limbs, is unable to walk, or unable to control bladder or bowel... he didn't want to even discuss surgery and it's associated risks.
Part of me wants her to push for a second opinion and a cine MRI... and part of me wants her to try a different pain med to manage headaches.
Look at my link...they explain it pretty good. There IS a lot of dispute over what Chiari is but the research is proving it is in fact a malformation of the skull. My doctor made my diagnosis based on posterior fossa measurements being too small rather than basing it on the symptom of herniation.
I was in a bad accident a year ago and had symptomatic Chiari, but now it is completely worse. I didn't know what was going on until my symptoms got so bad that every symptom I had pointed to Chiari. I didn't even know it could get worse after trauma, or cause it. Trauma to head/and or neck can cause Chiari.
They will tell you one of two things you were born with it or it could be from the accident. I don't think you'll ever get proof because doctors, for some reason, don't want to blame Chiari.
I was diagnosed with Chiari in May 2012, after an MRI because of numbness, pain in my neck, shoulders and hands after being in a car accident in Feb. I had, had no symtoms, at least not really none I could pin on the Chiari. My NS, seems to think I was born with it, the MRI also revealed that I have bulging disc’s at c-2 thru c-6, but all he was interested in doing was the Chiari decompression. If I was born with it, I would of thought I would of had problems sometime in the last 48 years, not just after the accident were I was rear ended when I was stopped, by a car going 50 mph, So I am just as confused as I was before I was diagnosed to what is causing the pain.So I will continue to be in pain while waiting on the second opinion. If anyone has any suggestions or insight or just to talk and exchange thoughts I would welcome it.
I'm actually not surprised that you didn't have symptoms....Looking back, I did, we just didn't know. The onset of severe symptoms didn't come till after an injury though. I have had many people say they never had symptoms until an injury. My surgeon explained that with say a whiplash injury, it increases the pressure and your body can't recover.
My uncle was in his 50's before onset AFTER a neck injury. He even lost his job because he was so sick. They first told him the problem was a bulging disk and put him on steroids for several weeks. When he kept having symptoms they did another MRI and the bulging disk was gone. He thinks the steroids allowed the swelling to go down enough that it healed on its own....But there was still all the Chiari symptoms. I told him about Diamox and he asked his doctor to let him try it. The first dose was way too low and didn't do anything but when they upped it, it only took a few weeks for him to be back up on his feet! Now, nearly 2 years later, he is working full time again. He only took the Diamox for a few months before he was well enough to stop. For him it was a huge success and would be something to look in to!
It didn't work so well for me prior to surgery. My surgeon said that every patient responds differently to it and my body just didn't take it. If you want more info, let me know. It's worth trying before doing surgery. I have had great success with surgery but it's a lot to recover from!
ldy said:
I was diagnosed with Chiari in May 2012, after an MRI because of numbness, pain in my neck, shoulders and hands after being in a car accident in Feb. I had, had no symtoms, at least not really none I could pin on the Chiari. My NS, seems to think I was born with it, the MRI also revealed that I have bulging disc's at c-2 thru c-6, but all he was interested in doing was the Chiari decompression. If I was born with it, I would of thought I would of had problems sometime in the last 48 years, not just after the accident were I was rear ended when I was stopped, by a car going 50 mph, So I am just as confused as I was before I was diagnosed to what is causing the pain.So I will continue to be in pain while waiting on the second opinion. If anyone has any suggestions or insight or just to talk and exchange thoughts I would welcome it.