That's what my MRI from 2009 says anyways. Nice huh...like I could of been informed of that 2 years ago. It says "The cerebellar tonsils are slightly low lying, extending 3 to 4 mm below the level of the foramen magnum. This does not meet the imaging criteria for Chiari-I Malformation."
Anyways, feeling a little betrayed by that. So my MRI last week showed a 5 mm chiari-I malformation. That means that it is progressing, right? What does this mean for my prognosis? Not to mention how my symptoms have gone from a headache a few times a month to that huge list I wrote out the other day, in the past couple of months.
Someone asked if I had an epi during labor and I did. I was stuck 7 times, he couldn't get the epi to work and then gave me a spinal. Because of the EXTREME headache a few days later, after I gave birth, I was given a blood patch on my spine, which actually made my headache much worse. They couldn't understand why.
I'm attaching a copy of the 2009 MRI compared to my 2011 MRI...please give me feedback. I'm so anxious over of all this. I haven't been to a neuro yet so you ladies are all I have. Thank you so much in advance for any help. Big hugs....
Where do I find the symptom list Abby?
They did the blood patch, before my MRI, because they thought I was leaking spinal fluid from all the epi attempts so they were trying to repair what they thought was wrong.
What symptoms are you having?
The Dr. who read my MRI in 2009 wrote that about it not being a chiari malformation. I was very surprised. After researching it as little as I have, it's clear that it so totally IS a chiari.
I can tell you that mine was a 5mm per the CT scan, but during surgery that discovered it was 6 - a whole millimeter more! My neurosurgeon had me undergo a CINE MRI (pronounced see-nay), which is a flow study. They found that my cerebellar tonsils had me completely blocked up, which is when the decision was made to do surgery. If your doc hasn’t already ordered one of these, you might suggest it. If mine had relied on my CT, MRI and MRA alone, he wouldn’t have performed surgery.
Thank you, I will probably ask for that test, depending on how this neuro is.
How are you feeling now that you've had surgery? What were your symptoms before surgery? After?
Abby, I still haven't found your symptom list. I'm interested in your specific symptoms too.
If you go to some of the doctor's websites that are more prominently known for being a Chiari neurosurgeon/specialist, they ususally indicate CINE MRI's are one of the tools that they use, especially in questionable cases. Like I said, mine clearly showed obstruction. Empower yourself as a patient, and tell your NS you'd like that test to either confirm your suspicions or to put it to bed. Or, find another doctor that's more sympathetic and willing to listen. The good news is that the CINE MRI is no where near the cost of a regular MRI, and my insurance didn't require a pre-auth for it. From Chiaricare.com "A CINE flow study is an MRI study that evaluates the flow of spinal fluid through the area of the foramen magnum. The CINE MRI is performed in the MRI scanner- the same as a regular MRI. The test takes about 30 minutes. In some cases, the CINE shows obstruction of flow through the area."
My pre-op symptoms (didn't have Syringomyelia):
Neck strain or tension - I'd developed a neck "tic" due to the ache in my neck
Frequent migraines, which once diagnosed with Chiari, you're told they're Chiari headaches
Pressure behind eyeballs when having a "migraine"
Extreme clinical vertigo - my last episode lasted 62 days
Occasionally, problems swallowing
Balance and hand/eye coordination issues
Roaring in my ears (not tinnitus). Kind of like listening to the inside of a seashell, but louder. Mostly at night.
Frequent urination
Hiccups
Restless Legs Syndrome
Post-Op (surgery 5/3/2011)
Balance problems. Doc said it's common and I will need to work to get rid of it. He recommended Yoga.
Neck still aches, but it's not pain
Short short short term memory. Doc said it'll go away.
I have nerve damage from the surgery and the halo they used to stablize my head during surgery, but it's getting better.
Overall, I had an amazing recovery. I was walking around the block on day 3. I attribute it to an excellent doctor and the supplements that I took before and after.
tashasheart4u said:
Thank you, I will probably ask for that test, depending on how this neuro is.
How are you feeling now that you've had surgery? What were your symptoms before surgery? After?
Abby, I still haven't found your symptom list. I'm interested in your specific symptoms too.
Wow. Glad you’re feeling a bit better. What supplements did you take?
Susan Murray said:
If you go to some of the doctor’s websites that are more prominently known for being a Chiari neurosurgeon/specialist, they ususally indicate CINE MRI’s are one of the tools that they use, especially in questionable cases. Like I said, mine clearly showed obstruction. Empower yourself as a patient, and tell your NS you’d like that test to either confirm your suspicions or to put it to bed. Or, find another doctor that’s more sympathetic and willing to listen. The good news is that the CINE MRI is no where near the cost of a regular MRI, and my insurance didn’t require a pre-auth for it. From Chiaricare.com “A CINE flow study is an MRI study that evaluates the flow of spinal fluid through the area of the foramen magnum. The CINE MRI is performed in the MRI scanner- the same as a regular MRI. The test takes about 30 minutes. In some cases, the CINE shows obstruction of flow through the area.”
My pre-op symptoms (didn’t have Syringomyelia):
Neck strain or tension - I’d developed a neck “tic” due to the ache in my neck
Frequent migraines, which once diagnosed with Chiari, you’re told they’re Chiari headaches
Pressure behind eyeballs when having a “migraine”
Extreme clinical vertigo - my last episode lasted 62 days
Occasionally, problems swallowing
Balance and hand/eye coordination issues
Roaring in my ears (not tinnitus). Kind of like listening to the inside of a seashell, but louder. Mostly at night.
Frequent urination
Hiccups
Restless Legs Syndrome
Post-Op (surgery 5/3/2011)
Balance problems. Doc said it’s common and I will need to work to get rid of it. He recommended Yoga.
Neck still aches, but it’s not pain
Short short short term memory. Doc said it’ll go away.
I have nerve damage from the surgery and the halo they used to stablize my head during surgery, but it’s getting better.
Overall, I had an amazing recovery. I was walking around the block on day 3. I attribute it to an excellent doctor and the supplements that I took before and after.
tashasheart4u said:Thank you, I will probably ask for that test, depending on how this neuro is.
How are you feeling now that you’ve had surgery? What were your symptoms before surgery? After?
Abby, I still haven’t found your symptom list. I’m interested in your specific symptoms too.
Vitamedica surgical recovery multivitamin. Has no vitamin e, which can cause bleeding during surgery, but is needed post op. You can get on Amazon, but I've included the link to the specific product on Vitamedica's website: http://vitamedica.com/products/recovery-products/recovery-support-program/
Others taken in addition to the above:
- Drink 2 liters of water a day before and after
- Vitamin C w/ bioflavonoids on full stomach - antioxidant allowing blood vessels to stay relaxed and open, helping you heal. Makes collagen, which helps brain chemistry, mood and energy.
- Vitamin D w/ calcium - Makes sure cell growth occurs properly and helps wounds heal.
- Magnesium - Required by other nutrients, Like vitamin D and calcium, to function properly. Magnesium is needed to create nerve impulses. Proper wound healing after surgery requires the right amounts of calcium and magnesium.
- B complex w/ panothenic acid - nerve and brain tissue healing and regeneration, pain, sleep, stress
- B12 sublingual on empty stomach - same as above
- Folic acid on empty stomach taken at same time as B12 - works synergistically. Vital role in the work and growth of cells. Cannot take this without B12
- Zinc on full stomach at night - keeps your immune system healthy and helps speed wound healing.
- CoQ10 on full stomach at night - Produces energy for cells and an antioxidant
- Alpha-Lipoic Acid - Passes easily into the brain to protect and build nerve tissue
I know the above is more than a handful, but I swear by them. I don't remember the list of amino acids - there are three of them. I can give them to you later.
tashasheart4u said:
Wow. Glad you're feeling a bit better. What supplements did you take?
Susan Murray said:If you go to some of the doctor's websites that are more prominently known for being a Chiari neurosurgeon/specialist, they ususally indicate CINE MRI's are one of the tools that they use, especially in questionable cases. Like I said, mine clearly showed obstruction. Empower yourself as a patient, and tell your NS you'd like that test to either confirm your suspicions or to put it to bed. Or, find another doctor that's more sympathetic and willing to listen. The good news is that the CINE MRI is no where near the cost of a regular MRI, and my insurance didn't require a pre-auth for it. From Chiaricare.com "A CINE flow study is an MRI study that evaluates the flow of spinal fluid through the area of the foramen magnum. The CINE MRI is performed in the MRI scanner- the same as a regular MRI. The test takes about 30 minutes. In some cases, the CINE shows obstruction of flow through the area."
My pre-op symptoms (didn't have Syringomyelia):
Neck strain or tension - I'd developed a neck "tic" due to the ache in my neck
Frequent migraines, which once diagnosed with Chiari, you're told they're Chiari headaches
Pressure behind eyeballs when having a "migraine"
Extreme clinical vertigo - my last episode lasted 62 days
Occasionally, problems swallowing
Balance and hand/eye coordination issues
Roaring in my ears (not tinnitus). Kind of like listening to the inside of a seashell, but louder. Mostly at night.
Frequent urination
Hiccups
Restless Legs Syndrome
Post-Op (surgery 5/3/2011)
Balance problems. Doc said it's common and I will need to work to get rid of it. He recommended Yoga.
Neck still aches, but it's not pain
Short short short term memory. Doc said it'll go away.
I have nerve damage from the surgery and the halo they used to stablize my head during surgery, but it's getting better.
Overall, I had an amazing recovery. I was walking around the block on day 3. I attribute it to an excellent doctor and the supplements that I took before and after.
tashasheart4u said:Thank you, I will probably ask for that test, depending on how this neuro is.
How are you feeling now that you've had surgery? What were your symptoms before surgery? After?
Abby, I still haven't found your symptom list. I'm interested in your specific symptoms too.
Hi tashaheart4u,
I went through the same thing as you did! My tonsils are 10 and 12mm at the moment. I went through hell until I found a new primary care doctor who referred me to the neurosergeon I have today! Finally, a light at the end of the tunnel!
Hang in there!
Tina
I looked up chiari radiology guidelines today. Just curious as to exactly where/what was considered a chiari malformation as opposed to a "normal" tonsillar ectopia (aka tonsils slipping down a bit). One resource stated that it had to be >5mm to be considered a chiari malformation. Another said that anything 3mm or less is considered normal, but didn't state what >4mm was considered - chiari or ???
"Unless tonsils > 5 mm and/or pointed, probably not clinically significant Chiari 1 malformation. Tonsillar ectopia > 12 mm nearly always symptomatic."
It also noted that someone can have >5mm and no symptoms as well as <5mm and be symptomatic. It seems to me that the best choice for doctors is to go more by symptoms. Eliminate any other possible reasons and go from there.
Mine are 5mm and I have a list wrote out of about 12 symptoms. It’s not fun. Every day feels like I’m stuck in a fog and I have such a hard time focusing and having normal conversations, even aside from the pain. Thanks for looking that up Katie! Even at 3-4mm I should of been told something wasn’t quite right.
HI. My Chiari is 5 mm as well and I also have plenty of symptoms; all of which have been minimized by docs that I have seen. So until (and hopefully they won’t) it gets worse; I will take the meds, suck up the pain and live like this…
Heather, I’m curious what your symptoms are. Could you please share. I’m sorry that the only treatment for you at this time includes sucking up the pain. That truly does suck. Hugs.
Heather Hill said:
HI. My Chiari is 5 mm as well and I also have plenty of symptoms; all of which have been minimized by docs that I have seen. So until (and hopefully they won’t) it gets worse; I will take the meds, suck up the pain and live like this…
Hiya
I am 4mm I’m in that position where I’m fighting with doctors and Neurologist neurologistfor help coz I’m suffering so many symtoms . I have Neurologist appointment again in a month . I was given this symtoms list by my aunt who works at the Hosptial to do check list ready for my appointment
Hope it helps x
This is such an all-inclusive list. All I did when reading through it was go “check… check… check…”! You say that you got it from your aunt functioning in her job as nurse. Did it originally come from a book? an in-house document? It would be nice to have references attached to it.
Thanks for sharing the document.