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Unread 03-25-2011, 07:42 AM   #1
Miss Priss
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Default Newly Diagnosed

Hi, I'm Miss Priss. I live in SE North Carolina. I'm married to a wonderful man, and together we have raised six children. I'm retired from the corporate world and am quite active, volunteering for a youth soccer organization.

I've had symptoms for 25 years and have been diagnosed with everything from Fibromialgia, to hypocondria. I had unexplained menengitis twice, once at age 34 and again at age 44.

Since then, I've had swelling and pain on the back of my neck, it's always there, sometimes it's worse. When I coughed, sneezed, or otherwise strained in any way, it felt like the top of my head was exploding. I also have trouble swallowing, and have a killer gag instinct. It feels like I have something stuck in my throat.

I regularly would have horrible headaches with vomiting, which everyone thought were migraines. But the migrane medicine had no effect.

I have been to specialist after specialist, gone through MRI's, CAT Scans, Brain Scans, etc for years trying to diagnose the problem.

Finally, I gave up and stopped even going to the doctors because they couldn't provide any answers. Why bother wasting the time and money? I decided it must be normal to have migrane headaches, vomiting, and feel like the top of your head is exploding when you cough, sneeze, or strain at all. I'm so exhausted from the constant pain at this point.

Four years ago, and orthopedic doctor found bone spurs on L4, L5, and L6 and I've been treated with cortisone shots, deep tissue massage, and pain medication.

Two years ago, I started having vertigo, nausea, and constant numbness and pain in my arms and legs. It feels quite like the same pain as you would have with a toothache.

After four years on the "Pain Management Merry Go Round", I decided to go to a neurosurgeon to see about having the bone spurs removed.

This was this past Tuesday. He looked at a four year old MRI and diagnosed Chiari Malformation in ten minutes.

What a revelation!! Suddenly the puzzle pieces fell into place for me. I've been on the internet for two days now, researching this malfunction and I'm happy to report that I'm NOT a hypocondriac or a drug addict seeking pain medication!!!

I'm scheduled for another MRI next week, so the neurosurgeon can compare to the one four years ago.

Thanks for this opportunity to talk to others that have also been through this.

Any advice would be greatly appreciated.
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Unread 03-31-2011, 08:27 AM   #2
pabb
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validation is a wonderful thing, eh?
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Unread 03-31-2011, 09:27 PM   #3
sueofct
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Quote:
Originally Posted by Miss Priss View Post
Hi, I'm Miss Priss. I live in SE North Carolina. I'm married to a wonderful man, and together we have raised six children. I'm retired from the corporate world and am quite active, volunteering for a youth soccer organization.

I've had symptoms for 25 years and have been diagnosed with everything from Fibromialgia, to hypocondria. I had unexplained menengitis twice, once at age 34 and again at age 44.

Since then, I've had swelling and pain on the back of my neck, it's always there, sometimes it's worse. When I coughed, sneezed, or otherwise strained in any way, it felt like the top of my head was exploding. I also have trouble swallowing, and have a killer gag instinct. It feels like I have something stuck in my throat.

I regularly would have horrible headaches with vomiting, which everyone thought were migraines. But the migrane medicine had no effect.

I have been to specialist after specialist, gone through MRI's, CAT Scans, Brain Scans, etc for years trying to diagnose the problem.

Finally, I gave up and stopped even going to the doctors because they couldn't provide any answers. Why bother wasting the time and money? I decided it must be normal to have migrane headaches, vomiting, and feel like the top of your head is exploding when you cough, sneeze, or strain at all. I'm so exhausted from the constant pain at this point.

Four years ago, and orthopedic doctor found bone spurs on L4, L5, and L6 and I've been treated with cortisone shots, deep tissue massage, and pain medication.

Two years ago, I started having vertigo, nausea, and constant numbness and pain in my arms and legs. It feels quite like the same pain as you would have with a toothache.

After four years on the "Pain Management Merry Go Round", I decided to go to a neurosurgeon to see about having the bone spurs removed.

This was this past Tuesday. He looked at a four year old MRI and diagnosed Chiari Malformation in ten minutes.

What a revelation!! Suddenly the puzzle pieces fell into place for me. I've been on the internet for two days now, researching this malfunction and I'm happy to report that I'm NOT a hypocondriac or a drug addict seeking pain medication!!!

I'm scheduled for another MRI next week, so the neurosurgeon can compare to the one four years ago.

Thanks for this opportunity to talk to others that have also been through this.

Any advice would be greatly appreciated.
Hi. I was diagnosed with Chiari in 05 and had the surgery in 06. I had similar symptoms. My most severe symptoms were dizziness (not vertigo), severe hypersenitivity to light and sound, and pain and muscle wasting in my right arm. I have a 5mm herniation. It took a full year to recover from that surgery, was finally feeling better, but since dx with Fibro and Thoracic Outlet Syndrome, which is 10 times worse than Chiari. Chiari is not well recognized by doctors but I was very lucky to find a wonderful Neorusurgeon.
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Unread 06-30-2011, 09:24 AM   #4
Novaember
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My sentiments exactly. I was diagnosed two weeks ago and I am excited to have all of these symptoms GO AWAY! I love your attitude and look forward to hearing your stories of recovery!
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Unread 09-11-2011, 10:20 PM   #5
nr43492
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Join Date: Sep 2011
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Default How to relieve Chiari symptoms?

Hi there.

I saw your post about your symptoms going away. I was curious about what you did. I have an appointment with my neurosurgeon this week. I feel constant intracranial pressure and even blurred vision occasionally. I feel there is something going on with nerves too. I hope surgery is not my only option. Any ideas? I really could use the help. I'm on a leave of absence from work as a teacher. This condition is debilitating.

Thank you.
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Unread 07-18-2012, 11:45 AM   #6
crmsf11
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Join Date: Jul 2012
Posts: 4
Default have you ever been tested for Tick Borne Diseases, such as Lyme Disease?

All of your symptoms are that of Lyme Disease and other Tick Borne Diseases.
I have Chronic Rocky Mountain Spotted Fever and Chronic Lyme Disease.
I came to this page today to find the link between Chiari and Tick Borne Diseases.
I read your post and thought I'd mention that to you.
When you get a chance look at the info of a group called the Tick Borne Disease Alliance, on FB they are TBDA, **or another group known as ILADS

Stay away from anything related to the IDSA, they are not a good Tick Disease Group.

Sending Healing Wishes Your Way!


Quote:
Originally Posted by Miss Priss View Post
Hi, I'm Miss Priss. I live in SE North Carolina. I'm married to a wonderful man, and together we have raised six children. I'm retired from the corporate world and am quite active, volunteering for a youth soccer organization.

I've had symptoms for 25 years and have been diagnosed with everything from Fibromialgia, to hypocondria. I had unexplained menengitis twice, once at age 34 and again at age 44.

Since then, I've had swelling and pain on the back of my neck, it's always there, sometimes it's worse. When I coughed, sneezed, or otherwise strained in any way, it felt like the top of my head was exploding. I also have trouble swallowing, and have a killer gag instinct. It feels like I have something stuck in my throat.

I regularly would have horrible headaches with vomiting, which everyone thought were migraines. But the migrane medicine had no effect.

I have been to specialist after specialist, gone through MRI's, CAT Scans, Brain Scans, etc for years trying to diagnose the problem.

Finally, I gave up and stopped even going to the doctors because they couldn't provide any answers. Why bother wasting the time and money? I decided it must be normal to have migrane headaches, vomiting, and feel like the top of your head is exploding when you cough, sneeze, or strain at all. I'm so exhausted from the constant pain at this point.

Four years ago, and orthopedic doctor found bone spurs on L4, L5, and L6 and I've been treated with cortisone shots, deep tissue massage, and pain medication.

Two years ago, I started having vertigo, nausea, and constant numbness and pain in my arms and legs. It feels quite like the same pain as you would have with a toothache.

After four years on the "Pain Management Merry Go Round", I decided to go to a neurosurgeon to see about having the bone spurs removed.

This was this past Tuesday. He looked at a four year old MRI and diagnosed Chiari Malformation in ten minutes.

What a revelation!! Suddenly the puzzle pieces fell into place for me. I've been on the internet for two days now, researching this malfunction and I'm happy to report that I'm NOT a hypocondriac or a drug addict seeking pain medication!!!

I'm scheduled for another MRI next week, so the neurosurgeon can compare to the one four years ago.

Thanks for this opportunity to talk to others that have also been through this.

Any advice would be greatly appreciated.
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Unread 02-05-2013, 10:04 AM   #7
Angelina55
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Quote:
Originally Posted by Miss Priss View Post
Hi, I'm Miss Priss. I live in SE North Carolina. I'm married to a wonderful man, and together we have raised six children. I'm retired from the corporate world and am quite active, volunteering for a youth soccer organization.

I've had symptoms for 25 years and have been diagnosed with everything from Fibromialgia, to hypocondria. I had unexplained menengitis twice, once at age 34 and again at age 44.

Since then, I've had swelling and pain on the back of my neck, it's always there, sometimes it's worse. When I coughed, sneezed, or otherwise strained in any way, it felt like the top of my head was exploding. I also have trouble swallowing, and have a killer gag instinct. It feels like I have something stuck in my throat.

I regularly would have horrible headaches with vomiting, which everyone thought were migraines. But the migrane medicine had no effect.

I have been to specialist after specialist, gone through MRI's, CAT Scans, Brain Scans, etc for years trying to diagnose the problem.

Finally, I gave up and stopped even going to the doctors because they couldn't provide any answers. Why bother wasting the time and money? I decided it must be normal to have migrane headaches, vomiting, and feel like the top of your head is exploding when you cough, sneeze, or strain at all. I'm so exhausted from the constant pain at this point.

Four years ago, and orthopedic doctor found bone spurs on L4, L5, and L6 and I've been treated with cortisone shots, deep tissue massage, and pain medication.

Two years ago, I started having vertigo, nausea, and constant numbness and pain in my arms and legs. It feels quite like the same pain as you would have with a toothache.

After four years on the "Pain Management Merry Go Round", I decided to go to a neurosurgeon to see about having the bone spurs removed.

This was this past Tuesday. He looked at a four year old MRI and diagnosed Chiari Malformation in ten minutes.

What a revelation!! Suddenly the puzzle pieces fell into place for me. I've been on the internet for two days now, researching this malfunction and I'm happy to report that I'm NOT a hypocondriac or a drug addict seeking pain medication!!!

I'm scheduled for another MRI next week, so the neurosurgeon can compare to the one four years ago.

Thanks for this opportunity to talk to others that have also been through this.

Any advice would be greatly appreciated.
I had this surgery in 2010 and my symptoms were gone afterwards! I had the cranial pressure. If I talked to loud, held my breath for more than a second, anything simple it felt as if my brain was being like torn apart it hurt so bad! I also had a little blurred vission, vertigo to the point of passing out, pain in my arms and spine, um... burning behind the eyes. But after the surgery alot of the symptoms left right away. It took awhile before noticing the others were gone. I still have some vertigo episodes sometimes but that is because I have migraines they think. So it might not be because of the Chiari. I hope for the best for you! Make sure you let us know how you do!
Angelina
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