Has Anyone had such pain in the back by there tale bone before i am a person that has a high threshold for pain and this is so bad i can not sleep?
it cause me to feel like my leg wants to give out ?? I am 10years post op now and new things are just starting ?? Thank You
I have sharp pain in my tailbone if I sit for too long. I don't know if it's the Chiari or the fact that I've been out of work for the past two months!! If you haven't brought it up to your PCP or NS, you probably should...
Good luck!
Katrina W.
I have the same type of pain that Katrina mentioned, it almost feels like my tailbone is real sharp and poking me from the inside! I'm 9 weeks post op and it just started about 4 weeks after surgery.
Dear La Gina Roy:
I just noted your post. I can relate to some of your symptoms. I just had surgery for Tethered spinal cord almost two months ago. If you want to ask me so more questions, go ahead. I had ot go out of town for my last two surgeries this year. A website where I went to was the
Wisconsin Chiari Center. If you google the name, the site comes up. The website is really informative and might help. I understand back pain and leg weakness, etc. I also had my second
Chiari surgery this past year too. Just thought I would share, but I don't want to be overwhelming with info. Blessings, Mary Lou
I wonder why noone has mentioned Spina Bifida. I have it and it is directly related to Chiari. I am fully aware that the pain is unbelievable. It leaves me on the couch for 1-3 mos. With a full mri or an x-ray. I would believe either would show a curvature of the spine. Which is Spina Bifida. Good luck it hurts like hell. It is worse for me than the headaches or neckackes. It is right in the center of your body and you just can't do anything without extreme pain. Good Luck and hope it is something else.
Send a message to Lori L. or Abby. They both know more about leg issues than I do. I have had my legs buckle because of pressure on the bottom of my Occipitial Lobe.
Wish I could help more,
Tracy Z.
I also have Spina Bifida Occulta and totally understand. By any chance are either of your parents
Vietnam Vets?
tamarack said:
I wonder why noone has mentioned Spina Bifida. I have it and it is directly related to Chiari. I am fully aware that the pain is unbelievable. It leaves me on the couch for 1-3 mos. With a full mri or an x-ray. I would believe either would show a curvature of the spine. Which is Spina Bifida. Good luck it hurts like hell. It is worse for me than the headaches or neckackes. It is right in the center of your body and you just can't do anything without extreme pain. Good Luck and hope it is something else.
In regards to the discussion on pain in my back. I think I posted something earlier. But I just want to share again. On my surgery that would have been a little under 10 years ago, they found that I had spina bifida occulta with my Chiari surgery. I found out this year with my second surgery, that was with a Chiari specialist, that Spina bifida occulta can be a common finding. It just meant that there was part of my vertebrae missing. Since that first surgery, I had low back pain on an off for years. Not knowing why. Even after going back to my previous NS, this was not being picked up. (I think that I have read every document on the internet to understand Tethered spinal cord syndrome.) Finally last year, I was finally diagnosed with this condition.
This past year I had to go for my second Chiari I surgery to get that fixed first. Then had to recooperate and see how I made out post op, then it was when I increased activity, like bending over, sitting for long periods, kneeling, etc. would trigger really severe low back pain, weakness in my legs, frequency with bladder issues. Please go to the Wisconsin Chiari website to read more info. I am not trying to diagnose anyone by any means. I am only sharing what I have been through. It is very important for folks to connect with a Chiari specialist. Everyone is different, but a Chiari specialist sees these symptoms all the time. I hope this info can be of some help. http://www.wichiaricenter.org/
God bless, Mary Lou
Actually having Spina Bifida Occulta that causes you to have CM is very rare. I have been researching this for years & sent out many inquiries trying to find people that have been diagnosed with both. Was either your parents or grandparents in the Vietnam War? I ask because Agent Orange (Dioxin) causes Spina Bifida and other congenital illnesses.
Mary Lou said:
In regards to the discussion on pain in my back. I think I posted something earlier. But I just want to share again. On my surgery that would have been a little under 10 years ago, they found that I had spina bifida occulta with my Chiari surgery. I found out this year with my second surgery, that was with a Chiari specialist, that Spina bifida occulta can be a common finding. It just meant that there was part of my vertebrae missing. Since that first surgery, I had low back pain on an off for years. Not knowing why. Even after going back to my previous NS, this was not being picked up. (I think that I have read every document on the internet to understand Tethered spinal cord syndrome.) Finally last year, I was finally diagnosed with this condition.
This past year I had to go for my second Chiari I surgery to get that fixed first. Then had to recooperate and see how I made out post op, then it was when I increased activity, like bending over, sitting for long periods, kneeling, etc. would trigger really severe low back pain, weakness in my legs, frequency with bladder issues. Please go to the Wisconsin Chiari website to read more info. I am not trying to diagnose anyone by any means. I am only sharing what I have been through. It is very important for folks to connect with a Chiari specialist. Everyone is different, but a Chiari specialist sees these symptoms all the time. I hope this info can be of some help. http://www.wichiaricenter.org/
God bless, Mary Lou
Spina Bifida Occulta is the most common of the three types of Spina Bifida. I am a strong supporter of Chiari Centers. My Neurosurgeon is Dr. Peter Jannetta. He is the Godfather of Neurosurgery & developed most current Neurosurgical techniques. A Chiari Center NS sent me to him,because he is the best. He is retired now & just doing research, but is still seeing me, because having Spina Bifida & CM and everything it brings with it is very challenging to most Neurosurgeons, regardless where they practice. Please read my profile, maybe we will have more in common.
TracyZ said:
Actually having Spina Bifida Occulta that causes you to have CM is very rare. I have been researching this for years & sent out many inquiries trying to find people that have been diagnosed with both. Was either your parents or grandparents in the Vietnam War? I ask because Agent Orange (Dioxin) causes Spina Bifida and other congenital illnesses.
Mary Lou said:In regards to the discussion on pain in my back. I think I posted something earlier. But I just want to share again. On my surgery that would have been a little under 10 years ago, they found that I had spina bifida occulta with my Chiari surgery. I found out this year with my second surgery, that was with a Chiari specialist, that Spina bifida occulta can be a common finding. It just meant that there was part of my vertebrae missing. Since that first surgery, I had low back pain on an off for years. Not knowing why. Even after going back to my previous NS, this was not being picked up. (I think that I have read every document on the internet to understand Tethered spinal cord syndrome.) Finally last year, I was finally diagnosed with this condition.
This past year I had to go for my second Chiari I surgery to get that fixed first. Then had to recooperate and see how I made out post op, then it was when I increased activity, like bending over, sitting for long periods, kneeling, etc. would trigger really severe low back pain, weakness in my legs, frequency with bladder issues. Please go to the Wisconsin Chiari website to read more info. I am not trying to diagnose anyone by any means. I am only sharing what I have been through. It is very important for folks to connect with a Chiari specialist. Everyone is different, but a Chiari specialist sees these symptoms all the time. I hope this info can be of some help. http://www.wichiaricenter.org/
God bless, Mary Lou
It is really helpful to read what others are going through, or have been through too. Thanks Tracy for your helpful input here too. I will go and read more about you have been through too. Oh, someone mentioned about parents in Vietnam war and chemicals. My dad passed away 40 years ago and he suffered from several spinal problems. But that was way before MRI's. He was actually a hero in my life, because he suffered so much when I was younger. But he was the most compassionate person and father to me. I am forever grateful to him.
Oh, another thought. I am blessed that my mom is still alive. She has helped me very much and is one of my real angels in my life. She traveled with me out of town this year. Oh, the other thought is that I was born with club feet. Both of my feet were put into casts when I was born. My mom has explained this all to me. I do have flat feet. I do wear inserts in my shoes. The doctor told my mom that I would always have to wear supportive shoes. I think that I read that feet deformities also can go along with spinal deformities too. It has been a life long journey to find that my feet problems were actually linked to my brain and spinal issues. This site has been very helpful to me too. Thanks to everyone that shares. It is uplifting to hear what others have to go through too. Just know that you are all in my daily thoughts and prayers...ml
Hi TracyZ,
I have Spina Bifida and diagnosed with CM. My father was a Vietnam Vet as well (who died of an agent orange related cancer in '79). I have been trying so desperately to get VA to recognize my condition as a bi product of my father’s time in the military but to no avail. Were/are your parents Vietnam Vets? If so, have you pursued disability via VA?
Thanks in advance!