Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hi Everyone ! It has been a long time since I have been on this support page. When I was first diagnosed with PTC 2009, I had just turned 50 years old. I was maybe about 20 pounds over my idea weight and overall was pretty healthy and fit. I had headaches, but they were not bad enough to send me to the hospital. The major concern, is I started to lose my sight in the right eye and that is what lead to my diagnosed of PTC. That was the beginning of my journey of trying to make since of why me. Finally, I am able to make sense and put the puzzle pieces together. I want to share this because I believe it will help someone else.
When I was about 4 yrs old, I took a hard fall off the bed and stopped breathing and CPR had to be done. I went to the hospital and all was good
Now I know all was not good. When I fell off the bed, I took a hard blow to the head and neck which I believe caused abnormal connections between the arteries and veins near the brain (DAVF). Along with breaking the Den in C2 vertebrae and fracturing the bottom of C2. In 2009 when I was diagnosed with PTC no one could tell me why. I took Diamox for a year, and every time I tried to get off, my pressure would increase. I finally opt to have a programmable shunt. Everything was good for about a year, than I started having headaches again, and feeling a lot of stress on my neck and shoulders. After a few more MRI's, X-rays, I was diagnosed with OS Odontoideum (broken vertebrae). They put two brackets in my neck to stabilize it. About 6 months after that surgery, I started to hear a pulsating sound in my head. It started out as a little squeaky sound than became very loud,
This is called a brute. After my MRI came out negative for any abnormalities, I had a cerebral angiography done which showed two abnormal connections between the arteries and veins(DAVF). It took then 7 and half hours to close out all the fistulas that was caused by the abnormal connections. After the surgery was over, the sound immediately disappeared. Not to long after that surgery, I started to have bad headaches every time I bent down or cough. This went on for almost a year, than after another series of MRI's I was diagnosed with Acquired Chiari Malformation of 1.5 cm.. Because of my past neck surgery, I am not a candidate for the Chiari surgery, but will be done if it is emergency required.
With all this said, I believe it was the DAVF that caused the intracranial pressure. If we would have been able to diagnosed it than, I would not be dealing with the Chiari. So if you were diagnosed with PTC, please research DAVF and talk to your doctor.
I am thankful for making the decision to have the lp shunt put in, because I don't believe the DAVF would have been diagnosed and I most likely would have stroked.
God is in control of my life, and felt the need to share.
God Bless ,
When I was about 4 yrs old, I took a hard fall off the bed and stopped breathing and CPR had to be done. I went to the hospital and all was good
Now I know all was not good. When I fell off the bed, I took a hard blow to the head and neck which I believe caused abnormal connections between the arteries and veins near the brain (DAVF). Along with breaking the Den in C2 vertebrae and fracturing the bottom of C2. In 2009 when I was diagnosed with PTC no one could tell me why. I took Diamox for a year, and every time I tried to get off, my pressure would increase. I finally opt to have a programmable shunt. Everything was good for about a year, than I started having headaches again, and feeling a lot of stress on my neck and shoulders. After a few more MRI's, X-rays, I was diagnosed with OS Odontoideum (broken vertebrae). They put two brackets in my neck to stabilize it. About 6 months after that surgery, I started to hear a pulsating sound in my head. It started out as a little squeaky sound than became very loud,
This is called a brute. After my MRI came out negative for any abnormalities, I had a cerebral angiography done which showed two abnormal connections between the arteries and veins(DAVF). It took then 7 and half hours to close out all the fistulas that was caused by the abnormal connections. After the surgery was over, the sound immediately disappeared. Not to long after that surgery, I started to have bad headaches every time I bent down or cough. This went on for almost a year, than after another series of MRI's I was diagnosed with Acquired Chiari Malformation of 1.5 cm.. Because of my past neck surgery, I am not a candidate for the Chiari surgery, but will be done if it is emergency required.
With all this said, I believe it was the DAVF that caused the intracranial pressure. If we would have been able to diagnosed it than, I would not be dealing with the Chiari. So if you were diagnosed with PTC, please research DAVF and talk to your doctor.
I am thankful for making the decision to have the lp shunt put in, because I don't believe the DAVF would have been diagnosed and I most likely would have stroked.
God is in control of my life, and felt the need to share.
God Bless ,
I guess the question is, if you had these malformations all your life, then why did it take until you were 50 for them to become clinically significant? did something happen to change your anatomy or the significance of this malformation on your ICP? was it just degenerative changes in your neck due to the old fracture, leading to a change in posture? but it's a lot easier to hold the head straight up on the neck, than it is to let it come forwards, as it appears you are forwards in your picture. the main thing that would cause a person to develop a forward head posture is an airway problem. the airway problem would produce obstructive sleep apnea, which would worsen at menopausal age, and can increase ICP. just something to think about. maybe there is still another factor in what triggered your illness to become manifest.
I hope this answers your questions.