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...
I have to ask this question b/c this has been getting worse for me lately. I am just restating that my Opening Pressure was 50 and my Dr. gave me a shunt, but didn't open it yet b/c he cut my Bowel by accident during the procedure. My shunt will get finished and opened on Wednesday, but my brain fog has gotten terrible since he nicked my Bowel 3 weeks ago. My Bowels are healed now and I don't have an infection or anything.
The pressure in my head just seems higher and I have such trouble explaining this "Confusion" I call it. To be truly confused, I couldn't sit here and type this but it's so scary b/c it's so intense.
It's like every minute of the day, I have no "Clarity". If I'm talking to someone face to face, it's like everything is distorted. I see them clearly, but I am not focusing on them. I feel like I'm high in the twilight zone all the time now. It's amazing b/c my intelligence is 100% intact.
I know my pressure is maybe even higher b/c the Tinnitus is now constant and the back of my head at the base has so much pressure. My anxiety is always high, but it's even higher now with this Brain Fog confusion. If I do have any loud noises or my kids arn't listening, it does seem to get worse.
I'm also having internal tremors. At times, I would swear my head is shaking but you can't see it. I feel shaky in my arms and shoulders too. It's like everything is tight in all of my muscles.
Hard to believe when he opens this shunt, all of this will resolve. To me, it feels like brain damage b/c it's constant. When I lay flat, it does ease up a little bit.
I was driving before my surgery 3 weeks ago and now, I won't get behind the wheel b/c of what happened 2 days ago. My daughter had me pick up her girlfriend. She only lives 2 miles from me, but when I got in the car, I felt so strange while going to get her. I felt like I wasn't paying attention to the road and my anxiety went nuts. I quickly came back to the house and started crying up in my office. I told my Dr. about all of this and he keeps telling me this is all of the pressure and that after he opens the shunt on Wednesday, this should all resolve immediately.
Yet, when I search the threads on here, I don't see anyone reporting the brain fog to the extent I'm having it.
I know he had to hold me off b/c he nicked my bowel and was worried about my Fecal Matter getting into the shunt and giving me a brain infection, but I don't understand why he didn't put the shunt to an external drain until the bowel healed. Wouldn't this risk permanent damage ? I keep thinking it it were my heart, certainly they would put in a stent, so why not protect my brain ?
I need this nightmare to be over ! Sorry if I seem like I'm venting. I am so amazed at how the medical literature is so lacking with regards to symptoms. The questionnaire that was put together on here with symptoms needs to get to the Neuro Surgeons.
I'll update the group after Wednesday on my progress.. Thanks everyone !
The pressure in my head just seems higher and I have such trouble explaining this "Confusion" I call it. To be truly confused, I couldn't sit here and type this but it's so scary b/c it's so intense.
It's like every minute of the day, I have no "Clarity". If I'm talking to someone face to face, it's like everything is distorted. I see them clearly, but I am not focusing on them. I feel like I'm high in the twilight zone all the time now. It's amazing b/c my intelligence is 100% intact.
I know my pressure is maybe even higher b/c the Tinnitus is now constant and the back of my head at the base has so much pressure. My anxiety is always high, but it's even higher now with this Brain Fog confusion. If I do have any loud noises or my kids arn't listening, it does seem to get worse.
I'm also having internal tremors. At times, I would swear my head is shaking but you can't see it. I feel shaky in my arms and shoulders too. It's like everything is tight in all of my muscles.
Hard to believe when he opens this shunt, all of this will resolve. To me, it feels like brain damage b/c it's constant. When I lay flat, it does ease up a little bit.
I was driving before my surgery 3 weeks ago and now, I won't get behind the wheel b/c of what happened 2 days ago. My daughter had me pick up her girlfriend. She only lives 2 miles from me, but when I got in the car, I felt so strange while going to get her. I felt like I wasn't paying attention to the road and my anxiety went nuts. I quickly came back to the house and started crying up in my office. I told my Dr. about all of this and he keeps telling me this is all of the pressure and that after he opens the shunt on Wednesday, this should all resolve immediately.
Yet, when I search the threads on here, I don't see anyone reporting the brain fog to the extent I'm having it.
I know he had to hold me off b/c he nicked my bowel and was worried about my Fecal Matter getting into the shunt and giving me a brain infection, but I don't understand why he didn't put the shunt to an external drain until the bowel healed. Wouldn't this risk permanent damage ? I keep thinking it it were my heart, certainly they would put in a stent, so why not protect my brain ?
I need this nightmare to be over ! Sorry if I seem like I'm venting. I am so amazed at how the medical literature is so lacking with regards to symptoms. The questionnaire that was put together on here with symptoms needs to get to the Neuro Surgeons.
I'll update the group after Wednesday on my progress.. Thanks everyone !
Wishing you all the best with your upcoming shunt opening, good luck!