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...
Hey Guys,
Hope you are all doing well. I think I have written on here before about this pain that I get in my right side. It started 8 months ago, and I went to talk to my new neurosurgeon (I had to move back home with my family). He said I was fine and nothing to worry about. Quickest appointment in my life in and our within 3 minutes.... I was disappointed. The pain still was happening and it was moving lower and lower into the pelvis area. I finally went to the gynecologist and she wanted to do a transvaginal ultrasound. I did that and she found a 5 cm sac of fluid that was not attached to anything in between my uterus and bladder. She had me go to a CT Scan and it confirmed it. It also showed though that the shunt tip was very close to the sac of fluid.
Now I had just been to my surgeon again and said I was still having the pain and he said I was fine it was more than likely a female issue. My gyno is telling me that no its not and she called my surgeon and talked with his nurse. I go on Wednesday to the surgeon again. I'm just at a loss for what to do. Do you think that the shunt tip might be infected and has caused an abcess or something? I'm so discouraged and sick of the pain. I can't last that much longer with it honestly.
I would love to know what you all think or if anyone has had this problem. Thanks!
Sarah
Hope you are all doing well. I think I have written on here before about this pain that I get in my right side. It started 8 months ago, and I went to talk to my new neurosurgeon (I had to move back home with my family). He said I was fine and nothing to worry about. Quickest appointment in my life in and our within 3 minutes.... I was disappointed. The pain still was happening and it was moving lower and lower into the pelvis area. I finally went to the gynecologist and she wanted to do a transvaginal ultrasound. I did that and she found a 5 cm sac of fluid that was not attached to anything in between my uterus and bladder. She had me go to a CT Scan and it confirmed it. It also showed though that the shunt tip was very close to the sac of fluid.
Now I had just been to my surgeon again and said I was still having the pain and he said I was fine it was more than likely a female issue. My gyno is telling me that no its not and she called my surgeon and talked with his nurse. I go on Wednesday to the surgeon again. I'm just at a loss for what to do. Do you think that the shunt tip might be infected and has caused an abcess or something? I'm so discouraged and sick of the pain. I can't last that much longer with it honestly.
I would love to know what you all think or if anyone has had this problem. Thanks!
Sarah
Probably next move will be a shunt flow study and abd x-ray. Do you have decent pain control? Make him give you something if not.
Hope they make time for you Monday take it easy tomorrow. I like that you still smile, your whole face, even when you are in pain. Must light up the room.
If they have to do a revision does that mean they take the whole shunt out and replace it with a new one?
Thanks
Abcess not likely. If you had an abcess in your brain for 8 months then it wouldn't be an abcess. Nor and infection. Abcess and infections cause fevers and other body changes that are detectable but when it comes to being in the brain directly thing are magnified x100. So example: ear infection we treat that with ear drops and normal symptoms are fever, fussy baby, painful ear etc. infection in the brain.... Your body will complexly respond faster, the infection will spread quicker, you will/should show signs of neurological problems etc
I'm new to the shunts but what I have learned I could see and understand how a "pocket" could form and it would be based on the situation if intervention should take place. Since you are in pain then yes, I think an intervention should take place or at least more looking into the situation should happen.
If intervention is taken then they would more than likely replace the faulty part. If it was the actual shunt or the program device.
If you live in the St Louis area I can give you the name of a fabulous Neuro and NS who I work with in my ER.
Best of luck!
A different surgeon implanted the shunt? Is that right? That would explain the new NS brush off, they hate to deal with someone elses follow up.
I am hoping this can be handled without another neurosurgery.
Excision or repositioning of the shunt tip with minimally
invasive laparoscopic techniques is usually performed. This
technique in the setting of a noninfected pseudocyst has
proved to be safe, with results comparable to those of a conventional open surgical technique. If infection is present,
the pseudocyst wall should be excised and the peritoneal shunt
tube removed. Percutaneous drainage of the pseudocyst can be
both diagnostic and therapeutic.
If NS mentions replacing shunt ask about third ventriulostomy..if you haven't already considered this.
Yes I lived in NC and had a great team of doctors there but had to move home back to Indiana because I was so sick. But I haven't been so lucky to find any good doctors in Indianapolis. It sucks basically.
Thanks for all of your Help!
Sarah