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 all:
Following up on my dear husbands journal entry....I have fallen into the rabbit hole and some strange things are going on.
As many of you know, I had the VP Shunt surgery last Tuesday. I was pretty miserable when I went in, as I had pulled a muscle that morning and after a pretty nasty PTC attack the Thursday prior...had been in the hospital for about a week prior to surgery. For that week prior, I had been on IV Dilaudid, and some other meds for PTC pain. The morning of surgery I had pulled a muscle in my upper left neck area and the docs prescribed a shot of Flexeril to help me relax. I was under anesthesia for almost three hours as the shunt was being placed.
When I came out of surgery I felt great. No more HA, no more pressure...just great. Of course I was a little sore in my belly from the tubing, and I looked ridiculous. (Huge triangle of hair missing from the right side of my head.) But, of course vanity has no purpose here.
That evening, however, I had trouble sleeping. A couple of times, my body jerked as if I was falling...but, I wasn't. In the days following, this sensation occurred several times. I told the neurosurgeon about this and he said that it was normal, and to expect this for approx. 3 more weeks. Saturday afternoon I was released from the hospital with a pain regimen of 4 mgs. of Dilaudid once every 4 hours, and a 40 mg. capsule of Oxycontin every 8 hours for pain control. And, that's it folks.
BUT...the symptoms have progressed. Now, at nighttime, my entire body rigidly jerks 3 or 4 times in an hour, with smaller muscle spams the rest of the time. I haven't slept now for three days. Those symptoms have now progressed to memory loss. My short term memory is almost completely non-existent. I've noticed that during the daytime, just prior to these "spells", I become very tired and my speech becomes slurred. Additionally I feel very confused about what I'm trying to say. If someone is speaking to me, I eventually block out the conversation and "disappear", which then leads to one of these "attacks."
My surgeon has gone out of town, and I'm not getting much assistance from his staff. I'm afraid to sleep alone at night, because I think I'm having seizures and I am worried that as these seizures progressively worsen that I could hurt myself.
I am scheduled for an EEG on Friday, which I hope will provide some information. I am hoping that while the shunt may have helped with the PTC...I haven't signed up for a new group of problems.
So tired.
MM3
Following up on my dear husbands journal entry....I have fallen into the rabbit hole and some strange things are going on.
As many of you know, I had the VP Shunt surgery last Tuesday. I was pretty miserable when I went in, as I had pulled a muscle that morning and after a pretty nasty PTC attack the Thursday prior...had been in the hospital for about a week prior to surgery. For that week prior, I had been on IV Dilaudid, and some other meds for PTC pain. The morning of surgery I had pulled a muscle in my upper left neck area and the docs prescribed a shot of Flexeril to help me relax. I was under anesthesia for almost three hours as the shunt was being placed.
When I came out of surgery I felt great. No more HA, no more pressure...just great. Of course I was a little sore in my belly from the tubing, and I looked ridiculous. (Huge triangle of hair missing from the right side of my head.) But, of course vanity has no purpose here.
That evening, however, I had trouble sleeping. A couple of times, my body jerked as if I was falling...but, I wasn't. In the days following, this sensation occurred several times. I told the neurosurgeon about this and he said that it was normal, and to expect this for approx. 3 more weeks. Saturday afternoon I was released from the hospital with a pain regimen of 4 mgs. of Dilaudid once every 4 hours, and a 40 mg. capsule of Oxycontin every 8 hours for pain control. And, that's it folks.
BUT...the symptoms have progressed. Now, at nighttime, my entire body rigidly jerks 3 or 4 times in an hour, with smaller muscle spams the rest of the time. I haven't slept now for three days. Those symptoms have now progressed to memory loss. My short term memory is almost completely non-existent. I've noticed that during the daytime, just prior to these "spells", I become very tired and my speech becomes slurred. Additionally I feel very confused about what I'm trying to say. If someone is speaking to me, I eventually block out the conversation and "disappear", which then leads to one of these "attacks."
My surgeon has gone out of town, and I'm not getting much assistance from his staff. I'm afraid to sleep alone at night, because I think I'm having seizures and I am worried that as these seizures progressively worsen that I could hurt myself.
I am scheduled for an EEG on Friday, which I hope will provide some information. I am hoping that while the shunt may have helped with the PTC...I haven't signed up for a new group of problems.
So tired.
MM3
Monday I didn't wake up until 2 p.m. (unusual), and once I was up I found that I had horrible head and neck pain. By Monday evening I began vomiting. I was running a low grade temp of 99.5. Tuesday, the nausea, malaise and pain continued. As I had an existing appointment scheduled with Dr. Katz I went to see him. After seeing me, he made the decision to send me to the ER to be looked at by NS. He believed that I was suffering from a low pressure HA and felt that my shunt needed adjusted. In the ER, I was admitted for 24 hour observation, given fluids (both because I hadn't eaten or drank much for several days and was a bit dehydrated, but also to help with the HA), and to have my shunt adjusted. While there I also complained of the sharp abdominal pain that I have been suffering from. I was told that my body is just adjusting to this new "thing" in my body cavity, and the pain will eventually go away. What I noticed was that after my shunt was adjusted from 10 to 15, I suddenly began having terrible stabbing stomach pains within approx. 30 to 45 minutes after the shunt was adjusted. The NS says that this pain will eventually dissipate...but, I 'm not so sure. We'll see....
MM3
I haven't had time to read many posts lately. I have been so busy and my burns kept me off the computer because my hands were burned. I am so sorry to hear that you aren't feeling well and having a time with the shunt. That is what I am very scared of it, myself. I was supposed to ahve a spinal tap months ago and still haven't had one. I tend to put things off until I cannot take it any longer. I will keep you in my prayers and I hope and pray you get better...fast!
I am glad it wasn't seizures, but the feelings you are having have to be as bad when you feel the way you do.
Stay brave and get better!