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 am still just...not sure how to feel about this yet...so I will just share it with y'all, I suppose.
A few things happened. My seizure meds were switched around. No actual medication changes, just the way I take them and my Topamax was increased at night by 50mg (which I was going to ask anyhow). This was during the first appointment in the morning with the Epilepsy doctor. I had two appointments yesterday. One with him and one with my neurologist. Anyhow. He did his testing. He wanted to ask me about my seizures (I don't know much about them because I am completely out of it when they happen) but I do know that I wet myself, the teeth grinding, the biting my tongue, the bleeding and foaming from my mouth, the sore muscles. But anyhow...he drew labs to check both of medication levels and then sent me over for my EEG, but I didn't get my EEG results back yesterday...that is killing me. I know they are looking for the cause...but I won't know exactly what they found for a little...
So afterward, it was just a little while until my next appointment. My first was at 9:45, second was at 1:00. We spent the whole day at Hopkins, basically. So glad Stephanie was with me. Anyhow...then when I saw my neurologist, when my vitals were taken, I found out I am now at 191 pounds. I am ALMOST under 190!!!! I am so excited for that. And when my neurologist saw me, the first thing he said was, "You look like you've lost weight!" I asked him what it was when he last saw me...he pulled it up in his computer...I have lost 20 pounds since November when he last saw me. So exciting!
He then told me that what they were FIRSTLY looking for on the EEG is if the seizures are coming from the shunt. If this is the case, they will have to remove it. You all can understand how devestated I was to hear this. He did not say it without sensitivity, not at all. But me, being my normal strong self, I held it together until I got into the car. He said that since I am on anti-seizure medications that are not stopping them, they would need to remove it. They can place another on the left. I said, "but my hair! I worked so hard to get it back here!" (as a joke...I had to joke, or I was going to cry) and he said, "I know you did" and then I said, "couldn't you just wiggle it around a little bit?!" and he laughed and smiled a little. So we shall see...
I am TERRIFIED of having my shunt removed...I just couldn't go through that pain again...
So...I am not in a great place right now. :(
That was MY day yesterday.
Hope y'all are doing well.
A few things happened. My seizure meds were switched around. No actual medication changes, just the way I take them and my Topamax was increased at night by 50mg (which I was going to ask anyhow). This was during the first appointment in the morning with the Epilepsy doctor. I had two appointments yesterday. One with him and one with my neurologist. Anyhow. He did his testing. He wanted to ask me about my seizures (I don't know much about them because I am completely out of it when they happen) but I do know that I wet myself, the teeth grinding, the biting my tongue, the bleeding and foaming from my mouth, the sore muscles. But anyhow...he drew labs to check both of medication levels and then sent me over for my EEG, but I didn't get my EEG results back yesterday...that is killing me. I know they are looking for the cause...but I won't know exactly what they found for a little...
So afterward, it was just a little while until my next appointment. My first was at 9:45, second was at 1:00. We spent the whole day at Hopkins, basically. So glad Stephanie was with me. Anyhow...then when I saw my neurologist, when my vitals were taken, I found out I am now at 191 pounds. I am ALMOST under 190!!!! I am so excited for that. And when my neurologist saw me, the first thing he said was, "You look like you've lost weight!" I asked him what it was when he last saw me...he pulled it up in his computer...I have lost 20 pounds since November when he last saw me. So exciting!
He then told me that what they were FIRSTLY looking for on the EEG is if the seizures are coming from the shunt. If this is the case, they will have to remove it. You all can understand how devestated I was to hear this. He did not say it without sensitivity, not at all. But me, being my normal strong self, I held it together until I got into the car. He said that since I am on anti-seizure medications that are not stopping them, they would need to remove it. They can place another on the left. I said, "but my hair! I worked so hard to get it back here!" (as a joke...I had to joke, or I was going to cry) and he said, "I know you did" and then I said, "couldn't you just wiggle it around a little bit?!" and he laughed and smiled a little. So we shall see...
I am TERRIFIED of having my shunt removed...I just couldn't go through that pain again...
So...I am not in a great place right now. :(
That was MY day yesterday.
Hope y'all are doing well.
So sorry you had a rough day yesterday. That is never easy. Doctor's appointments can be quite exhausting emotionally, and you never if you are going to leave smiling or crying. Keep us updated with how things progress.
Thinking of you,
Mallory
But the shunt being removed and that pain coming back? That terrifies me...
Mallory, can you message me on Facebook in a little? I would like to talk to you about a few things. Thanks girl.