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
As you know I only have 2 from the VP shunt surgery anyway. One lucky charm on the back of my head and one at the bottom of my rib cage that is about an inch and a quarter long.
Holey moley. how many sticthes/staples do you have???
I agree it is strange how all the NSs do this surgery differently.
TJ
Loves sent your way
Britty Kae
Britty:
Thanks for the support. While there have been some unexpected "after shocks", I am feeling MUCH better. I do not have the pain and pressure, or the fatigue that I had prior to surgery. I know that getting the shunt was the right thing to do and I didn't think I would ever say that...but here I stand.
We'll see what the EEG has to say, I go tomorrow. Finally got the muscle relaxers tonight, but they almost seem to be making my "ticks" worse.
Jazzy:
Back to your earlier post (#11)...your right. I should have someone avalable to help me after surgery. This is where I am currently distressed and very upset with the OSU staff. Currently Dr. McGregor (NS) is out of town. His nurse said, "He was asked to do the surgery. He did it. He stitched you up. He saw you afterwards in the hospital...now he's done. He is a surgeon, he only handles the surgery." She was very nasty. Interestingly enough, I don't think Dr. McGregor would be happy with her. Dr. Katz' office is taking the stance that "Dr Katz is a NO, not a surgeon, nor a specialist on shunts. Therefore, while he is a specialist on PTC and can see how my eyesight is and or ask how my HA's have been affected...he can not help with post-surgical issues, for that I need to see Dr. McGregor." Meanwhile, my doctor in Rochester (Dr. Friedman) has been sending nasty-grams to Dr. Katz' office, because although se wasn't treating me in Rochester, she is upset that I have gone elsewhere for treatment. She is not returning my calls at all. So right now, I'm left hanging on a wire.
I have the EEG tomorrow, and I think Dr. McGregor is back next week. I will be calling everyday until I can speak with him. Once I do I will update you guys...but, in the meantime, I can't say I'm all that pleased with the folks whom I was so pleased with prior to my surgery.
Will keep you posted.
MM3
Today my husband got a letter for me via certified mail. It was from my neurologist in Rochester (Dr. Deborah Friedman) notifying me that because I had come to Ohio to see Dr. Katz and subsequently had shunt surgery she was dismissing me from her practice. She sent a copy to my PCP.
Really? How juvenile....What really gets me is that she had forgone mentioning that she wasn't getting me in to see her until May, that she had given me a 25 minute LP, that she didn't call me back for up to 5 days after I would call her and had left me without both pressure reducing medications and pain medications for over 2 months, leaving me no choice but to see Dr's. in Ohio for treatment. But...I'll include those facts in my response letter to her copying the Medical Bureau. WOW!
As I'm still going to need a doctor in Rochester, NY, I hope Dr. Katz and Dr. McGregor can refer someone. DOCTORS SUCK!!!
MM3
Your dr in Rochester sounds like a piece of work but I think I might have some insight. My mother's case of PTC (remember she and I both have it) is very complicated; she has an opening in a sinus cavity that leaks fluid and has been bounced around from dr to dr trying to get the situation sorted out. During the process she was told by someone that the rule in medicine is that the last doctor who has touched a patient is the responsible party...so basically it's a situation of "hot potato" and should something happen to that patient, or a detail get missed resulting in a misdiagnosis or worse, it is the LAST physician who touched the patient who is responsible.
So I think your Rochester doc saw the opportunity to pass her "hot potato" patient on to someone else, since you had already been touched by someone, and rather than allowing you to come back to her when potentially SHE could become liable for getting herself up to speed on your care in OH and assuming responsibility for what has been done to you there - she broke up with you. It is juvenile and you should definitely report the deficiencies in her care but I'm learning that with PTC, very few doctors are all that thrilled to have such complex cases land in their laps, unless PTC is of special interest to them like it is to your Dr Katz.
I am pretty sure since I missed 2 appointments that I'm not allowed to see him anymore, but please tell me how your experience with him has been.
Never: I know you have had bad experiences with Dr. Katz, and I'm so sorry about that. Fortunately for me, that has not been the case. He has treated me with respect and has listened carefully to what my concerns are and has spoken to me at length about PTC and my personal condition. I see him again on Tuesday, so I'll let you know how that visit turns out, post surgery.
Brooke: The incision on the top of my head is about a straight line about one and a half inches long, and it holds in my valve....and that sounds like the only difference. Thanks for sharing.
MM3
Talk about muddying the water. I told Laurie about what you are going thru and she told me that lately (read since surgery) I have a few spells of "the hebe jebees" many nights. She describes "hebe jebees" as jerking legs in the middle of the night. Hmmmmmmmm........
TJ
I think MM3 should send. A beautiful little Hallmark card inscribed, "If you love someone, set them free. If she doesn't return, it's becacuse she found a real doctoe who made her better."
It was great to see you, YOU LOOK MARVELOUS!
Bax
MM3
Sorry to hear your still having problems. I am a little behind because I havent been on in a while. As for incisions I had 3 one for the valve about 2 inches, one to connect tubing behind my ear ahout 1/2 inch and one on my upper abdomen about 3 inches. Sounds like your doctor needs some more practice tunneling the tubing since he had to make an extra incision on your chest..
Are you still having abdominal pain?
MM3 I hope you are feeling better, I didn't see what your latest test results were, are you sleeping better?