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
So sorry to read about your tough recovery and these strange side effects. I don't have anything to say (for the first time ever, lol) but maybe an email to the IHRF to see if they have heard of this and/or can provide some insight.
I don't recall my NS saying anything about potential side effects like what you have but my Neuro was always talking about how some meds could cause seizures. Is there anyway you can get yourself off all the meds to see if that is part or all of the problem?
OK I lied I did figure out somthing to say. I guess I always start jumping into my engineering trouble shooting mode and start looking at what has changed? Have you taken those meds at that dosage in the past with out these side effects? Those are pretty potent pain killers and are combining 2 of them. Who knows what they might be telling your body to do. Have you ever experienced siezure like symptoms prior to the shunt surgery?
I wish you the best figuring this out. For me, I hate to take any drugs and have always tried to get off everything as fast as I could after all of my surgeries. If you stop your pain meds, maybe you could try one of those Long Island Ice Teas to put you to sleep. ar ar ar. Or maybe talk to Bax and she can use her newly aquired hypnotic talent.
Give Mr. MM3 a hug and a kiss for supporting you and a big thanks from all of us for keeping us informed while you we in the hospital. And glad you are at least feeling good enough to post. By the way I didn't notice any slurring in the post so if no one can see it you must not have anything wrong, isn't that how PTC works? lol
Oh well. I know recovery is rough and how hard it is to deal with when things go wrong so it is important not to let it get you down. Stay positive, keep fighting, and get better!
TJ
I just did a little quickie research and difficulty sleeping and seizures are potential side effects of Dilaudid. You might wants to do a little research if you haven't already.
TJ
So sorry you have to now deal with this. I have an lp shunt but after my surgery my body was doing what you are describing. However it only did it for a few weeks and then it did stop. I was worried something was wrong. My NS also told me it was normal. However you sounds to have it more seveirely than I did. I hope they are able to figure things out for you. I know you just want it all to be better and get back to normal life. Hang in there. I hope it is just a side effect from the meds you are on and they can fix it for you quickly. My prayers go out to you and your family.
Oh and after the vp shunt surgery and a lil after the 1st revision of it a month later I did have the jerking feeling and some really strange feelings and I wasn't on pain meds the whole time. I've never had a seizure but besides from the jerking I had weird feelings in my head and I was afraid to sleep at times and I actually feared that I was going to have a seizure. But the jerking did get worse once I was asleep I think because sometimes it'd wake me up. I've acquired horrible anxiety thru all this so I was really scared but I never got an answer from the dr. besides not to worry about it and it'd go away with time. And sure enough it has.
I hope you get everything figured out and I hope and pray things go more smoothly for you.
ok, i didn't mean to read your post and im not what if'ing but how are you doing now, is it settling, is it only in the evening, can you still drive, did the rest of you have trouble day to day till it went away, would valium lessen the effect and were all that got it on dilaudid or just different drugs each, i just wondering how long i would need to get help in with kids if it happened i would hate to forget where i put the kids or something lol and i need to have a driver for my daughter if she get real sick
I'm sorry this is so scary for you. Take a breath, and try to be confident that it will be okay.
You have been through so much. I think it's good advice about the meds for pain....since the HAs are gone, maybe you could stop the oxycontin - is that the breakthrough med for Dilaudid?? Did they say you 'could' take as breakthru if required, or did they say to take every 8 hours regardless??
Wishing you the best...don't get discouraged.... sounds like the shunt surgery went well and the HAs are gone!
Judie
Oh I'm so sorry you are going through so much and hope you are feeling better soon.
When you kind hubby was updating us all I was thinking you were having seizures along with at first over medication from dilaudid and then withdrawing from it since I know you were on it before the shunt was considered since it was the only thing that slighty helped you pain...also oxycontin is a very strong drug so the combo of the two makes me wonder.
You are always in my prayers and I really hope you climb out of that darn rabbit hole and have tea with me, Jazzy
I'm also having a good deal of pain in my right lower abdomen and near my right hip. It's a stabbing pain that when it occurs, stops me in my tracks. Last night I had a fever of 99.3, which is either low grade, or possibly my thermometer wasn't working accurately and it was higher. God knows I felt warm.
Today my spirits are down a bit. Feeling depressed and missing my family. My doctors left a message yesterday saying that they called in muscle relaxers to the pharmacy...but, the pharmacy says they never got the call. Tried to call the doctors office today, but they are closed for the "holiday".
Not having much luck today. Hope you all are having a better day.
MM3
I have had these jump feelings prior to falling asleep for years now. It feels almost as though you were falling and then your whole body jolts? I have been told this is normal, but the memory loss and slurred speech would definitely concern me. I'm glad you're getting a little more sleep and I hope those feelings start to go away.
Also, my taste buds have changed. Food tastes horrible to me now. I don't like anything. Have any of you had this experience???
MM3