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,
After my programmable LP shunt surgery I woke up in my hospital room with sharp stabbing intermittent pains in my left lower abd. quadrant and also in my left shoulder area (more the scapula area). I thought maybe it was gas from the anethesia slowing things down and the shoulder from them laying me on that side for over two hours.
2 weeks after surgery and I still had the pain(s). I asked my NS if the llQ pain was from the shunt or it draining and he said that no way was it from the shunt.it was too low and he suggested I might have diverticulis.
Now 5 weeks later the pain is now almost constant. Saw my gyno (sorry men) who got me an ultrasound since I thought it was my ovary.
Just came home from ultrasound and the radiologist saw some fluid and said it was from the shunt, but in no way was it causing my pain, that she had seen that often with people who have shunts. She said I would have to see the Dr. again to figure out what is going on.
I think it is very weird that I've never had this pain before and i woke up from surgery with it, if it is a coincidence then it's a 1 in a million chance Doc. (sorry had to quote Seinfeld when George's father slipped and fell on a pasta scuplture that Kramer had made and it went in his bum,lol)
thanks for letting me vent, I'm so confused, Jazzy
After my programmable LP shunt surgery I woke up in my hospital room with sharp stabbing intermittent pains in my left lower abd. quadrant and also in my left shoulder area (more the scapula area). I thought maybe it was gas from the anethesia slowing things down and the shoulder from them laying me on that side for over two hours.
2 weeks after surgery and I still had the pain(s). I asked my NS if the llQ pain was from the shunt or it draining and he said that no way was it from the shunt.it was too low and he suggested I might have diverticulis.
Now 5 weeks later the pain is now almost constant. Saw my gyno (sorry men) who got me an ultrasound since I thought it was my ovary.
Just came home from ultrasound and the radiologist saw some fluid and said it was from the shunt, but in no way was it causing my pain, that she had seen that often with people who have shunts. She said I would have to see the Dr. again to figure out what is going on.
I think it is very weird that I've never had this pain before and i woke up from surgery with it, if it is a coincidence then it's a 1 in a million chance Doc. (sorry had to quote Seinfeld when George's father slipped and fell on a pasta scuplture that Kramer had made and it went in his bum,lol)
thanks for letting me vent, I'm so confused, Jazzy
It may not be a psuedocyst but it sure sound like it. Initially my pain came and went but in the end it was constant. If it is a pseudocyst its not gonna go away and the pain is gonna get worse. As with everything we go through my only advise is keep going to the doctor and give them hell until they fix it.
I'm so sorry. You need a break. We need crash test dummies to feel it for us or voodoo dolls to put it all into or something. I hope you get some answers soon.
Bax
I hope you get some answers and are feeling better soon. I'm sending big mushy hugs your way.
MM3
After I read your other post I asked the radiologist if it could be a pseudocyst and she got her panties all tied up in a bunch, lol. Wanted to know who said that and why. I told her it was just research that I did online and she pooh-poohed it saying what she said above.
My NS pissed me off since he REFUSED to do an ultrasound or an x-ray saying in no way it was the shunt so that is why I am going Dr. to Dr. on my own.
My husband thinks if I tell these other Dr's that it happened right after my LP shunt surgery they will just refer me back to my NS stating it is his problem to deal with and he won't do anything. At least my gyno took me seriously and ordered the gyno ultrasound. the radiologist also suggested it might be diverticulosis, yada, yada, yada
I can understand my scapular pain if I was postioned with my shoulder back when I was on my side, it is intermittent pain but when I get it, it is severe.
Can I ask what test they did that they argued over whether it was the fluid or not causing your pain?
thanks for your help, I'll keep trying to move mountains to get to the bottom of this.
Blessings, Jazzy
Yes, one step forward two steps back is what I'm going to change my name too, lol.
I think Dr's should be our test crash dummies and experince what we experience, I bet they'd tend not to dismiss options so easily.
thanks for the mushy hug MM3, yeah I find it very weird that I had this right after surgery, but of course it couldn't be from the surgery (gee, I've heard that before). I'm seeing, again, my PCP's NP who is really great, tomorrow, who first told me it must be a muscle spasm, though he was nice enough to explain that he has to look at the most simpliest explanation and if it doesn't go away look at the next possible cause. All I can say is "Dear Lord". I wish my NS would have done something but I will become the squeaky wheel, all 4 wheels if I have to, lol. Blessings, Jazzy
I'm hoping my PCP will order a CT scan though the ultrasound did show the small amount of fluid, but it was in between my colon? Something like that.
I doubt they will do contrast since it is now known that it not good for even transplanted kidneys...I had an MRI of my spine with contrast about 2 months ago and the tech at first refused to do it citing all of this research but she called the Dr. and then agreed to do it. Ay Caramba!
Can I ask where they found the fluid pockets?
Also, Beth, can I ask where your psuedocyst was..what organ it was affecting? thanks, just trying to get ideas about how this is affecting me.
Saw my NP and he is having me see my PCP tomorrow since he has no idea of what is going on, he still thinks it is a muscle issue, but it can't be since it has gotten prog. worse and not better. He didn't want to do a CT scan and I wish he would. Will keep you all updated, Blessings, Jazzy
Any news today? I was reading to see if there was but don't see any. If it is diverticultilis people commonly see a problem with certain foods, like any foods that have seeds in it (because there is an area of irritation in the colon that is making pouch like grooves) and they really hurt if something gets stuck in one of those pouches. It is treated by a change of diet for a while and medication. If if is untreated it could become a perforated bowel or chrohns disease, and neither is good choice. free air in the abd is not a good thing, usually means something is going on but what is the question. Keep on top of the Drs. Make sure you are heard. What does your husband think? Does he have a Dr that could look at your scans and see what it could be? I am not above calling in favors on the Dr because they would always owe me, so I am sure it is the same for your husband. Maybe?
Blessings, feel better soon. Karen
I may have spoke too soon. I had CT w/wo contrast all at the same time so I am not sure if the fluid pockets were visible on all or just some of the results.
They are in my lower left side of abdomen. There are still some there and they are a little painful but nothing like when they were much bigger. All total they pulled out over 1000cc from 3 different pockets. What is left are a handfull of smaller pockets. I have another CT next Tuesday to see if they have gotten any smaller.
Hi Karen,
I just saw my PCP today and he said that even a little fluid can cause irritation and pain so he is the first one to take me seriously. He said since it has been over a month and the pain is getting worse he is going to put in a call to my NS, otherwise he said if it had only been a week or if I felt the pain was getting better than he would think it would eventually absorb.
He didn't think it was my bowels or diverticulitis since no fever, and the fact that I'm doing okay with bathroom stuff (I know, TMI). Or that it was muscular since he moved my hips and left leg all around. Plus, he said since it happened right after I woke up from surgery he was not going to send me to another specialist until we see what my NS says.
So...my husband is going with me to see my NS next week. He has more pull than I do. He does talk to the surgeons he works with, but very casually, asking if they think they know what is going on. So hopefully all of the sudden it will reabsorb before next tues, lol. thanks for thinking of me and your suggestions! your steel toed boot friend (to kick Dr's butt's) Jazzy