Pseudotumor Cerebri Support Group

Hi Beth, I'm sorry you had to go through all of this again and hope you are feeling better in your recovery. You have been through to much!

I don't have a VP shunt or know of anyone with one that goes to their gallbladder or bladder..from what I researched on line they do this only if the heart (VA shunt) cannot be done, but that was just one article I read.

I think TJ, when he gets his new VP shunt, will have it going to his heart since he had that horrible time in the hospital with his obstructed bowel and the shunt infection...he is sure to know more about it.

You are in my prayers and I hope you feel better soon, Jazzy

Hi Beth,

Sounds like we are in the same boat. My VP shunt was removed 2 weeks ago due to infection and complications in my abdomen. I have similar scar tissue issues and am unable to absorb the CSF. I am waiting for abdominal surgery to get the rest of the fluid out once my infection is gone. Then we need to replace the shunt and I too am looking at a VA. And it scars the hell out of me too! I have not heard of gallbladder or bladder but will be doing more research on that subject.

Hopefully someone will answer your post that can help both of us understand more about it. If not I guess we are the guiney pigs.....ugh.

How bad was the recovery for your laproscopic abdomen surgery?

TJ

Beth/All:

Okay...maybe I'm just having a bad day and maybe I have no right to say so...but....

In my world, shunts are a nightmarish tool used by doctors to treat a condition that they don't seem to know much about. Much like using labotomy's (sp?) to treat depression at one time. I'm certain that 30 years from now (and hopefully it won't take that long) doctors will look back at shunts and wonder how the medical profession ever allowed such horrific tortures to be used to treat IIH patients.

That being said...Let's talk about success, shall we? How many IIH patients who have had shunts have had success? And by success I mean no more headaches, no complications and no need for additional surgeries??? I don't know for sure what the statistics are but I know they aren't good.

I also know that this isn't the most positive and uplifting thing I can say here. Certainly not the most supportive thing I can say on a support site and for that I am sorry. Especially, because I realize there are many of you who have no other choice but to get a shunt. (There may come a day when I am right there with you.) And, after I post this I won't say anything else about it.

But, now that I have....let's discuss the VA shunt. On what planet does it sound like a good idea to place a drain into your heart after it clearly has caused so many problems in your abdomen. You only have one heart, and last I checked it's a pretty important organ. What I am saying here may sound harsh but, from the sounds of it, I am not saying anything to you, TJ or anyone else that you haven't already thought.

Please know that my harsh concern stems from a place of goodness and love. I certainly wouldn't want you or anyone else to suffer any more than you already have. It is so frustrating to me that better treatments haven't been found yet. But, until they are...I just don't think this is the best way to go.

I encourage you to continue to do your research, speak with your doctors, and most importantly trust your gut. (No pun intended.) Pray about it. This is a big decision. Whatever you decide, I will be here to support you. I am so sorry you had to go through all that you have and I want nothing more than an easier path for you in the future. I will be praying for you as well. Hang in there.

MM3

Thanks all,
TJ my recovery from the laproscopy hasn't been too bad. The night after and the next morning I had severe right upper quadrant pain and shoulder pain which fraked me out. I thought maybe they had put the shunt in the wrong place and it was irritating my diaphram or something. I couldn't get any answers as to why I was hurting (but at least i got good pain meds). Finally the next day the surgeon told me that the inflate you abdomen with gas and sometimes it can get trapped between your liver and diaphram and cause severe pain but that it would reabsorb and the pain would go away. And it did. Other than that just some generalized soreness in my abdomen. Until this new pain that started Monday. I sorry to hear that you have to get a VA shunt. I would not have been so afraid of them if I had not had so much trouble with my VP shunt. I was lucky in that I did not have any infection like you did. I know that must have been awful.
MM3 I agree that shunts suck. I would not have gotten one but the meds weren't helping my papillededma enough. The swelling did go down some but my vision was not improving and I couldn't see well enough to drive and was afraid that I would lose my vision completely if I did not get the shunt. However I was not well informed about the possible complication. I had done homehealth for a teenage boy who had a shunt and he had had it for all his life. I went through one shunt revision with him but other than that he did very well with it. He had hydrocephalus. I had never even heard of getting a pseudocyst until I got one. I wish there were more treatment options for us. Or at least a few that cause so many complications and side effects.
Thanks for all of your support.

Beth, Thanks for the recovery info. I had actually experienced the air/gas pains right after my VP shunt surgery and they said the same thing. The pain was only for one day but boy did it hurt.

What is a pseudocyst???

MM3, Thanks for your candid words. You make many valid points. I too wish there was a better option. I will tell you that my shunt was working. This week is my first week with headaches in over 2 months. I am just now remembering what it feels like to have IIH. Although in those last 2 months I had the pleasure of learning what a whole host of other problems feel like…..ugh.

In defense of shunts and success. Thousands and thousands of people have shunts that are working. My NS alone does 5-10 a week. He is baffled by what happened to me. Remember also that DS is a small group of people that are most likely worse off than the average IIH sufferer and hence are seeking out help to put the pieces together. Just like many people will more freely complain than praise, many of the shunt stories here are not positive ones. But don’t forget there are positive shunt stories here. I am not saying that everyone should run out and get a shunt but if it saves your vision or in my case gives me back the quality of life I am accustomed to, then for me, it is worth the risk. And I will keep trying until we get it right because I refuse to live the rest of my life in debilitating pain and/or a freakin drug addict/ER junkie.

Aren’t you glad the feisty TJ is recovering well?

TJ

A pseudocyst is a collection of fluid that is similair to an actual cyst except it does not have a real wall around it. In my case (and people with vp shunts) it is caused when CSF is not reabsorbed by the abdomen. Sometimes it contains infection but in case it did not.

Then I must have a bunch of them. They drained the two biggest ones, 450 cc and 350 cc then they left the drain in another smaller one for 4 -5 days and it keep draining 20-50/day. I still have some small ones left that I will need surgery to get to.....ugh!

TJ- OMG that is a lot of fluid. IDK how much they removed this time but the first time it was 3 places and about 5cc each. I know I was in alot of pain with my tiny amount of fluid I can only imagine how much pain you must have been in. If they havent gotten it all out yet you must still be in alot of pain. Hope they get it out soon.

Yes, It was miserable. I looked pregnant. And yes it is still painfull but tolerable in most position, I still can not lay on my stomach.

I have a CT next Tuesday to see if they are getting smaller on there own (I doubt it). If not then we will set a surgery date.

Hoo boy. This really makes me wonder about a few things. Since I had my shunt put in, and then they adjusted the flow, I haven't been having the headaches. But, the abdominal pain/discomfort continues, and I can't help but wonder what may be causing it.
Granted I'm overweight, so have a tummy anyhow, but it's never stopped feeling distended since surgery. Also too, it's hard to lay on either side or belly, without having pain. I have an area like a knot on the left belly, and I think my daughter summed it up pretty good when she looked at it and said....geeze mom, it looks like you have a baby in there pushing it's head out.
I often feel like something is pushing against, or irritating my diaphragm, and have wondered if it's the tube.
And I have developed an infection in the belly incision, which is draining some pus, and the incision is trying to reopen. My belly is aboslutely miserable, and sometimes I get really sharp pains in it.
I'll be seeing my NS again this Friday, and hope to get whatever is going on resolved. Maybe?