Hi everyone! 
I think I haven't posted here since I was freaking out about my VP shunt . I'm sorry I haven't been a good member :(. I had my vp fitted in march, have had 2 revisions since (27 june & 27 juli ) . I am currently on a holiday because I had been in the hospital all month and really needed a break, I was so exhausted! (after the last surgery I had a roommate from hell who kept me up all night and had visitors all day from 7am!). 
Anyway, my shunt still isn't draining and we're starting to come to the conclusion that it's not working because my ventricles are too small, which means it's not going to work either .  So I'm probably going to have a LP shunt implanted sometime next week. The doctors at my hospital say they have rarely done one before because they consider it to be an ancient, inferior method, but it took me a long time to find doctors who even took me seriously so I'm sticking with them:). I haven't had this one before so I'm scared and have a few questions, I'd feel better having a better idea what to expect, so, I thought I'd ask you guys! Here it goes:


- How long was your hospital stay? (I know it varies, but I'd still like to know;)

- Were you allowed to lie on your back or only the side the shunt wasn't on?

- Did you have two incisions (back and belly), or also one on your hip?

- How soon after the surgery could you stand up and walk a bit?
(I'm dreading not being able to use the bathroom after surgery, because for some reason I can't use a chamberpot and I hate the idea of a catheter.)

- How soon did it start working (if it did)? Immediately, or after a few days, weeks, months?


Thank you so much for taking the time to read (and hopefully answer), it really makes a difference.

Oh no, I'm so sorry the VP Shunt didn't work! They usually check viability of ventricle prior to surgery, but maybe scans weren't clear. I can't believe you had 3 surgeries before they figured it out though, that sucks!!!

I had my LP Shunt implanted in 2002 because they had just started experimenting with VP Shunt for IIH and I had it until switch to VP Shunt in 2015. I did have revisions every 2-3 years, but for some reason my system kept overdraining no matter what type of valve they added. That's why I ended up with a VP Shunt. Anyway, I'll share what I remember.

First, I had been sick, undiagnosed, had multiple health concerns, and was unable to work for years prior to the LP Shunt, so my experience was probably different. I ended up in the hospital for 5 days following the surgery because I had seizures following the implant. The surgeon said I lost too much CSF too quickly, so they had to give me caffeine IV's to help with symptoms until CSF replenished.. I have never heard any other member mention such problems. I think the average stay is a couple days, but varies by person and outcome.

I noticed improvement with my IIH symptoms right away (vision improved, tinnitus gone, less of a headache, etc). I had a small incision on my spine and a few on my side/abdomen. They were mostly small laparoscopy incisions, but feel like one was a couple inches (remember that was also 15 years ago). I feel like they tried to get me up the 1st time I had to urinate. I made it to the bathroom and did fine until I laid down..that's when the seizures started. They didn't get me up again until I had the IV's and could tolerate raising the head of my bed, etc. All of my specialists said they was unique situation, so definitely shouldn't expect it. My abdomen was more sore than VP Shunt, but with the VP I felt like the soreness was mostly in my neck and chest. It's basically from the catheter placement, so I think it's similar discomfort. I was really freaked out about the spinal portion of the surgery, but don't remember that part of the recovery being bad at all and no different than I felt about the brain portion of the VP placement. Recovery was the typical 4-6 weeks, but I think they told me it could take several months for my body to completely adjust to new levels and up to a year to heal. That's what they told me for VP Shunt too, so not sure much has changed there.

I hope this helps because I really don't remember much more! lol..feel free to post any questions and I'll do my best to answer them.

Take care, and definitely keep us posted!
Julie

Hey Julie,

Thanks for posting, it really does help!
I have also been sick for a long time and had to drop out of school in 2015 (I was 15 at the time), and also have other health concerns that keep going undiagnosed (very fragile skin; joint pain; irregular, and now absent menstrual cycle, that sort of thing...) I've had problems with low pressure before, right after my first VP surgery, and after my last lumbar puncture I couldn't sit up for a week, so your story does worry me a little, especially since my mom tells me she has heard it a couple times before (she spends a lot of time in facebook groups about IIH). I'll just have to wait and see.  

I've been worried the most about the spinal portion of the surgery, so it really helps to hear that it wasn't as bad as expected for you

It took a long time for them to figure it out simply because they hadn't seen it before. They don't get a lot of IIH patients, I don't think anyone does though. I'm dutch, but I'm being treated in Germany because in the Netherlands nobody would take my IIH seriously (I have the slow type, not the quick/really high pressure type). The surgeon that usually comes to talk to me said he had never seen a case in which a VP didn't work and an LP was needed! He is the youngest in the team, but still...

I'll just have to hope everything goes smoothly, that's all there is to do really

All the best,
Jolijn (It's dutch, don't worry about how to prenounce it;)

Sorry it's been such an ordeal, Jolijn. I hope this surgery and shunt works out much better!!!

Please let us know..