I would have to say that my shunt was a sucess because it saved my vision. Before the shunt I couldn't see well enough to drive and now my vision is almost 20/20. However it has not been without compilcations. My headaches are not gone but are like a "normal" headache. I am able to function with as I did before the onset of my PTC which includes taking care of my family and working 60hrs a week. As I'm sure you saw in my previous post I have had a lot of abdominal complications but I had my shunt for almost a year before they started. I do a lot of complaining in my posts about my shunt and the abdominal problems I have had but I am very thankful to be able to see.
It is a difficult decision to make and you situation is different than mine but similar in that it is a quality of life issue.

well, its only been 6 weeks out but I consider it a success even though I have a small amount of fluid which is causing me pain that I'm seeing the NS for tomorrow. I don't feel as good as before I even got PTC, (at least not yet, don't know if thats perm. or not), but then again after a kidney transplant my energy was better but not like before I went on dialysis and then had the surgery.

I consider it a success, since I couldn't do anything (or so little) with the high pressure headaches and was in constant, severe, pain, plus it saved my eyesight. So for me it was worth it (the programmable LP shunt) over what it was like before.

I remember when at one time I thought I was going to get a VP shunt and I went on this other site and talked about my fears, and a couple of people, who normally don't post, wrote me about how they had a VP shunt and they were doing very well, one woman had mild headaches but she said that compared to what she was like before that was a blessing. But at the same time I have read of where people have had several VP shunt revisions. Of course we hear less of success stories since those people tend not to post.

It is a hard decision, mine was made easily because I didn't want to go blind. As with any medical issue and what can be done I think about quality of life. I was reading that the average life span of a shunt is 8-10 years but I have had Dr's tell me it can be more of less and varies among pt's.

Good luck with your decision, what ever you decide will be the right decision and you are in my thoughts and prayers, Jazzy

MM3,

I have been reading everyone's posts, but have not written lately. I had a VP shunt on July 14. I was able to get off all medication immediately after surgery. I have had no headaches since surgery. I also have had very little abdominal pain.

I was able to go back to work in 2 weeks. Recovery was better than I ever expected. I also have been able to sleep better than I had in over a year.

I wish I would have done it sooner as I have gotten much of my energy back.

Good luck on what ever your decision.

Karen

I have very, very mixed feelings about shunts these days. Prior to surgery, I tried to tell myself the same thing that Jazzy said - you never hear the success stories because those people are doing well and probably not posting as much, however now I'm not so sure. I believe it was one of my doctors that told me that he'd never recommend a shunt for headaches alone, because so many PTC patients suffer from a wide variety of headaches and the shunt obviously won't help them all. So if headaches are your primary reason, I would really, seriously think long and hard about it.

I've been having daily headaches sometimes every bit as severe as I'd had prior to getting the shunt, and lately I feel just as tired and rundown as ever. For a brief moment I had thought things were getting better, but it appears not to be so. Little things like coughing, sneezing, bending over, yelling (oh my gosh, especially that!) cause UNREAL pain. So, not only am I back to square one with that, I'm dealing with all of the abdominal issues as well. Even on the days when I'm not having sharp shooting pains or cramping, I often feel sick to my stomach (hey, I'm losing a ton of weight though because it's hard to eat!). I read somewhere that the CSF draining into the abdominal cavity is very acid forming, which makes perfect sense given the way I feel most of the time. Also, as I learned yesterday, the CSF can be very irritating to your internal organs (bowel irritation can cause constipation, for example, which is apparently not uncommon).

Any Google search will tell you that intra-abdominal complications are fairly common with VP shunts. Look at TJ's experience, Liz's, Greenbay's, my own...my goodness, that seems pretty darn negative when you think about it! The distal end of the shunt tube is long and thin (it looks like a piece of spaghetti on x-rays!) and has plenty of room to float around and get wrapped up where it shouldn't.

Anyway, I hadn't intended for this to sound quite so negative, but please do consider it very, very carefully. Even if you do get SOME headache relief, you might be signing up for a host of new problems. My doctor hyped up shunts so much before surgery, but I'm now inclined to agree with his partner that I spoke to yesterday - shunts are really kind of a stab in the dark (as with every other course of treatment for PTC). They hope that the shunt will work, but are not AT ALL surprised when it doesn't. It's a gamble I suppose - maybe you'll be one of the lucky ones, and maybe not.

Hi Ks, was wondering if your headaches are back if you need a shunt adjustment? Forgive me if you have all ready done that or have talked about, but I can't remember. I'm going for another adjustment tomorrow. Last time I did it, it was amazing how the next day I was doing better, amazing.

MM3,
KS has some good points, but I do think people who have success don't go on places like this so much, why would they? I did't until I had problems and didn't know where turn and did a search. I've had a successfull kidney transplant and I haven't joined any site. So anyway, everyone's experience is diff, I would just research the heck out of it for facts to help your decision. If you want stats I'm sure the IHR foundation will have them for you. Blessings, Jazz

ps. thank you Buddy for your post about a successfull shunt experience!

I dont consider my shunt surgery a success. My headaches are worse my vision is still going and they have considered taking it out cause they say its not working. I dont know i have a v/p shunt and they told me it would work but what happened with one person doesnt mean it will happen to you. Everybody is different.

I just had my surgery on the 24th and for the most part I would have to say its a success. I noticed the high pressure headache and blurry vision was gone immediately. However with that said I've been having some stomach issues and also the occasional low pressure headache, I would rather have the low pressure headache that I can lay down with then the high pressure one that was keeping me awake and in pain. I love to read so getting improvement in my vision was worth every bit of pain that I've felt since the surgery. I will say a prayer for you that God will point you in the right direction. One more thing don't let anyone tell you that this surgery is minor and you won't hurt much I had 2 doctors and a nurse tell me that and they are full of crap it hurt like hell so know what to expect and demand the pain medication after surgery.

MM3,

This is a good post topic, thanks for bringing it up. I think you know my feelings but Ill go ahead and recap them for those who are new or may not have read some of my previous posts.

I agree with everything above. There are good and bad results with shunts. It seems that an adjustment or two or three is the norm and when they go bad they really go bad. My experience alone should be enough to scare the hell out of anybody from even considering a shunt. It is also somewhat disturbing that there are so many unresolved abdominal issues with all the recent VP shunts in the group. Hopefully they will all have happy endings.

We all know that shunts were not developed for IIH and like Diamox just a potential solution that might work for some patients with symptoms similar to what they were developed for. We all also know that this illness affects us all differently. And the most frustrating thing of all is it is idiopathic. Who the hell knows what causes it and what will cure it. So I guess that just makes sense why we all have a little different story to tell about shunts.

My story is that life was not right. I could not function like I did before IIH. I had been through all the drug options and had nowhere to turn. I was in so much headache pain that driving off the mountain sometimes sounded better than driving up the mountain for the weekend. It got to the point where anything is better than status quo. So surgical intervention became an option. I researched the hell out of it (I think you old timers will agree) and just decided that a shunt was in my future. Then I started interviewing neurosurgeons. Once we (Laurie and I) found the right one who had the right experience and the right attitude we said lets do it.

Well as you know things did not go to well. Laurie and I both went through hell and I still have an abdominal surgery to look forward to get my abdomen back to normal and then the big question. To shunt again or not. I will tell you right now that the answer is YES I will shunt again. I refuse to let IIH fuck up my life. I will keep trying and keep trying until I get my life back. My shunt was working before the infection set in and I am prepared to try once again for a chance at a normal life, at getting my old life back. And I think the odds are pretty good that a shunt will do just that.

TJ
Second times a charm

I've had 4 surgeries in 09 so its really hard to say what you should do. First off I decided to go the surgery route only two months after I was dx...which to me that was the only option left because none of the meds worked for me and I was getting lps every 3 weeks and at the time I was single 22yr old and I needed to get back to work.

I first had lp shunt put in and had to have a second surg. a week later due to overdraining, then had to have another surg. due to the cathedar came out of my spinal cord. After that surgery I went back to work for 2 1/2months. I am a sales rep and I walk atleast 2-3miles a day along w/bending, squatting, lifting, repetitive movements. I was HA free but my shunt was still leaking csf into my muscles so I was in pain everyday once I came home. Honestly if i didn't drive a free company car w/free gas and make a great salary for being a 22yr old w/o a college degree I could've quit my job and found a office job or job that didn't demand so much from my body and I would've been fine cuz my back was fine when I wasn't working. I could even walk the mall or do things occassionally and my back would've been fine. So in away I'd like to say my lp was a success after numerous surgeries...I was able to live alot more than most w/ptc.

Which because of my job I searched more options and found a new dr. that would put in a vp shunt. (my first dr. said my ventricles were too small) My surgery was july 13th and like all the other recent vp shunters I am having probs w/my stomach. Its swelling at the incision site and it looks like half my stomach is pregnant. lol I have a cat scan scheduled for my stomach and head next week to see what's going on.

Honestly my opinion is you have to weigh out your options...doing nothing pretty much leaves you at having no quality of a life but shunts are a gamble so what do u do...take a chance at possibly having a life. And depending on what you do for a living or what your lifestyle is some of the complications aren't really complications. I think if I had to do it again I would've searched for the right surgeon the first time where I could've skipped all my lp shunts and went straight to the vp. (from someone thats had both surgeries the recovery for the vp is much better that the lp) And if you do go with a lp get a programmable one.

Sorry I wrote so much but what can I say I think we all like to write. lol Good luck with making your decision and if you have any questions let me know I've now been down both roads in a short amount of time. And always keep in mind what Jazzy says about ppl w/successes don't come to boards like this and post...so there are ppl out there.