I have no input, only prayers that you get better! Try and keep us posted. I am so sorry that you are having issues with the shunt. That is one of the many reasons I am scared to try it. I always seem to be that one in a million. Get better and I will keep you in my prayers!

Oh my friend! I'm so sorry to hear this news. I was really hoping you were off and running enjoying life. But, please don't give up hope I've heard that so many people require revisions.
You will be in my thoughts.
Take Care,
Angie

Hi Khrys,

Glad to see you posting again albeit not so good circumstances. I have a couple of comments (you know I cant resist interjecting my opinions) for you.

I remember about the time I got my first shunt there were others with stabbing pains. Since they are no longer around, I hope that means they resolved there issues. So hopefully your peritoneal will get used to the pains. Strangely I had them the first time when the catheter was on the left side but do not have them at all now that the catheter is on the right side. I also recall reading here where some have had revision surgery to secure the catheter. If they could figure out what part of your peritoneal is more / less sensitive maybe they could relocate and secure it there???

Also it doesnt make sense that if the shunt failed you would have both high and low pressure headaches. Low pressure indicates over drainage. High pressure would be blockage. The swelling around the valve and the fluid coming out of you incision indicate a leak in the system somewhere. If too much is leaking then ya maybe you could get a low P HA. When my first shunt got infected and had to be externalized, they took the catheter out at my collar bone and ran it in to a bag. When they were sewing it back up the interns made a comment that CSF was coming out of the incision so they needed to put in 2 more stitches. They said that when a shunt is first installed that it is possible for CSF to find its way all the way from your brain to your peritoneal external to the shunt as that pathway was created during surgery. That pathway eventually heals up. However, when I asked my NS about this he totally said no way..Hmmmmm. It does seem possible to me and would also explain why you have CSF coming out of an incision.

I think getting a LP is a good idea. It will go a long way towards understanding if the shunt is working.

And you know my opinion on weight. Thru my whole ordeal I have been as low as 158 (when sick in the hospital) and as high as 200. I feel great at 170-175. Right now I have shot back up to 180-185 and cant figure out why. I notice a little pressure lately and plan to lose the 10 lbs I just gained to see if things get better. I think even with a shunt that I am going to have to keep my weight in control. Once you find the right shunt setting that makes you feel good, you have to take in to account all the rest of the variables about your current health status that enter in to the equation of what is making you feel good. I think weight is most likely one of those variables. Also remember the shunt is a mechanical device and even though it is set to open at some pressure that we think is a good pressure for our head it still has to deal with the volume of CSF produced. Who knows what controls that. It is like a damn with one flood gate open and if it is raining cats and dog the lake will still fill up and maybe overflow. Our heads cannot overflow (unless it comes out of an incision, LOL). They are a fixed volume and if too much is produced and cant find a way out via shunt or other means then pressure goes up.

And last of all, I am sure your docs told you as they said it in the IHRF 08 conference, that they do not do headaches well. The conference notes are where I learned about the drain test and I am shocked that they did not do a drain test before they gave you a shunt. I would ask them why. I hope for your sake you are not one of those that they cannot fix the HA and all I can say is I wish that does not happen to you.

OK, Long and sweet. Sorry to everyone else but Khrys asked for it and I gave it to her.

TJ
Thats my story and Im stickin to it!

Good to see you have some sort of plan to move forward. It sucks so bad that you have to go through all of this. Keep us posted on how it goes.

I am sorry to hear that you are having so many problems, Keep your head up. I pray things will get better for you soon.

I am so sorry you are going thru all this but just remember it has to get better sooner or later, or atleast we hope.

TJ-As always you write so very well but I was going to add a little input. On the securing the tube in the peritoneal...my doctor didn't secure mine till after the 3rd time it came out. He said that they prefer them free flowing in there because of risks of bowel obstruction. He said when you secure them that is when there is more of a risk for bowel obstruction, getting wrapped up around things, what not. Mine now has a clamp type thing on the outside of my peritoneal cavity where it goes in and it is also secured to my peritoneal wall. But with me they were out of options and said that they never do this and I was the 2nd person of his entire career for him to secure the tube. (And my dr. is one of the ones that does atleast 1 shunt a week often more.)

Anyways we all know each of our doctors have there own ways with different things but I wanted to share what my doctor believes bout securing it. Also I don't know if I like the securing because I feel this pulling in my stomach...feels like something is being torn apart, it keeps improving and the drs and I hope it goes away once I'm fully healed but they believe what I'm feeling is the tube moving where it is secured and since its secured it can't go anywhere so it just pulls and hurts. But I guess I'd prefer this pain than it to come out again and have to have another surgery.

Thanks Brooke<

UGH! Believe me, NO ONE, I mean NO ONE! wants a bowel obstruction. Been there, done that. I surely hope you never have to go thru that.

Yikes, strike my comment above about secureing the catheter.

TJ
Hope the Psuedo Medical board doesn't revoke my Psuedo license.

haha. I guess you can keep your license!!! Ya I wasn't quite sure bout this surgery cuz of the risk but they said it was small just bigger than w/it free flowing but it was either this surgery or take it out and I wasn't about to loose my headache free days.

Khrys, you've come so far; I know it's been such a long road but the more answers the doctors get, the more they can help you and return you to health and to your family. I'll keep you in my thoughts & prayers.

Hi MM3,

I'm so sorry it's taking so long to sort things out for you. I'm a little confused about why you need an LP? After Caiti's surgery Oct 13, her pressure was checked by inserting the measuring piece into a latex reservoir below the shunt. And then they checked the shunt setting with a meter that looked like a compass. It was much less invasive than an LP....but it sure sounds like you need to find out what pressure is.

Here's Caiti's story so far. She had a programmable VP shunt put in Oct 13, and her HAs are gone. She is off Diamox (3000 mg daily), off Lasix (20 mg daily) and morphine (120 MG daily) The morphine withdrawal was awful, but she managed it.

However, at her 6-week checkup with NS, she told NS about this growng stabbing pain in her abdomen. NS said she thought it might be a hernia - 'quite common after surgery like this" - arranged for her to see a General Surgeon (appt Jan 11) But the pain got worse, and then everything she ate was running right through her, and she started to pass blood through her rectum.

So back to the Family Dr, who thought it might be adhesions from surgeries. They did a CT scan - no excess fluid in peritonal area, saw adhesions around belly button, couldn't see behind, so we're back to a general surgeon to do a laparoscopy to see what is going on. Anyway, the pain is worse, the bleeding persists, so we're heading back to ER tomorrow.

She's quite depressed now - but have to stay focused on the fact that the HAs are gone - and hopefully will stay away - so there are success stories with VP shunts! But man, it just seems to be something else all the time.

MM3, I'll be thinking of you and saying my prayers - you're ready for a break...heck, we're all ready for a break...

Good luck...Judie

MM3,
So sorry you are going through this. I had mine secured, but the surgeon this time discussed it with the Neurosurgeon and they decided to tuck it behind my liver and secure it there. I am having pain in my right side now, which we believe is the tube, but can't be sure since I had pain before the surgery. They said it could be something developing from the gastroparesis too. I'll be thinking of you and will check back on how you are doing.

I too have had a migraine the past week and spent Saturday afternoon in the ER. They gave me two doses of Demerol IV and then followed it up with two doses of Delaudid before it finally dulled the pain some. He also did a CAT scan to check to make sure the shunt was working since the headache was so bad, it was ok. He gave me Benedryl and Compazine for the nausea and a bag of fluid before he let me go 7 hours later. Thank goodness the doctor looked at my chart before coming in because he was very concerned about me. I told him I didn't like the Delaudid and he laughed and said it was a first for him because most of them come in screaming for it. He finally convinced me to take it even though he knew I didn't want it to try and make me comfortable. Of course, I started throwing up again when I got home and was sick most of the night. That is the gastroparesis and he wanted me to call my GI doctor this week to let him know.
Liz

Thank you all for the love, support and prayers.

TJ...My favorite Pseudo-Doc...I appreciate your input very much. Although, now that Brooke has chimed in...I suppose I'll hold off on having the catheter adhered to anything. I can't recall, but I still wonder if it can be shortened a little. It is still hurting quite a bit.

I went in for an LP under flouroscopy today, and was able to see the catheter for the first time. IT IS REALLY, REALLY LONG and I could see where it came down and then veered off clear across my stomach and curled up. The LP was as uncomfortable as always...even with flouroscopy because I don't think the radiologist was well versed at performing these punctures. It took him almost 20 minutes to get the needle in just right...and I'm an easy tap. Anyhoo...the bad news is that my opening pressure was 24. By all standards...this number is not horrific. But, by shunt operational standards...it is still too high. Dr. Katz stated that anything over 20 means that the shunt isn't functioning like it should. So, this may mean more surgery for me. But, at least this explains all of my HA's. I do understand what you meant though about the low pressure HA's TJ. One would think that it was working...at least at one time. Still need to discuss the swelling and fluid leakage around my site with my docs in more detail.

Judie...I'm so sorry to hear that Caiti is still having some trouble. Please tell her that I completely understand how discouraged she must feel, for I too, am feeling discouraged.

TJ...I really hope that you are still doing well and aren't having any complications with your shunt. Stop eating hoho's! LOL

Liz...Please know that you are always in my prayers. I want so badly for you to just be well. I think of you often and am sending healing angels your way.

I will update you all once I hear back from Dr. Katz this week. Right now I'm just playing the waiting game.

God bless.

Khrystine

MM3,

At least I picked the right time of year to pig out on........

Ho, Ho, Hooooooooo......Merry Christmas!

TJ

MM3, I'm suprised they didn't do the LP through your shunt resevoir, maybe it is diff for a VP shunt, but sorry it was so unpleasant. I know how hard it is to think of possibly having surgery again, but if they can fix the shunt you will be much better and not suffer anymore.
I had those horrible sharp shooting pains in my left lower quad. for about 2 months and then they slowly subsided. Once in a while I get one and I push into the area of where it hurts and it feels better, I also noticed that putting a heating pad on that area helped decrease the pain. I hope you feel better and you are in my prayers, Blessings Jazzy

MM3- I believe my dr. has said the shorter they are the better, but I think on a patient like me that has problems keeping the darn thing in my stomach to begin with, shortening it isn't an option.