Oh hunny that sucks so much i really hope it stops soon mine only hurts when draining now but hope yours settles asap

Hey Khris, so sorry to hear you are in such pain,again. Damm shunt! Kinda wonder somethimes at the wisdom of having one...

Have you tried Buscapan? Its an antispasmdrug. I have no idea why it works to relieve but it does. Its a pretty safe drug, it will make you a litttle bit sleepy but, hey, you do need some rest after all that pain.

Also, I drink a lot of water when it happens. Not sure why but it seems to keep the kidneys doing their job as well.
I do hope this passes soon hun. Cath.

Khrys,
So sorry to hear you are hurting so much. I know you have had a rough time lately. I forget, are you working with a pain management DR? If not I would strongly recommend it. When you get a good pain management Doc they really seem to get it and can help a lot.
I hope you feel better soon!
Emerson

Thanks All! Cath: I've not heard of Buscapan, but, if you say it helps i absolutely trust that I NEED it! I see my PCP on Monday. I'll mention it to him then. EE: Thanks for the info. Prior to getting my shunt Dr. Friedman wanted me to see a pain doc...but, it never went through because the doc she recommended wasn't on my insurance. I'll talk to my PCP about that too! Uggghh!

Hey, I go back to the retina specialist next Friday. I have a feeling that he is going to have bad news because some of my symptoms have come back since my neurologist took me off the meds. If I get bad news, I have decided not to go back on the meds and get the shunt. What do you mean by it really hurts though? I just cannot go back on the meds again. The side effects were so bad. Just yesterday, one of my toenails fell off. That medication had to have been leaching every vitamin and mineral out of me. Let me know about that shunt please.

Have you ever been to a pain management doctor? If you have, if it was before your shunt or if you've never been I suggest it. As you've prolly seen on FB I'm going to one and so far I'm very excited and think that they are going to help all my pain go away from the shunt. go to trinitypain.com I know this is all the way in Texas and you can't go to mine but you can look at brief descriptions of all the different things they can do. They seem like they are very familiar with shunts and even PTC. They even told me something that I've never heard before...when CSF is drained into your peritoneal it shouldn't cause pain but if there's ANY blood mixed in that then your going to feel pain because your peritoneal doesn't like blood.

Anyways I'm so sorry your in pain I know the feeling of living with pain everyday but please think about going to a pain mgmt dr. I was scared to ever go to one because I hate pills but for the first time in a long time I feel VERY positive about becoming NORMAL again!

haha i just now read the other posts and read with EEmerson wrote. EEmerson what is your pain mgmt drs name?

Brooke:

Is blood in your CSF a bad thing? Is that supposed to be happening? Because I'm definitely having pain and if your doctor is right than this may be a problem, yes? Also, if I have blood in there do you think this could be why my shunt seemingly gets blocked and backed up or swollen all the time? Could it be due to blood clotting?

Well Idk answers to any of your questions except he said blood in your CSF going into your peritoneal cavity causes pain but just plain CSF shouldn't cause pain. I didn't really ask questions cuz I don't think this is the cause of my pain, I think my pain is from scar tissue and all the many surgeries done on my right side plus my tubing is now on the left.

But based on what he said it sounds like blood shouldn't be in there but I'm not sure what would cause blood to be in it or how they would go about finding out if there's blood in your csf. Yeah a LP could tell you if there's blood in that but just because there is or isn't blood in your LP CSF doesn't mean there would or wouldn't be blood in your vp shunt.

But I think if there is blood in it then blood clotting could possibly make sense.

Only thing is remember that this was my pain mgmt dr. telling me this not anyone specializing in neuro but his specialty is anethesiology (sp?) and from what I know about them they are suppose to be some of the smartest well educated doctors!

Hello, I had the pain that you discribe after my shunt was placed. Cath is right, my doctor put me on an antispasm medication (Levsin Sublingual Tab) and Vicoprofen for the pain and it has been working well for me. I also have sooooo much nausea so he put me on Promethazine for that. I don"t feel sleepy with this mix and am feeling at least 90% better most of the time.

Good Luck and Hang in there!

Cheryl

I have never been one to take pills but I'm affraid that this is the only way to get my life back.

Umm,Brooke, I think you may have this wrong..about the csf not being a problem in the peritoneal cavity. As far as I know, the body perceives the csf as a foreign body and fights to rid the body of it.
As time goes by, the body starts to recognise it and will pass it with out a problem-most of the time.But , like every thing in this world, there can be times when it still hurts.

As for the really bad pain we all seem to suffer post -op and beyond, I was told, it was the catheter, which is free floating in the peritoneal area, when it "bangs" up against a nerve or organ. For some reason, I have found the anti-spasism med really helps!

As for blood in the shunt or catheter...I would be very worried if that was the case. There would have to be some red blood cells as apposed to blood, which would suggest to me a clot. If that were to happen, there would be big trouble!
But , with a blood clot, anywhere in the body, you would know it was there, by, pain, localised redness and swelling. And I mean, a lot of pain.

The human body never ceases to amaze me, how it works and also breaks down. It would have so many red bells ringing in the event of of a clot.

So, Khry, unless I am very wrong, and I could be,I wouldnt think it s a clot. I know something is going on with you. Maybe if you could take the anti-spasim meds, getting it working, give your poor body a rest from pain and then maybe get to the bottom of all this.
Your mind and body must be worn from all this pain.
Will you please post again, with your symptoms? I will have another think about it, ok? Cath.

Im so sorry you are going thru this. I know the pain, i dont have it all the tiem like you do. my shutn only hurts w/ touching it, laying on a pillow, taking a shower, then i see my NS, i tell him all of this and what does he do, he pushes so hard on it that it was throbing for the rest of the day. what an ass! but i guess it verified in his mind that it was workign? not sure how he figures that from pushing on it but ok.
I think you need to get a second opinion, my dr did say that it could be tender for a while but that it should eventually get better, its jsut nerves trying to heal from surgery. yours sounds like its getting worse not better over time.
im wishing you luck and a pain free day.
ky

Thanks all for you support and input. I saw my PCP this morning who was quite disappointed that neither of us have heard back from my NS or his Nurse Practitioner....(My PCP has been trying to get through to them also).

He spent an hour and a half talking to me about all this and you will all be happy to know I brought up many of our conversations on this matter to him. Brooke, as it turns out, Cath is correct in that any fluid be it blood or CSF that drains into the peritoneal can be perceived as foreign and your body signals the brain pain receptors and waaahhh laaaahhh...we have pain. Here's what we believe is happening. For whatever reason my shunt is blocking, swelling and causing pre-shunt headaches and neck pain....eventually that build up of CSF causes the "flood gates" or valve to open and all that backed up CSF runs through my catheter. If the shunt were working normally, my catheter would trickle small amounts of CSF into my peritoneal on a daily basis. But, since it's not working normally, I am having large amounts of CSF rushing into my peritoneal all at once. It it were normal and just trickling as it should I wouldn't have a great deal of pain, if any pain at all...but, since I'm having so much fluid all at once I'm having a lot of pain. (And of course, there are other occasions when the catheter itself can rub against an organ or nerve and cause pain also.)

I did refer to an anti spasmodic drug as you all had suggested and he gave me a prescription for a drug called Bentyl which is supposed to help. I took it...and guess what...Just as with the last med he gave me, my shunt is swollen and I am having an awful headache. In fact, I think after this post I'll need to go to the ER again...because nothing is helping.

So this is the rollercoaster I'm on...swelling, pain, flushing, pain, okay for a day or two and than back on the rollercoaster. It hurts...and I'm crying so I have to go. But, thank you.

Much love,
Khrystine

Cath & Khyrstine I wasn't sure how accurate it was just going to pass it on to you. My doctor mentioned it but I could've misunderstood him and I didn't ask for details because I didn't think it had anything to do with my problems. But I'm glad you found out some kind of answers with your PCP.

Hey Brooke, no worries! That is what this site is all about, sharing info and trying out new ideas. Anything that gets our thinking caps on is good.

I am with you about the NS pressing on the shunt and pronouncing it works!Aggh! Do they have to press so hard? I to have a pain in the site for a week after. Now, when I see them coming-I duck!
Then they do a cat scan.I can not see the sense in this. They only do a scan of my head anymore, so how and what can they see? I give up....


Khry, I think it may be time to admit yourself in to the hospital.
I know, I know, you wonder is there any point? But you cant keep this up, this level of pain. Go in ,give them some time to run some proper tests, and see if they can get to the bottom of all this.Once and for all!

I am so so sorry to hear you are still in this terrible pain. I cry for you. Cath.