I truly hope you get this resolved quickly. I know you had higher hopes after getting the shunt. I pray they get it straightened out for you soon and your results will be as amazing as TJ'S and others with such amazing success stories.
Good luck
Betty

Hi MM3, I responded to your update on facebook but wanted to tell you I'm so sorry you are going through this and I'm so upset that you are in so much pain. I hope they can unwrap the catheter around your liver and get you back home asap. You might not feel strong, but I know you will get through this and we are all pulling for you, you are in my healing thoughts and prayers, mluv, Jazzy

MM3,

I hope you start to get better real soon. I know this has been hard for you. I remember when I first joined you were so bright, which is hard to convey over an internet support forum. They'll get you back to your brightself in no time and you'll be able to enjoy your time with your kids, painfree.

Good luck.
-Ashley

Thank you all. The doctors are planning to try and wean me off the IV meds and onto oral. But, I am nervous about it because the pain is so horrific. I am tired and as you already know the shunt is not working well. We may have to revise the shunt if I have anymore pain. Currently my shunt is set on 70...dropped from 150 because last week I had a high pressure HA. My doctor insists that we continue to wait until next spring to make a determination as to whether to take the shunt out or start over. In the meantime, I just continue to suffer. And, I'm sooo lonely because my family is in Rochester, while I am fighting here alone.

MM3

Hi MM3,

I am sooo sorry to hear about your problems and that you are back in the hospital.

Know that Caiti and I are both praying for you, and hope the doctors help you get it stabilized soon!

Stay strong!! We're all pulling for you!

Judie

MM3,
I am sorry you are having such bad pain. I know how bad it can be since my pain in my right side is excruciating to the point I can't walk. The doctors didn't see anything in the scans last week and after demerol and delaudid IV they were going to admit me but told me they didn't want to give me anymore narchotics. I decided to come home and learn to live with it. I reminded the doctor that they never saw the cancer on any scans or blood work before when I was hurting this bad before I left.

Keep in touch and you are in my thoughts and prayers.
Liz

oh sweety that is terrible i really hope they figur it out soon good luck and don't go home till your ready honestly it is not worth the back and forwarding

MM3,

I'm so sorry you are having this struggle! Those damn tubes can really be painful.

Mine got coiled up a week after the shunt placement between my diaphragm and my liver and was ridiculously painful. And they couldn't see on scans where it was and why is hurt so much. Since they can see yours I can only imagine the pain you are in. My NS watched me closely and we gave it 3 weeks to move on it's own. I couldn't even take a deep breath. After 3 weeks they went in and moved it themselves - both the VP and broken LP tubes were coiled up scratching the hell out of my liver with every breath I took. I share my horror story so you can see the happy ending. I woke up from my "tune-up" surgery, as we call it now, and was instantly better. I sat up and took a deep breath with my husband and mother watching nervously. The pain was completely gone! They even let me go home that night once I got my BP up and stable.

I hope for your sake your tube moves on its own. But if it doesn't know that the surgery to move it is often very successful. No good doc is going to cut into you unnecessarily but you tell them when you have had enough. Telling my NS I was ready for him to go back in was the best decision I made.

Good luck! I hate to think of you lonely without your family and in pain this time of year. We are all hear for you!

Bianca

Oh MM3, I can't believe they want to wait until next spring to make a determination? You can't be in that much pain till then that is rediculous (sp?), I hope they see that and decide to do what ever needs to be done to fix the shunt and get it unwrapped around your liver. I'm sorry you are going through all of this and have to deal with such intense pain. Also I'm sad you are so far away from your family but I want you to know that we are all here for you, just keep posting when you are up to it, your are not alone! mluv, Jazzy

Tonight I am finally home from the hospital. On top of everything else I have a respiratory infection. The good news is that it would seem the tube has unraveled itself from my liver on it's own. Now it's just poking me in the usual places...LOL. Thank you all for your love and support. This has been a terribly upsetting time for me. As you might imagine I am truly disappointed by the results of my shunt.

Bianca: Do you know if any permanent damage was done from the shunt wrapping around your liver? I asked and they said that the tube is small and flexible and therefore no damage should be done. But, the pain was HORRENDOUS...so I would imagine this can't be good.

I asked my doctor about cutting it back and he looked at me like I had three heads. He said they don't do that and it wouldn't make a difference if they did.

Right now I just want the shunt removed. I just feel that it has brought me more pain than relief. As it stands, the tube could very well wrap itself around my organs again...and as it were this week...I would be right back in the hospital again.

As my mother and I noticed today, my valve and reservoir are swollen again. Even the tube down the side of my head feels swollen. I don't imagine that this is a good thing. I have tried pressing down on the resevoir but it almost feels hard...not cushy like usual.

I am interested to hear your input on the issue. Anything that could help me make a decision would be helpful now. I am so relieved to have you all here for me. I have shed many tears as of late, and it is nice to know someone, somewhere cares.

Much love.

MM3

MM3,

I don't know what to say that has not already been said here. THIS SUCKS! You are supposed to be feeling like a million bucks (like me) and be back home. I am so sorry to read this,

Glad to hear the tube unwrapped itself. Your doc is right that it is very small and very soft. When they had to externalize mine because of the infection I was amazed at how soft and squishy the tubing was.

Something sure doesn't sound right for your pressure to be that high and the swelling. I am shocked the docs are going to just wait. What are they saying about the swelling??

TJ

MM3
I've been out of the loop... finally got the computer moved to the bedroom. Glad to hear you are doing a bit better. But I'm so sorry you are still having to deal with all of this.

Now that it's Winter Break, can the kids come and see you?

Keep us posted, I'll be thinking about you.
Bax

MM3,

Sorry for the delay in my reply - I've with my in-laws for our version of Christmas. Damn diamox for ruining the taste of beer for me. I really could have used a few of those over the weekend.

Re: permanent damage to your liver - I asked the same thing of my doc b/c the pain was so bad. But the liver is the one organ that regenerates so it can heal itself if the tube does damage it. Knowing that made me feel much better.

Re: cutting back the tube - I also asked this one! The tube has to be as long as possible so you can more freely and it can "float" around as you move. My NS said over time it would settle into a "track" and not be as painful as it moved with me. My challenge with the tube now is since I am dropping weight fast (had gastric bypass 9.29.09 to try to get the PTC under control) my tube is having to deal with less space in my body. And it is being very fussy and painful about having to move out of its track. I'm going in for CTs and a shunt series tomorrow morning to see where it is hung up now. Ugh. I'll keep you posted.

I was right where you are in wanting the shunt removed when I was in your place. But it will get better. After my "tune up" surgery to move the tube my quality of life has gotten exponentially better and my symptoms have settled down into a more manageable pattern. I use the analogy that the symptoms (headache, blurry vision, ear thumping, and equilibrium mess) used to swing back and forth between 1 - 10 on the severity scale on a daily basis. With the shunt and the diamox mix the range is more 4 - 7. I can deal much better with a 4-7 swing than the insanity of being at 1 on Wednesday and 10 on Thursday.

My reservoir swells from time to time too. No rhyme or reason why. NS told me to call if it was excruciatingly painful or came on fast and didnt go away. He also told me to never press my reservoir button. I think he just didnt want me screwing around with it as a party trick.

This got a little long and out of control. I hope it helps. This is an awful stage you are in but it can and will get better. Look at TJ he went through hell and is much better now. I hope things are continuing to get better!

Bianca