Plz tell me if I am doing something wrong. I haven't been on here for a while because whenever I do post it seems like I can't get a reply. In the beginning it was nice to have all of my fears and concerns addressed, and not feeling alone. During a time like this I feel so alone which is what I thought this website was about. I can understand if no one has the answers to my questions, but a response would be nice. Thanks for to this who were supportive it really helps to keep my spirit up. I know things will be ok because somehow someway as a single mother I have made it 3 years without much support so I know that God will see me through this time as well. Sorry if I offended anyone, but this is something I had to get off my chest. For those looking at my post for the first time, I know I could have waited and I might be wrong?? If nothing else please just say a prayer for my family that my body heals soon and that I find encouragement and peace soon!!
Thanks again and blessings to all!

I'm sorry you don't feel your getting the support you need :( It is frustrating I know.....I am new to PTC and Daily Strength, so I have not gotten as far into the process as you have been. So I don't really have any advice, I'm sorry. Alot of us are newbies, or we just may not have the answers or gone thru the same experiences, but we are here for you :) Even if it's just to vent....alot of us read but don't always reply.....I thought I would at least reply and let you know that I although I can't relate (and I don't know how your doing it btw) I am here for you :) It saddens me to hear your story because I know what it's like to feel at the end of that rope.....Climbing back up seems impossible at times but it sounds like you have not lost your faith and that is awesome girl! Keep praying for that strength to help get you thru those toughest of days...I know that's what got me thru.....and my girls :) Hang in there, I know it's a desperate feeling, but you are not alone.....I just hope they can get this under control for you and pain free!

HUGS

Kim

I do remember after my last LP (my 2nd one) my pressure was down....It was 17. I don't remember experiencing the back spasms after my first LP, but after the second one I did have them actually. I just stayed as still as I could on my back for as long as I could stand it. After that day and maybe the next, they were gone, but my back still hurt for a few more days....No HA's though, so that was good. I just wonder if after you''ve had a Spinal Tap, if your back always hurts, cuz I know mine still does! I've only had 2 LP's but my back aches everyday.....Just one of those things that make you go...Hmmm....LOL

Kim

Thanks so much Kim! Ur so write I guess I just needed to vent & like many others I often check in to read posts and may not reply. Guess I was being kind of selfish but it's also nice to know I'm not being ignored. Backpain after Lp???? I don't have the best memory so I could be wrong, but I do believe I had alot of pain after the first lp and maybe the 2nd, but then after those I don't think had much pain. I eventually got use to them to where they didn't phase me anymore, except the occasional spinal /low pressure headaches. If the pain doesn't get better w/in a couple of days after the procedure I would call my dr. I wish the best for u and hope ur journey is much easier than a lot of ours.

Hi there.
Sorry not many people have replied to your posts. I know there are only a select few on here who have or have had an LP shunt.
I used to have an LP shunt, and as I recall I had a lot of pain getting up and moving. It took at least a week before I wasn't in horrible, miserable pain. My valve was placed in my abdomen, but I know of others who had the valve placed in their backs.
May I ask how long ago you had the LP shunt surgery?
When I would bend I could feel the tubing "stretch". The valve and tubing in my side would cramp and hurt. I no longer have the LP shunt (I have had a vp shunt since Jan.) but still get pain where the scar tissue is.
If it is red, swollen, you have a fever, site is very painful call your doctor. They would know best and would be able to put your mind at ease.
Best to you!
Mallory

You are not being selfish at all! Don't think twice about it! Like Mallory said, alot of us on here don't have shunts so it's hard to give advice but I guess just posting to others and letting them know that you do read their posts and that even though you don't have any advice or answers, you are still thinking of them. I personally find it hard as a "newbie" when I read a post that's so heartbreaking and I have no advice or answers for that person! I'm sure alot of us on here can relate. It's just a helpless feeling I guess :( You just want to be able to help everyone and give them the answers they so desire and need! We are all in the same boat regardless, and we all started out with the PTC at some point and have gone thru alot of the same experiences, so just knowing I can come on here and vent is something I'm blessed to have, to lean on this group! How was your day today? Feeling any better?

HUGS

Kim

Thanks guys sorry it took a while to get back. It's been rough this last week. So, I had a VP placed 2/12, 8/12- then a week later it cough clogged off supposedly to my small ventricles so my ns took it out & put on lp in 9/12. Since then the worst part was the low pressured headaches, until last week I start having issues w/my back. Started in the area of the shunt & since then the pain spread to my neck head & limbs. They have checkEd the shunt & supposedly everything looks good but they Said that plenty of times before when it really wasn't.

@Kim, thanks so much! I feel so bad, I know its already tough for usf

I feel bad because we all have i t hard as it is, feel like I added unnecessary stress. I'm better but still afraid. Went to the WE for help, they treated me like a drug addict & didn't even check onto the back pain, so now I'm just patiently waiting for my follow up w/my surgeon to hopefully get some answers. Trying to stay encouraged during this time. I know things have to get better sooner or later.

I had an LP shunt that over drained, and I changed NS docs and he removed the LP shunt and placed a VP shunt. He found that I had had a spinal fluid leak around the lumbar portion of my LP shunt that caused a grapefruit sized pocket of spinal fluid in my back that he had to go in and sew up. It took over 800 stitches to close it. This could possibly be the cause of your pressure that you are feeling. I later went on to have many more ventricular shunts, because our small sized ventricles collapse on the tubing causing them to clog. My NS sent me out of state to a University hospital, because he said we can't keep replacing this shunt every 4 months without serious complications. This new NS placed a cisternal shunt, it is in the cisterna magnum at the base of the skull where it meets the spine. That was 8 years ago, and I have not had a single problem since. Ask your NS about doing a cisternal shunt. They are not new, my NS had been placing them for 18 years prior to mine, but not all NS docs are familiar with them.

My LP shunt failed when the tubing pulled out of my abdomen and I got a big swelling on my back, as described above. It was very tender and I could not lean or rest against it. I had the tubing reset in August, but I continue to have a small swelling that goes up and down, and my headaches and neck pain are back. I've tried a small dose of Diomox, that has made my pain worse. My next appointment is the first week of December.
Did your back swell, or does it just feel like pressure?
I would try to get your appointment moved up with your surgeon. When that started happening to me I called and told them I was having complications and they got me in that week. I understand not wanting another surgery. I am there too, but I think I probably need a revision.
Good luck and keep us posted
Amy

The back pain is not as bad they felt for a pocket& didn't feel one. I continue to have weakness in my limbs & neck pain. Good lick luck to you guys. I hate going through surgery & feel wore out but if I need it I really have a choice but to Getty ready for it. This condition really is depressing & wears you down. My prayers are with you all. It has to get better than this!
Blessings,
Toya

Even though my pocket was the size of a grapefruit, they couldn't tell that I had that just by feel. I was leaking spinal fluid from the surgery removal site on my side, and they tried a blood patch that didn't work, so they were going in to close the leak. They found the pocket of spinal fluid when they opened my back to do the repair. So just because they can't "feel" a pocket, doesn't mean there isn't one. Just a though.

Thanks so much for that info. I left very upset because I knew they should have done more.... They treated me like a drug addict. I reported the Dr& got a good report from the director. I was so frustrated & have her info about what we go through & how Dr's tray is in the we when it ours very frightening already & she's Been on top of it.....now if I could only get my ns to be more thorough
I saw you're post prior to my surgery 9/12 he wasn't for out but did agree that if this didn't work he would be sending me to Mayo/Barnes in St Louis.
Thanks again &Hope things stay in your favor.

Stay strong, and remember you are the one deciding what treatment you want to have. There are docs out there that are doing cisternal shunting, so don't give up! I promise it IS worth it. It has truly been a blessing to have had 8 years without any shunt problems! Especially after having to have a shunt replaced every 4 months, and essentially no hair for almost 3 years. I had also had 3 shunt infections that turned into meningitis and bacteremia, blood infections, which led to paralyzing my stomach, which led to a major stomach surgery. It was hell!! I sure wish I had known about cisternal shunts from the beginning! Then I wouldn't have had to go through all that I did! I will tell you that placement of a cisternal shunt causes you to lose almost all of your spinal fluid during the surgery, so afterwards you will have a severe low pressure headache until your spinal fluid builds back up to normal. They gave me Mtn Dew and caffeine pills to help that along. But it was all definitely worth it!! If you have any questions, please ask! I will try to answer any question to the best of my ability! Good luck my co-PTCer!

I just had an LP shunt placed about a week ago. From the instant I woke up I have had the worst headaches of my life. I cant stay in an upright position for very long and if I sneeze forget about it. that pain is so great I cry. I am scared that my shunt is over draining and no one is listening to me. The headaches I had before this shunt were bubble gum compared to what I am dealing with now. My NS seems like a non compassionate jerk. How can it be proved if my shunt is over draining??? The pain in my back is a pain I can tolorate but the pain in my head makes me want to die. I just read a post from this poor young girl who has been through so much and her NS dismissed her from his practice for complaining too much. I couldnt believe it. All I know is I am scared also about this shunt and Im with you in not knowing what to do now.