Jazzy. You are not a failure! You are a beautiful child of God. I know know this disease can be so frustrating. I have the same issue as you having small ventricles. They have had to use the halo and ct to put my last two vp shunts in. Hang in there! You are in my prayers. Amy

Jazzy, I don't have a shunt... Hell I don't even have a definite IIH diagnosis yet! I just have my family, doctors, Vicodin, and THIS SITE to get me through until I get some relief and answers. Please dont stop visiting this site if you are gaining something from being here. Right now I am siting up in bed because my neck and head hurt so bad I can't stand it. I'm half tempted to go to the ER but I'm hoping the Vicodin kicks in soon. So I come to this site to vent, read others stories and yes, have a pity party too. It's ok to do that! Please hang in there and know you are not alone!
Tracy

Thank you Amy and Tracy, I was having such a down day and then the pity party started. You both lifted me up, I know I am not a failure, we all are so strong and go through so much. I need everyone here and hope I can help others. Thanks for reminding me that I matter.

Oh Tracy, I'm so sorry you are in so much pain. Yes, go to the ER if you need to. I know at least they can address your pain issues and get you some relief.
Blessings and healing love to both of you.

Jazzy I am in the same position as you in regards to having a VP shunt as my ventricles are too small too, my only option was the LP shunt.
I only had the surgery a month ago, yes I've been back a number of times to the hospital for them to adjust the flow, yes I had swelling around LP incision site, I still have PAPS and have nerve damage in my left eye PLUS the headaches (although not as severe as before)
I have come to the point that I realized it takes time for your body to settle down after surgery, and I wouldn't say I wish I didn't get the shunt.... All surgery has complications, people usually only voice their opinions with bad experiences and the people with good experiences keep quiet!!

Think positive
Take care jess

Thanks Jess,
so true that people with successful stories usually don't come to support sites like this, why would they, ha.
I will think positive because I don't want to fear the future or what could happen since we never know, or never know what cure is around the corner.
Thanks for sharing, it helps me not feel so lonely. :) Jazzy

Got my shunt in last January to save my vision and help me with headaches. I'm 5 6 at 120 pds, so I had some issues with the shunt for the first week or two (letting it get settled and the scar in my back to heal). Make sure you stay lying on your back as long as the doc says.

I've had no problems with my shunt so far. I also take no meds.

I've also seen posts where the shunts last 15+ years. You never know. Either way, a couple minor surgeries is worth saving your eyesight!

Jazzy, you, a failure? Are you kidding me? I so look up to you, always have from my very first day here. I was so glad to see you back posting again.
I am so so sorry you are feeling low.I wish I could help. I do understand that hearing some of us go on about the VP shunts as if they are magic, ( not for me I can tell you) would upset you. But you must know we would never do any thing to hurt or upset you.I always give examples in my posts, not to be talking about myself, but in case some one out there may be able to relate and feel , its ok, there is more than just me.

I also like to think we can give a balanced view, or both sides to a question, to allow us to explore further.
But, I have no more surgery options left either.
Its a hard pill to swallow, So I do understand.

But know, that I have valued you for two years now, your thoughts, opinions, and yes, your attitude! ( which is usually great).
I think it maybe your turn to need some support and loving from all of us here. Big hugs to you, Cath

I'm so sorry to hear about the hard time you're going through...I have a VP shunt and didn't have issues with my neurosurgeon mentioning problems of small ventricles, but I know what it's like to feel like your body is betraying you and working against you. Most days I'm able to work through it but some I just have to cry. Hang in there! Every doctor has their own opinion and it's usually a strong one. Always remember that you are the patient and you know your body and your pain best. I'm sending good thoughts your way. :)

Thank you dim, it was nice to hear about shunts that have lasted that long. I think it all just got to me that day when I felt like I was never going to get better. I'm so glad your shunt is working well and you are feeling better :)

Thank you Cath, I think that day was just one of those really bad days. You have helped me so much. I know it is important to information on any treatment out there for us with IH. I'm glad I can dump how I feel since it is hard for people without having IH to understand. Thanks for your kindess and understanding.

Thank you Paige, you said it so well about feeling like your body is betraying you. That is exactly what I was feeling. Boy, do I know how opinionated Dr's are (ha) and each Dr. seems to think the way they do things are the best so it can be confusing.

I had to change neuro surgeons because my first NS would not admit he was wrong and kept "experimenting" with my shunt, yet forgot that I was the one who had to suffer the consequences. I finally found a NS who listens to me and tells me why he is doing what is he doing. Though I have to remember I also have a say since I tend to be passive (though for some reason I'm a great pt. advocate when it's not me).

Thank you for the positive healing energy!

Jazzy, I know how you were feeling, to be honest, I was feeling the exact same way last week, though my story is bit different. Getting a shunt hasn't been an issue yet for me, as my eyesight hasn't been affected (only very mild paps), but the headaches have greatly affected my life. Last week it seemed like my entire life, all my hopes and dreams and wishes for my life, came crashing down. None of the my dreams are compatible with this illness. Living in different countries, doing lots of traveling, even getting married and having children just seemed like an impossibility. (Yes in my negitive moments I wonder who on earth will want to marry a girl with health issues like this!)
Last week I was feeling like that getting a shunt is the ONLY chance that I have at having a normal life again. But then, I started realizing that (according to statistics) it's only a 50/50 chance. I went through some pretty rough days. Finally I came to the place again (! I don't know how many times this makes!) of just totally surrendering everything to God...all of "my" hopes and dreams and plans, all of "my" pictures for the future, and resolved anew to let God paint my future. Yes, it looks bleak at times. But I know that one day in Heaven, we'll understand it all!
May all of us find the strength to accept this illness that we have, and use this "lemon" handed to us, to make lemonade!

Bless you,
Elisa

Check this out :)

http://www.iihsupport.org/index.php?topic=3452.0

Thank you Elisa,
Some days I'm good at surrending all this stuff to God and other days not so great. I'm still getting up out of bed and doing the best I can, but boy does it get tiring, ha. Thank you for your wisdom and strength, I will hold onto it while I'm scared! Blessing, Jazzy

Dimnickel,
Oh, thank you so much for finding that. It really helped me to hear a positive story. You totally made my day! Blessings, Jazzy :)