the op as you all know went really really well few complications while i was under but i was asleep so i dont know no different. But what shocks me is that the recovery wasn't too bad but now that the healing is well on the way the troubles have started, i cant poo with out extreme amount of laxatives and i have a bulge coming out of my tummy the size of tennis ball. i cant sit comfortable at all and i start back to work in like 2 weeks.

i feel like such a ungrateful spoon because the shunt has got rid of the head aches double vision and swooshy ears but given me different problems. i feel like such a bad person i should just be greatfull.

oh goodness that isnt good. I dont think you're ungrateful for wanting to ask questions about it. Those are serious complaints, and you should be seen by your doctor ASAP to make sure everything is alright and working smoothly!!

It sounds like you may have developed a cyst, which is sort of common. Contact your dos ASAP and be seen by the surgeon pronto. The tubing may need to be readjusted.

And I agree, don't feel like you should be grateful for what you got and settle for the rest. You go for it!! You deserve to be 100% better!![You must be registered and logged in to see this image.]

thanks guys, i have an appointment in 2 days to see my nuro hopefully he can help x x thanks for making me not feel so ungrateful x x

wylee if it is a cyst dose that mean surgery x

Boy, I don't know the answer to that one. I suppose it depends on where it is and what it is made of. I would hope they could just asperate it (insert a needle and drain it). Not to worry, it seems that developing a cyst where the tube terminates is not uncommon. The docs know how to best treat it. The hardest part is the decision of what to do to keep it from coming back. They may have to open the tummy scar slightly and move the tube to a better location. Your surgeon will know. It just needs to be addressed soon, so it won't evolve into something bigger.
[You must be registered and logged in to see this image.]

I agree..there are a lot of things that can happen after surgery, so glad you're meeting with doc soon! Take care of yourself and never feel guilty for wanting to be well.

i think i just feel so guilty because everyone on here is having agonising head aches and vision problems and i feel like tummy pain and a lump is nothing in comprasion.


i think aswell its because i have felt that pain that ur all going through had it for 10yrs and u guys r worse off than me right now and i dont wont any of you thinking that i am ungreatfull or that i dont understand or apricitae your pain and continued journey

Sammy sweetie, we are all in the same boat, that's why we all understand one another. Those of us who have been shunted have had similar things happen after surgery, and it is just as worrying and important as those who haven't been shunted, and are still having headaches.
Hopefully it will all get sorted for you soon, it could mean surgery again, because a bulge like that can also indicate that the end of the tube has come loose. I had that happen 3 times after a shunt surgery.
Remember you are always important to us here , and you aren't ungrateful just worried and confused.
Heidi xx

thanks heidi x x [You must be registered and logged in to see this image.]

Sammy, I am worried about your psyche in that you are always feeling guilty for having any complaints. someone somewhere in your history really traumatized you and made you feel like you had to be perfect and never complain, maybe that you didn't deserve to be taken care of when you are sick. it seems beyond the usual of what we with IIH get hit with, when no one believes we are sick and they think we are just whiners. I hope now that you are feeling better in your head, maybe you can see a therapist and start to become empowered in who you are and what you deserve. I don't know the details but I know it sounds like you may have had a rough background/upbringing. you deserve to feel centered and loved and able to voice how you feel. you are always welcome to speak your truth here, so please don't feel like you need to be always apologizing for yourself. we accept you just as you are.
[You must be registered and logged in to see this image.]
Deb

deb u r spot on in that i was never looked after as a child i took care of my self lived in a hostel from 14 the only person who took care of me was me.... my nuro has canceled my appointment due to emergencys but has made an appointment for me with different doc today at 5;40 so hopefully can find out whats occurring would just be nice to sleep coz i sleep on my right side which is impossible with this huge lump x x

you should be a therapist deb honestly, u reallly r spot on .... appart from one point i used to have therapy when my mum kicked me out at 14 and to be honest i was really bad at it i cant talk to strangers but i do have this amazing woman kellly the best friend a girl could ever want she just sits thre and lets me vent and then she says and breath lol x x.... need to geth my tummy sorted cos i start back work in 2 weeks x

Dear Sammy;
I am so sorry about what happened with your mom. that is terribly traumatic. my story is nowhere near that bad, but my mother is....well probably mentally ill. but I know what it is like to need to be nurtured by a mother and that person just isn't there, or they are there but then are abusive right when you needed support. I am glad you have your friend Kelly and hopefully with time you can develop relationships that are supportive and feel like family. just be careful with men, but I think you know that....
[You must be registered and logged in to see this image.]
Deb

well saw the doc today my shunt has coiled appointment is being made to see surgeon next week all being well [You must be registered and logged in to see this image.]

just cant believe that i was stupid enough to think this was all over that i thought i was getting better what a joke x x x

so don't they just go in and uncoil it where it is messed up in your abdomen? they don't have to go re-do the whole thing do they? your head is feeling better, isn't it?

thats what i thought but apparently my optic neve is swelling which means the fluid is building again ..............i said but i feel better and he said that because when they do the op every bit of fluid comes out that it would take a while for me to feel the build up.

Sammy once they've sorted out the coiling, they may also drain off the excess fluid too. Hopefully you will feel the difference within a few days of them doing it. Try not to worry and keep positive. That happened to me a few times, but once they sorted it I was able to get back to normal quite quickly.
I've been shunted for 12 years now, and I can function as you can see, and I pace myself so that I can do bits of housework and things, without making myself too tired or headachey. You will be able to as well once your shunt is fixed and you reacclimatise to it. Get to know you're limits and pay attention to what your body tells you and you will be surprised at what you can do. Honest!

i am hopeing that un coiling it will work i really do x

I've had it done too! My catheter was coiled into a ball, so my pressure was off the charts and optic nerves were swollen. I felt the results immediately and it was a simple abdominal surgery..I hope the same for you. Good luck Sammy..keep us posted!

do they just open ur stomach the same way they did for the original shunt x

I've had so many surgeries, I don't really remember. I just remember I only had abdominal incisions and it was a huge relief. It's definitely nothing compared to what you've already endured.

brilliant for the reassurance x x