Hi all, I have been having pain in my neck where my shunt tubing is feels like a throbbing sharp pain, also the back of my head on the opposite side is killing me. I have been sizzy again and seeing black spots. I have read some posts where people have said that it might be the nerves and the shunt tube pulling? Im so tired of pain :( My neurololgist has sent me to a pain managmet center.... I will probably have to wait months to be seen. I plan on calling th NS office this morning. Nervous I will have to go to the ED or something. Is neck pain something I need to get used to with shunt life? Im just feeling so depressed that nothing is really changing for me since the shunt placement, and now this!

Does it feel hot and like the catheter tube is being pulled when you move your head? Also do you have any pain in your abdomen, sickness and fever? You shouldn't be noticing that the tube is there unless you feel it with your hands. It is most definitely NOT something you should get used to. Contact your NS asap and insist he investigate what is going on, or you very well may have to visit the ED, as this could indicate an infection. Please read Common infections with shunts

Please keep us updated and we will all be thinking of you.

Thanks Heidi, they had me run in and do a ct scan this morning now im just waiting to hear back. I dont know if it will show anything but i feel like crap. pain meds only help for like an hour after taking, is there any longer acting that helps? Pain doc doesnt have an opening until the 24 like three  weeks away how fun!

I have been having pains in my belly the tubing is throbbing but not too much like pulling just throbby and achy I dont have a fever though :( I hope they call soon with advice.

How awful that this is still going on.  Please try to stay after your NS and ask them if they would prefer that you go to the emergency department and be seen there instead of seeing the surgeon.  That just may be their plan.  If it is, you may need to hunt down a whole new team to help you.  The shunt may take time to get used to the change in the CSF pressure, but, other than that, you shouldn't even know that the shunt is there.  It does sound like there is a problem with the shunt.  Keep trying to get someone to listen you, and sooner than later is much better.

im really at my wits end. they had me rush over to get a ct but they said he only ordered a cranial ct, so that will show nothing of the neck :( I waited all day and he called said all looks ok except some bone in the back of my neck is to straight!?? WHich causes skull pain also he said. He was like ya you really need to getinto that pain painmanagent place... That hasnt excepted me yet! and she told me there scheduling over 6 wks out. So now I wait.. i guess thats all I can do. I am weaning of the pain meds ( was on Fentanyl patches ) and oxycodone, its been the only thing thats helped me but not they only want the pain doc to handle that part. which I understand and its probably a lot easier that way but im sick of waiting and being in pain and having nothing at all that will take it away... NOTHING works besides pain killers and they only last an hour. I feel alone, and I am starting to really see that some of my doctors dont care. im depressed :( I hate starting over, and working is just too much I feel like im going to have a beakdown! I see the surgeon Aug 1 st if it gets any worse I guess ill call them again but people treat me like im making a big deal out of nothing but its my damn body and I know when its not right. sorry for the rant.

Rant away..we all understand how frustrating and isolating this process can be!!! I really think that the neurosurgeons see so much trauma and awful things that they don't get motivated unless your brain is coming out your ears or your skull is visably falling apart. I actually had one of them tell me that people with IIH don't understand "real pain", but he could take me to trauma ward and show me..of course I left him in a heartbeat and kept looking until someone heard me. It can be a long and frustrating process, but totally worth it!

I know you recently had shunt placement, but how long has it been now? It seems like it's been long enough that you shouldn't notice the shunt/tubing unless there's a problem with it or your physiology. I would definitely call neurosurgeon if symptoms get worse or you develop a fever. Maybe contact neuro-ophthalmologist or whoever manages your vision because of spots in vision and they could advocate for you if changes to your vision. If not, go back to ED. They're very sensitive to drug seeking behavior, so make sure you just focus on your symptoms and concerns with shunt. Let them know NS did CT of head, but you feel issue is tubing in your neck/stomach. Make a list of symptoms before you go and everything you've tried to address it..hot/cold packs, laying down, caffeine, meds, whatever. There comes a point where you can only do what you can do and you have to wait, but at least you know you've tried everything.

Stress only makes symptoms worse, so rent some movies, meditate, or do something to get your mind off of it for awhile..you have to find ways to take care of yourself when no one else will! Again, we've all been there and know it's not easy, so keep reaching out if you need support..hang in there!!!!

 
Julie