I wish I had something to offer but alas, I don't .... Just wanted to say good luck today!- Nicole W.

I am having my first vp shunt put in next Friday. I had a LP last Friday. My pressure was high but not as high as it has been. I have neck and shoulder pain or they are just really tense. I also have fibro. When they did the tap it was instant relief for me with the headaches and the neck and shoulder pain. I know shunts malfunction-so maybe that is the case or it could be the fibro. I would let him find out why you are feeling the symptoms you are. If they can't figure it out-then maybe it is the fibro. Good luck today!

Hey GBfan,
I live in WI also and I'm feeling the same thing, my neck is so stiff and my head is hurting from the constant rise and fall of pressures. We definitely can feel what is going on. ;( But at least none of the harsh weather hit us but I pray for those it did.
As for seeing your dr. I would mention the fibro as then it gives them a full picture of what is going on making it easier to treat you. I myself wonder if there is something more going on with me as well. How did you guys know that you had fibro?
Texan - best of luck with your surgery.
And GBfan I hope your appt goes well and I hope this is the last of the crazy weather but you never know.
:) Mandy

I was reading ya'all's post and it's really interesting that alot of you have fibromyalgia and IH as well.. I have IH but my mom has fibro makes me wonder you know. Very interesting. :)

I am finally getting around to letting you all know how my NS appt went. The Physician Assistant was really nice and asked lots of questions, etc. Then, my actual NS came in and the first thing out of his mouth was asking about if I had insurance or not?? I said yes, and it was updated at check-in. He was more concerned about that then what I was there for!! After that, he said, "we checked your setting and it is at 1, so what do you expect me to do now"? OMG! I about fell out of my chair! Just because it is set at 1, doesn't mean it is at the right setting, correct? He said, "if you really want me to, I can stick a needle in your shunt and check the setting that way"..uh, after the way he acted, I didn't want him to come near me! So, when I got home, I decided to call and request my records. Last week, I received a call from the hospital saying my NS was requesting a LP be done. I went ahead and scheduled it because I have not had one since having my VP shunt put in two years ago. I appreciate you all being my sound board :) What would you all do?

Exactly what you are doing. Get records move on.

Buttercup - sorry as I am just now reading this. I found out from the rheumatologist about the fibromyalgia. They tested for all sorts of autoimmune disorders and are still watching for rheumatoid arthritis.

Greenbayfan- do you take someone with you that will speak their/your mind? I have done this for the past two appt's and I have got more answers than I would have if I went alone. Get another opinion- why not? Someone else might not touch your shunt though. Unfortunatley, You might have to work with him. Can you get the LP done to see what your OP is? Maybe get that done while you look somewhere else. Keep us posted. Good luck and find a noisy advocate.

I agree about the moving on thing ...get records and get outta that practice. He could also get into a lot of trouble depending on who he works for (himself or a healthcare org ) for asking you about your insurance like that. He should be smarter, thats why they have support staff. Move on now rather than later. and please tell me his name as i may be moving up there in the future !!!
I am in Lake Geneva now.

Hey GBF,

Been a while but great to hear from you and of course sorry to hear your symptoms have returned. For me, when the symptoms returned, the shunt was blocked. Shunt taps and nuclear studies were done to confirm and then I had revision surgery, twice, and then the last time we converted to a VA as my peritoneal was just not liking the CSF.

Hope you find a better dr.

TJ
The purple people eater!