Just wanted to say hello and for a place where I can hopefully get some much needed support right now.
My name is Kim and in 1992 I was diagnosed with PTC when one day I had double vision and it didn't go away. They did a spinal tap and found my pressure over 400. I was approximately 30 min from going blind...scary. Well for a year I battled with nearly 50 spinal taps, all kinds of meds and nothing would help so they inserted a lumbar shunt at that time. Fast forward 20 years later...here I am. I know I am fortunate that I have had this disease for so long without any further surgeries. I do believe a lot of my health issues radiate from this disease though and doctors have not taken it into consideration.
My pressure is back up, headaches are debilitating, ear ringing, nausea...you guys know the drill. So my new doc, because my old one retired, is going to put in a ventricular shunt in on 7/31.
I was silly to ignore this disease for so many years and now I just feel like hell and I am just plain ol angry!
Thank you for reading my rants and for this forum. I hope it helps my mental stability through all of this
Kim Hake Hermann

Hi Kim..it definitely sounds like you're in the right place! I'm so sorry you're feeling crummy again, but at least it sounds like you have a plan. I honestly don't think they know all the ways IIH affects us, but I've definitely had a lot of ailments they keep chalking up to "neurological causes". Hang in there and hopefully the new shunt will work as well as the old one!!! We'll help you through the best we can..


Julie

Hi Kim and a very warm welcome to our group. I am so glad you found us and joined. It's fantastic that you managed to go so long with your LP shunt, but it doesn't take away the frustrations and other issues you've had to deal with healthwise, I know this myself firsthand. You'll see that many of us have multiple health issues, some of which go hand in hand with the IIH.

I don't think you've been silly, I think the shunt seemed to have worked and you were able to put it to the back of your mind, while you tried to get on with your life. Which is why I can understand why you feel so angry and frustrated now that the symptoms have raised their ugly heads once again. I felt exactly the same when I came out of a 4 year remission.

You have a right to be angry and feel the way you do, because what people don't understand is that this disease cheats you. It cheats you out of doing all the things that other people take for granted. It also takes away your control and free will, because everything you do depends on how you feel that day, so it's also hard to make plans to socialise and even do housework.

We tell all our members not to apologise for having a rant here because we encourage you to have a voice and be heard, which is why we have Group Huddle. You can take comfort in knowing that we all understand and are here for you, you aren't alone.

Heidi

Julie,
Thank you so much for all of your kind words. I am looking forward to getting to know you all.
Kim

Heidi,
You are so sweet. Your website is already a big help. Keeps me from getting too wound up about all that is going on. I just needed to find a place that helps me focus on what is good and that I am going to be ok.
Thank you again...so much!
Kim

Hi Kim, and a hearty

I sure hope I will be able to go through years and years of a remission!! That sounds so good. I am still a newbie in all this, I had my lp shunt installed Nov 1st of last year. We are still trying to get the adjustments/meds right. It's an ongoing work in progress for me. I sure do appreciate having the programmable, adjustable anti syphon valve though. I suppose you'll be having one on your vp shunt.

Looking forward to hearing more of your journey.

Thank you so much...I am not sure about the programmable valve. I have a doc appointment on the 24th with the surgeon who is putting in the gauge and not sure when the neurosurgeon wants to talk to me. I have several questions for him though...one being how long in the hospital and how long recovery. I want my life back!!!
thanks again hun
Kim

Kim, have a good look around the site about the types of shunts we have had, our ordeals as well as good ideas too. A lot has changed in the last 20 years. There are so many variations so try to learn about your options. Check with your docs. I guess some of them get stuck and only install certain brands and types. I really like the "idea" of the programmable valve because it regulates your pressure more evenly.

I didn't meet my neurosurgeon until the morning of surgery :shock: . But my case is so different than everyone else's anyway!!

I will sure take a look around...thanks so much. I have met my neurosurgeon and just love him. One of the best docs I have ever had and trust me I have my share lol
Just have a few questions for him but he has gone through most of it with me already.
Kim
:flower:

Hi Kim! Sorry I'm a little late in extending my welcome, but I'm so glad you've found us! I know the amazing folks around here will be a great source of support for you as you go through this next phase with your IIH treatment. And I'm sure you will also be a wonderful resource for those of us who are newer to living with IIH. It gives me hope to hear you share that you were able to have such a long period of remission with your shunt! I can imagine it must be so frustrating for you to have to deal with all the IIH symptoms again ... sounds like you've got an amazing doctor though, and will hopefully be getting some relief soon. Hang in there and remember we are here for you! *hugs*

Thank you so much hun
I know how fortunate I really am to have a 20 year remission. I was fooling myself ignoring this disease. I know throughout the 20 years there were many things that happened to me that I know recognize as PTC issues and I just ignored it. Silly I know!
But that is ok...I am not in denial anymore and I am not going to take this disease lightly anymore. I am hoping this shunt will be the start of getting my life back.
I have been homebound now for over 3 weeks. Can't do much around the house, can't drive and anytime I get up to do anything either my back goes out or my head hurts so bad I want to claw my eyes out lol
With the surgery in 15 days I know I can do this....
There are so many things to deal with when you are this sick....
Dealing with no paycheck going in every other week....and still haven't received a STD check...and how do you pay bills? ugh...
My daughter and granddaughter live with me and I worry how I will take care of all of us while I am getting better....
It is just so overwhelming but I really do appreciate all the support you all are giving me here...you rock
Kim