Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Just spent a week in the hospital after a very eventful two week stay in Ohio. Situation is bad. The hospital stay was a nightmare. I'm doing better, but, I've made no headway in finding out why this continues to happen and nobody seems interested in to finding the answer. Meanwhile it has become clear that my eyesight is worsening. The details are too many to list here, but, I'll sum up by saying that my shunt swells with too much activity with horrible headaches and vomiting. My NS in Ohio won't return my calls and no NS in New York will take on my case because my surgery was done in Ohio. For the first time in a year and a half my eyesight is worsening, and although the doctors see some swelling they are not willing to call it papilledema because it may be an "old swelling"...even though my eyes were checked a week ago and they saw nothing, but now they see swelling. And to top it all off, even though I'm symptomatic I keep being told my shunt works. WHAT? So that's my story...what's going on with TJ? Anybody know?
MM3
MM3
Your situation reminds me a bit of Caitri's. She has actually gone to intramuscular gravol every 4 hours to control her nausea and vomiting. I have learned to give needles - can't believe it. Her NS also says her shunt is working, but obviously not helping her. We have an appt tomorrow with a NS to talk about a venous stent. Her MRI shows that there is a narrowing where maybe a shunt would work. Will let you know how this appt shakes out.
You have been through more than anyone should have to. What is your next step? Remember, you have to be your own advocate, so you have to have a plan. I know it's tough, and I know it's the last thing you want to think about when you're feeling so rotten already.....but please fight for yourself! You deserve a better life.
Hugs and prayers,
Judie
Don't you see Dr. Katz and McGregor at OSU?
(((Hugs)))
Mer
I hope you are feeling a bit better and are getting some answers.
Know that you in my thoughts and prayers. I hope that you can get a hold of your doctor and get some darn answers cause this is ridiculous!!
TJ was on last week or so I believe.
Mandy
Yes...I do see Dr. Katz and McGregor at OSU. Unfortunately, I can't get in to see McGregor until the end of October and his group doesn't seem to take me seriously. I'm not sure if its because they feel like there's nothing else they can do, or if they just don't believe I'm having all these issues. As such, I intend to take my husband and other family members with me to my next appointment....because they feel the shunt when it swells and know of all my ups and downs. Dr. Katz has been out of the picture for awhile now as paps weren't my primary issue...but, now my vision or loss of vision is again moving to the forefront. I think they thought that I was just going to come back to NY and find doctors here who could take over my care. Now that this isn't happening, they are frustrated that I keep coming back to them and aren't sure how to help because I'm so far away. It's all just a big mess. I have a lot of frustrated doctors but they all tend to miss the most important factor, and that is that I am a victim in all this mess. I just need one person to step up to the plate and take charge of my care. The doctors here in NY say that I shouldn't have ever gotten a shunt because I was only getting relief from LP's for 12 to 24 hours, and because they didn't do my initial surgery they tell me I have to go back to OSU for care. Dr. McGregor says my shunt works just fine and I need to find a doctor in NY. Meanwhile, I'm not doing well. And Buttercup...your're right....THIS IS RIDICULOUS!
Thanks for your care and concern....It means the world.
Much love,
MM3
I'm ALIVE! I am doing much better than you it sounds. No HA but starting to have another peitoneal flair up. My NS just sent me an email yesterday asking me to call him, which I did. I may still have a bug or maybe not. Our plan is still to convert to VA if this flair up drags my ugly ass to the ER.
As fo you, ugh! I hate you are in this vortex of finger pointing and "sorry we can't help you". If I was back to visual problems (although I never had them) I would be screaming bloody murder to get help. Maybe use this as an opportunity to find someone completely new???
Wish you the best. You have my number if you need to chat. I am working tues, wed, thurs so it is easier to get me monday/friday or after hours midweek.
Keep your faith, Rasta vibes comin your way my friend.
TJ
You still in OH, Khrys? We're going to Kings Island on Sunday, would be good if we could catch up.
Hang in there, sometimes it all we can do.
TJ: So good to hear from you. Glad to know you're still alive and kickin', although sad to hear that your tummy is still putting up a fight. I'll try to call you. You won't believe everything that's been going on. So much to tell!
Bax: My dear friend. I don't know how you do it. You are so busy all the time...Love all the pictures of your artwork. Sadly I'm not still in Ohio because if I were I would do what I could to come meet you. Chris and I took the girls to Cedar Point at the end of our trip. I used to be a coaster fanatic, but decided that if I was going to do anything I'd start off slow. So twice I tried a couple of the other rides. Both times I got extremely nauseous and almost vomited. Still not sure if it was because of the shunt, the disease, or the fact that I had just had an LP a couple of days before. Either way, have fun at Kings Island...but, proceed with caution and listen to your body. I'm still paying from that trip. For the first time in awhile I tried to do some cleaning today....Now my body is paying for it. Very nauseous and feel like I've been hit by a truck. Uggghhh.... Would sure love to see a friendly face. Have fun with your hubby!
Much love,
Khrystine