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Quick update

Apr 05, 2017 9:50 AM

Hi guys,
Sorry life has been absolutely crazy right now. Basically my pseudotumor has come out of remission as of March 7th.
Have had another mri and MRV with contrast. Both of which show pretty much the same thing. Optic nerves very swollen,
Pressure very high. Meds not holding it down any longer. 3rd spinal tap scheduled for next Tuesday. Depending on what opening pressure is, we will go forward with surgical intervention(ie VP shunt or stent if veins are narrow).
Please keep me in your thoughts and prayers if you are so inclined. Headaches have been a killer for the past 4 weeks already.
And as of right now, I am off crutches and able to walk upright on my own without support. However, my orthopedic surgeon wants to see me tomorrow morning. Getting pain under knee cap that's a new issue with that knee. Not sure what happened to it or if I'm being over cautious with it.

Apr 05, 2017 11:19 AM

Oh no Amanda. Am so sorry to read this. Can only imagine how hard it is to be waiting for answers or plan of care.

Hoping the ortho surgeon has some good news for you.

Apr 05, 2017 12:13 PM

Welcome back Amanda it's been a long time and glad to hear from you.

Sorry that you may have to have surgery. I pray that the spinal tap works and that your​ knee is no worse than what it was.

Prayer's my friend as you always have them, just glad that you checked in to let us know that you are still around.

Apr 07, 2017 10:01 PM

I'm sorry to hear this Amanda, you've been through so much for so long! You are in my prayers, with hugs & love coming your way!!😊💕🙏🌸

Apr 14, 2017 4:07 PM

Mimi, she did have good news for me on the knee front. So all is well there. Opening pressure on spinal tap was 29 which was still too high even on Diamox. So that's not a good sign. There was 1 thing that the mri showed that my neurologist did NOT bother to tell me. I apparently have a Chiari 1 malformation which might have been caused by the IIH. Don't know exactly. All I know is that it shouldn't be there and wasn't on the last MRI report that was done in March 2016. So my pcp who is THE BOMB actually bypassed my neurologist and sent in a referral to the neurosurgeon for me along with the MRI reports, visual field testing and OCT reports. So not exactly sure if I'm going to be looking at Chiari decompression surgery, a VP shunt or a combo of both. I just have to wait until the consult appointment happens. Hopefully it will be happening here in the next few weeks. I just know there is a light at the end of the tunnel now and that the neurosurgeon they are sending me to is one of the best in our county so that's a good thing.
I am just so happy that somebody is finally listening to me. Also the damn interventional radiologist did hit a spinal nerve at L2 which sent spikes of pain down into my pelvic area and down into my left foot. But it seems to be getting better every day.

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