So I haven’t been on because I’ve been catching up on my life :). I have a surgery date in July and my nl is sending me to a “research” neurologist. I have weaned myself off the topamax and for the most part quit the every four hours hydrocodon. The wonderful news is that I have very little pressure and neck pain, it’s there sometimes but not in any way wrecking my life. Ibuprofen 800 for the most part and occasionally a pain pill maybe one every other day if that and really I take that because of the thorasic stenosis. I’m wondering if for some reason out there my 4 month bout of pneumonia that started all this could be my culprit and not so much the chairi ohohohoh I’m also doing yoga to try to start getting fit again. I’m still very unsure about the surgery now because I’ve been getting better for a couple of months some things are permanent I think but right now I feel surgery would open a can of worms that I’m in such a good place. If I could just somehow manage the headaches and neck burning. I want them to really look at the pneumonia angle I was mistreated by my gp for three months and for four or five months I ran fevers the highest one we took was 104.8 and there were three to five days of that the rest it would spike and hover for months around 101 and I run a lower 97.2 temp. I just think since I’m recovering but have some permanent body and brain damage the pneumonia is the root of it that’s where illness began. So what are y’all’s thoughts?
What did your CINE MRI say? Is your NS recommending the surgery because of MRI results or because of the symptoms you reported? I think if the MRI shows your flow is blocked you might want to get closer to the surgery date before deciding to cancel! Just my $0.02!
So glad to hear you are feeking better and getting back to your life! :) That's an excellent question, and though I don't have an answer for you, I've been wondering the same thing myself. Did you have any symptoms before the pneumonia? The reason I ask is that I have had Chiari symptoms for years and they had been getting more frequent, but after I was hospitalized with bi-lateral pneumonia back in August, my symptoms became much worse. I've been trying to research the pneumonia connection myself, but haven't found anything. I'm sure that all the forced coughing they were making me do in the hospital did not help matters. It was so bad that the nurses would have to hold the spit cup things for me so I could hold my head while I coughed because it hurt so bad. Felt like my head was going to explode! Sorry, tmi. At the time I did not know I had CM so I thought it was just the pneumonia. I'm sorry I don't have an answer for you, but I would like to know if you get any answers. Good luck in your search for a connection.
Take care and I hope you continue feeling better!
Actually I’ve NEVER been a headache person but about three months before the pneumonia I got a pressure headache that literally never went away just got worse or better. I called my family dr and they said it could be allergies well then I got pneumonia and went in and it was horrible and I finally ended up at a pulmonologist because three months into having pneumonia I couldn’t breath and had pluresy. Then another eight weeks later he finally gets the pneumonia under control but my lungs are damaged and I start having all my cognitive and physical symptoms and still am taking shallow breaths because its painful to breath. He sends me to a rhuematologist and the rest is like most of you:). Here I am a year later and the pressure headach is still there along with cognitive and spine damage it’s so crazy
Have they tried Klonopin for the neck burning and Fioricet for your headaches? They both work very well for me and I have tried everything.They also don't have crazy side effects like other medications used for both. I would put off surgery if at all possible. I am so glad you are doing better. Was it Viral or Bacterial Pneumonia? Pluresy is very painful. I am so sorry you were so sick.
Hey Tracy!!! The pneumonia was when my symptoms started I was on topimax (which I weaned myself off of because I’d rather have pain than those horrid side effects AND the damn things didn’t even make me lose a pound lol just went to my new nl today and she is wonderful she put me back on lortab (I had taken myself off of those also because some nasty pot stirrers decided I was an addict. So that day I heard the family rumor I went off and my dr called in tramadol). Tramadol and some new one I don’t know how to spell it but it sounds like nopatriptiline??? Haven’t started that one yet. I do feel better that or I’m just pushing through it not sure which. But a lot of my symptoms are gone or occasional. Surgery still scheduled for July