Friday, September 21, 2012

Neurosurgeon, Vit B12, tattoo..

I saw Dr.Bragg (neurosurgeon)  yesterday and before the appt had MRIs (thoracic and cervical) and then the Flexion/Extension Xrays my Pain dr had asked her to do. The MRIs went fairly quickly although having to lay flat im not sure what was worse the headache that goes along with that or the feeling as if I am trying to breathe from underwater which brought me pretty darn close to anxiety which ive not felt that uncomfortable I dont think breathing wise ever during a scan. Yikes!!

Dr.Bragg said she didnt think there was any area of pinching in the upper thoracic/lower c-spine (which is good) and she was going to have her Radiologists review the imaging to double check if they saw any areas of inflammation or other problem. I am not sure if this is the same level the thoracic portion of the LP shunt started at but it is lying at T7-8 (about the level of a bra line). She mentioned when we did the lumbar MRI back in May after we had put the 2nd (LP) shunt in that there was blood product in the area but she didnt think that would be causing the nerve irritation we've been trying to sort out. She is going to think some more on what options might be but the 2 things she talked about at the appt where to possibly move the base of the lumbar catheter to a higher insertion site away from all the previous lumbar surgeries and to use her words "out of the mine field." (aka where all the scar tissue is) Or she talked about opening up a space between the 2 ventricles where my VP (brain) shunt is so CSF would flow more easily to the VP shunt I guess as I think she thinks this CSF may not be communicating well (but i'm not positive on this as she talked about it only briefly.) 
To try and avoid the symptoms I have been getting anytime we do either shunt taps or depress the reservoirs (to check CSF flow/shunt function) for the past few months she tried a slightly different approach in the hopes I wouldnt get so sick later on. Usually it takes several hours after we do either of those things for any symptoms to come on so atleast I am usually home by that time but last night I could tell the odd symptoms ive gotten literally anytime we do either of these two tests (symptoms I didnt get when I had just the 1 shunt and we'd do same simple tests) where creeping up. I stopped at the store in town really quickly and from the point of walking in to the point of walking out (no more than 10 mins) I had chills, presumed fever and shaky feeling. By the time I got home and got changed in to my pajamas I was literally shaking I was so cold and achy. I took some advil hoping that would help the fever and thus chills and laid down for most of the rest of the night except for getting up to throw up which was about 1/2 a dozen times I guess. Today I am chilled and body aches from low back to upper back and tired but thankfully the worst is over yet again. I just wish I knew what caused this to occur. Dr.Bragg thought when I first told her about this a few months ago that maybe either of the 2 tests causes a temporary occlusion and so we've tried to only tap the shunt or check the reservoir when we need the info. Yuck!
 I am to email her an update and call her in the next wk or 2. I was only half laughing as I was leaving her clinic that someday I would stop "coming to visit" her and she says to me "You always have an open invitation to my clinic". I am glad she isnt worn out (apparently) on my never seeming ending shunt issues and that she isnt jaded, I hope she always keeps her ability to make me feel a little better about all the crappiness w these 2 shunts and her desire to help as I really struggle sometimes having to ask her and her team for help and admittedly do worry a bit at times that she'll get frustrated. I am human I guess is all I can say and when you find a good provider you just want them to cont liking what they do and not minding working with you!

The other day my PCP had sent me a message along with the EMG results that she wanted to test a few different lab results including B12 due to some changes on the EMG and Nerve conduction test so I did those while I was in her clinics area on Weds. She sent me a note yesterday that the B12 came back very below normal and she was going to call in replacement med for this + this could be the cause of some of my symptoms like various nerve issues. Who would have thought!?

Due to being so sick overnight and not feeling all that great yet I am rescheduling the tattoo I was supposed to get today (top of foot, an awareness ribbon for MPS) as I feel pretty crappy for yesterday afternoon and over-night yet and not sure driving an hour there, getting the tatt and then driving back is a wise idea. Kind of bummed about this though as I am looking fwd to getting this done (or more specifically AFTER it is done! :)

I'll update again when there is anything new,
Thanks for stopping by,


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