Took the leap; tattoo..

This is the tattoo I got done on Tuesday, ive wanted to do it for a long time but put it off bc of not feeling all that awesome and finally decided feeling great or not I wanted to do it, to do something for myself and so I did! :) I thought it might hurt worse than it did but really in all honesty wasnt that bad other than a few moments where my foot was jumpy but that wasnt painful just "jumpy". :) I like it and the colors now are actually brighter so the updated picture is below.

 

 

I talked to my neurosurgeon's (Dr.Bragg) nurse today (thurs) and Dr.Bragg wants to tap the shunts so that is going to be on Tuesday which I am not really looking fwd to as since ive had the 2 shunts in place (with benefit just some problems too) anytime we monkey with the reservoir or tap either  of the shunts I get sick for 12-24 hrs after with fever, chills, throwing up and really, reallllyyyy stiff, achy joints which are incredibly no fun. I just hope we can get answers from this bc even since last week I feel pretty terrible even during the day which isnt great.  =( Appetite and stomach are always some of the signs to me that somethings not 'right'. =/ Argghh, have I said how much I dislike shunts?!?  Because I seriously hate this!                                                                                          

 

I am teaching sunday school again this sunday and feel so un-prepared. I am adding to this a day later and spent a few hrs today finding a few activities to go with our sunday lesson (The Fall of Jericho) and reviewing everything so hopefully it will go well. I wrote down copious notes for myself as I have to review things over and over and over again to be able to remember my thoughts and having notes to go with each lesson and acitvity oes help. We had a monthly meeting w the pastor heading up SS and most of us teachers last night (weds) to go over the lessons for Oct which was interesting, informative and actually I learned some things. Those things though make me feel like I am hopelessly in over my head at times! :) I am guessing I will find a groove and feel more comfortable the more I do this and it is nice to be sharing sundays w the other teacher so the following week I will have off and so Zander will likely spend the night as i'll go to church Thurs night given we have something going on, on sunday I want to do.

 

Otherwise it has actually been a fairly quiet week here which was pretty nice as I was feeling pretty aweful in the mornings and through most of the afternoon most of these days and just nice to be lower key and get some thing done around here. I think the insurance provider changes are finally settling down and I just have two new providers left to meet in Oct but tests are already done for the 1 and the other the testing is the same day I see her (urology). I am staying w my current Pain Mngmt dr vs going to the one I met and using my secondary insur to see her and doing the same w/local PT as it was ridiculous to be driving over an hour for a 30-45min weekly PT appt when I can use my secondary insur and go 15mins away. CRAZY!

 

I'll update sometime next week on the neurosurgery appt. =/ Hoping it goes well with few side effects after this time.                                                                                                                                          

Thanks for stopping by,

 

Erica

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,

Erica