Friday, September 28, 2012

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,

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,


Wednesday, September 19, 2012

EMG and Nerve conduction results..

My Primary dr sent me an emailk (mychart) with these EMG and nerve conduction test results. I was a little surprised it is quite this severe given the last CT releases where only 2 and 3 years ago and 8 years before that. I have had bilateral carpal tunnel releases in each hand twice now and the 2nd time was much more extensive in each hand than the original CT releases some 10 yrs ago pre-MPS dx.

To: Erica Thiel
Subject: EMG results

EMG report:
1) There is electrodiagnostic evidence for very severe residual right median neuropathy at the wrist (carpal tunnel syndrome.) .

2) There is electrodiagnostic evidence for a moderately severe residual left median neuropathy at the wrist ...
(carpal tunnel syndrome.)

3) There may be a mild underlying polyneuropathy given the presence of mild conduction velocity slowing in motor and sensory nerves. Clinical correlation is required.

4) There is no convincing electrodiagnostic evidence for a cervical radiculopathy on either side
This is the attached note she sent me with the results:
 In short you need to keep the appointment with hand clinic for the carpal tunnel syndrome. Are you wearing braces for that at night/during day? For the possible polyneuropathy we should check vitamin b12 and folic acid levels as well as for diabetes. I have placed the orders if you could come to clinic at your convenience for lab check. What are your thoughts? PJS, MD

Monday, September 17, 2012

It's a needle-y kind of day: EMG's, Nerve studies, and Botox

Another day of fun, just to much fun..

I wasnt sure the best way to send the actual x-ray order  and request from my Pain dr regarding her wanting flexion/extension Xrays of full spine (to nrsgn)  to have them done by my neurosurgeon (have nrsgn order them) and so I scanned it in to the computer and emailed it last night (is that odd? Do other chronic dx pts do this kind of thing?) and her nurse who I had also cc'd responded back this morning that the order was in and I could do it after the MRIs but before the actual appt on thurs.   I often wonder as I email or scan in to send via email various med records to some providers if its something thats requested or wanted is this out of the ordinary? A couple of my providers dont use email (they'll use their mychart systes) but the majority of my providers will communicate via email if its a non-urgent question or if sharing information from say another appt with them. I personally think if the pt is ok with it (as in my case) and doesnt mind the 'un-secure' records things then it shouldnt be that big of a deal to send a med record through email. Typically i'll try to remember to black out my MR number (but often forget) and tend to just think if it makes something work better then is the reward better than waiting for snail mail or fax? I do have a fax machine on my scanner/printer but dont use a home phone and in all honesty if someone intercepts the email under some small chance is it really that interesting really? A bunch of medical crap? I tend not to think so..  I know its a personal decision and dont care what others chose just for me I dont see a problem with sending via this means..

This morning I had the EMG done at Dean St.Mary's Hospital which was the usual loads of fun although I got the sense the Neurologist doing the needle part was a wee bit unhappy as that part progressed as he couldnt get clear answers.. (after 2 different releases on each hand and the tendon transfer I wouldnt expect personally for the EMG to come back with simple yes or no 'there's nerve damage/compression' issues going on..,) Maybe he doesnt deal with re-occurences of it that much?  Outside of MPS its not that common to re-occur I guess? He seemed a bit on the younger side so who knows maybe less experience w this sort of thing.. I should add he wasnt rude or anything and explained his concerns but you can kind of tell someone's personality (feelings) in these kinds of situations!  As far as what he all looked at and tested it ranged from the more 'routine' carpal tunnel compression to compression in the elbow (normal I think) on up to his concern was there lower c-spine nerve root compression below my previous surgery (C2-4) around C5-6 but he said this was fairly normal or atleast no significant issues from what I gathered from him? We know there is a very narrowed area in my upper thoracic or lower c-spine area (in the area near where the lumbar-to-thoracic shunt catheter sits which is in T8-9 or T9-10 I think right off hand.)  and although I dont know alot about that narrowed area its an area my nrsgn has had concerns about I think regarding the lumbar-to-thoracic catheter being below it. Thurs's MRIs if nothing else should help rule out the spine as cause of these carpal tunnel like symptoms or give us clearer answers although that isnt why its being done. (Nrsgn ordered it to get an idea where the shunt catheter is now sitting as that could also be the cause of the other nerve and spine symptoms I have if sitting against a easily irritated area.) Some of the symptoms my Pain dr was concerned about where short episodes of dizziness though havent been w/movement (so Pain dr didnt think autonomic) the leg symptoms with these being  'tired' when standing, legs falling asleep and painful when sitting, and other also on/off symptoms.
My prior hand surgeon who I saw back in April I think (before our insur switch)  and who did the more significant of the hand surgeries had said he didnt think an EMG would give totally clear answers so I didnt really expect to learn much from this.
The worst part of the EMG may have been when the same Neurologist was trying to get a reading of the nerve signal/muscle in the thenar area (base of thumb) which is where I had the tendon transfer done 2 yrs ago and which the muscle was pretty wasted before even this. He kept having to take out and move the needle and then wiggle it in deeper to try and find a signal but after about 5 mins couldnt get a good reading (im not sure if he got any) - YOUCH! I can take alot and can pretty well just bite my lip and not say anything and sometimes even still hold a conversation but this one I think the nurse thought I was going to pass out (I was laying down semi-propped up already which is hard enough in and of itself!) as she kept asking if I was ok and looking at me like she might pass out, lol.  Its over though and thats a good thing!
The Neurologist said he just couldnt gather enough info from either the nerve conduction part of the EMG itself and so couldnt say if it was carpal tunnel re-occuring through that alone but he presumed with the underlying visible damage, the symptoms/symptom pattern and same symptoms as previous CT issues he would write instead in his report what he didnt find and not what he thought of the overall testing. In other words he wasnt going to say it was carpal tunnel and he wasnt going to say it wasnt but that it wasnt clear it was from lower c-spine compression as he got better (if not perfect I guess) readings there than in hand but he presumed the Hand surgeon would assume as much given the history.

After this loveliness I went across the street to the out-patient center and saw the new Neurologist (a different one) who is taking over the botox injections previously done at FMLH by the PMR doc. She doesnt use EMG to do botox injections which just means she was able to use a smaller needle but not have as precise of knowledge where the worst spots where for over-active muscle issues. She was working off the previous PMR docs well laid out report so I think although she seemed to do less actual injections she likely did most of the same areas.
She seemed like she's probably nice and easy enough to talk to but you know how some providers you can quickly feel rapport with and feel like they are the ones you'd go to for any questions or to bounce a question off of even if the question is maybe not their specific area/field? I dont know about other people but I can usually pretty quickly figure out which drs will be the ones that are like this.  I think or tend to think a first appt sort of cements which side a provider will be and in reality out of about a dozen specialists I think only 2 or 3 are in the 'I think  I could ask you almost anything' category and further narrowed down I think only 1 (pain mngmt) is in the 100% trust for many more reasons than just this but even if I get irritated w her secretary on occassion she (the dr) has always believed and trusted me, stuck behind what she said and really gone out of her way to take on areas that needed someone to help with but no dr was really willing to fully manage. (before my nrsgn this dr did all the imaging and followed that stuff, did all the conference call coordinating (other than my Insur person), sent me to other drs if she thought they had something to offer she couldnt (botox for one, worked on the pre-cspine surgery stuff) and she un-failingly tried to help and (not that I expect ANY dr to do this!!!) she would call before surgeries or after surgeries to see how it went and if there was anything she could do and sometimes for no reason bc she was concerned about something that we had dealt w at a previous appt. She is the 2nd longest provider on my team at shy of 5 yrs, Cardiologist is 8 yrs now! Probably close behind her (but it would take alot to surpass her) :) would be my nrsgn who in just 15mo has endlessly been there to try and figure out on-going shunt issues, deal with after effects of some of the surgeries, coordinate care related to those secondary issues, answers any and all questions I have or admits if she may not know but tries to find out and if its some quick thing like re-setting one or both shunts she'll meet me in the lobby vs making me come in for an actual longer appt, does email and her staff is pretty AWESOME! :)  That aside I really do have many other good providers after many yrs of hiring, firing, adding and subtracting to the ones that did and didnt work or left. Its just some I guess get closer than others and sometimes I think its little things like they are interested in you as a person outside of "just their issue(s)" they treat/see you for, they see the big picture of whats going on (instead of just that area they treat) and (dont fall over) they want to help no matter how long 'that helping' lasts. :) I guess I got off the pt of this babbling though and was just that im not sure this time where this Neurologist will fall in the bigger picture. With my new PCP I sensed she would be interested in being more involved and helping and especially learned alot really quickly before I even saw her about the issues and seems to want to help wherever she can but in this case not sure how this chip will fall.. I will see the Neurologist every 3 mo for the botox (standard and insur approved 4 botox visits for the year so I imagine we'll get to know each other better in time it may just be a slower figuring out which is ok too!  If needed she apparently knows my nrsgn through a friend of hers (the neurologists friend) who sees my nrsgn too as she said to me she really liked Dr.Bragg and thought she was personable and good at what she does. Thats a good thing.

I'll try to update after thurs thoracic and c-spine MRIs, X-rays and appt with neurosurgery.
All for now, thanks for stopping by,

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Thursday, September 13, 2012

It is what it is....

Last friday I had to take a class (just myself and the endocrine nurse) in my neuro-endocrine drs office at FMLH and definitely "interesting".  The class was to learn how to self-administer the solu-cortef intra-muscular (this is different than say diabetic insulin which is given sub-q or under the skin) -drawing up the med into the syringe was simple and no trick there but the actual injection I tried of a empty syringe in to thigh muscle was even though I did it very quickly (vs hesitating which I think would only make it worse)  nothing short of a bit painful - I can only imagine having to actually empty 100mgs of medication directly AFTER the sting of the injection. Not. Looking. Fwd. To. This. At. ALL! Yah do what you have to do though really though. =/ The injection will be for periods of nausea/vomiting or when sick every 8 hrs to make up for the stress hormone (cortisol) I dont otherwise normally produce.

We heard from the Dean Opthalmologist that he recommended I stay with my  (Neuro)-Opthalm at UW  which is a good thing I guess; that fup is in Febr for repeat Visual Fields which is 6 months after the previous testing in August and other tests to be repeated although I am unsure right off hand what other tests if any she will do then.

Today was a usual once monthly fup appt with my Pain Mngmt dr and I had written down for her the various symptoms ive had recently some newer, some on-going since the 2nd shunt was placed. I'll also give the same symptom list to my neurosurgeon at next weeks appt but Pain Mngmt dr is concerned bc ive been having fevers with every time I throw up or have nausea which lasts for several hours each time. (ive also had the same symptoms as well as neck stiffness with every shunt tap over the past 3 months and also for numerous hours after of which my nrsgn isnt sure the corrolation but thought maybe it could be from intermittent clogging of the shunt(s) in those cases.) Ive had neck stiffness with those above symptoms and headaches that occur w any bending of my neck, worse w longer episodes of bent neck (I know dont bend your neck, but try not doing just that, its hard!). And my legs get very tired but not like 'norma' tired when standing or walking even for short periods, I have discomfort/pressure along lower back and numbness down legs worse on right side and worse down the back off buttocks and legs.  She thought from looking at my lumbar spine that there was an area that was more swollen or something than the last time I saw her although not CSF/fluid swollen, just swollen. She ordered flexion/extension X-rays of which she'd like my neursourgeon to do next week alongside the MRIs (see below). She also wants to rule out any kind of CNS infection which I really dont think there is one going on. The concern is multi-fold; are the symptoms caused by the narrowed area in lower neck/upper spine near the lumbar  shunt tip or is it nerve root irritation by shunt at some other point or another cause. Who knows.

Monday I see the new Neurologist for eval and then she is doing the upper spine, mid-spine and shoulder botox injections at the same initial appt (scheduled for an hour). Before this Neurology appt I have the EMG rescheduled at the same hospital and across the street.

I got an email from my Neurosurgeon last week and she is recommending c-spine and thoracic MRIs as she would like to see where the lumbar shunt catheter tip is lying, so those have been coordinated for a week from now. I see her an hour after the imaging to have both shunts reset and confirm imaging results. I want to ask her if she will help me fight my insur company denying my seeing the Ortho-spine surgeon in Mn, Dr.Bragg can manage any spine stuff and has done multiple lumbar surgeries for decompressions and shunt revisions/replacements but I feel more comfortable with neck stuff I think w a surgeon that has a vast amount of experience w neck issues in MPS I. Not that we think I need surgery but better to see surgeon bc of symptoms for fup and if primary insur appeal fails will fall back on my secondary insurance to see the Ortho-spine surgeon.  My Pain dr was slightly perturbed to say the least that the insur company didnt even try to get the importance of someone WITH experience in MPS dealing w upper c-spine issues vs how different that is than say my nrsgn who has a little but not a lot of experience w MPS having done surgeries on my lumbar spine which has been their argument why she can deal with any upper c-spine issues. I am sorry but just as Dr.B said I want only the best of the best as far as MPS experience goes dealing w my upper spine given how different the spine issues ARE in MPS pts vs in a Non-MPS pt who has the same issues and has someone with spine surgery experience but not extensive experience w the specific disorder doing a surgery.  (did that make any sense?) I'll talk to my nrsgn about it next week at appt along with the symptoms.

I agreed to help w sunday school sharing sundays w another teacher so we will do either every other sunday or she will do one month and I will do the other on/off schedule. I met the kids this last week and overall should be interesting... There are 6 kids and 3rd + 4th graders in our group. We are a relatively small church/school so I am atleast glad for that. I think once ive done it for a few weeks it will be easier and less nerve wracking!

Thats about all I guess, nothing to exciting. :) Kind of a boring person but although really chaotic and busy lately it has been mostly ok - I love what I am doing with GS and have had things going on every weekend + the weekdays have been really busy.
Thanks for stopping by,