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,
Erica
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