Saturday, February 9, 2013

Too sum it up... A Frustrating week

What a week?! I am sorry for not updating I just havent been feeling very in the mood and hasnt really been alot to say other than this week has been trying emotionally. Ive "fought" in a sense with my parents bc ive been crabby about people asking how I am doing or whats going on which isnt fair to family especially and I feel badly afterwards after ive gotten upset. I hate being upset, I hate being tired and thus so much shorter tempered about stupid questions and in many cases even reasonable questions. It is hard being here in the hospital, sleeping ok but not super great. Anytime anyone wants to come in they can be it the aides, the hospital pastor, or whoever doesnt really matter if very tired or in the middle of something. I appreciate everyone who stops by but w the hosptial pastor or friends it is definitely easier to be given a heads up!

So the only real change this week is Dr.Bragg talked to Dr.Bratanow my Pain Mngmt dr and they are not working together. Dr.Bratanow texted me this morning to see how things where going and then after Dr.Bragg stopped by and said Dr.B had just called her + given her a few med suggestions. We are going to play around w the lyrica dose and then the topamax dosing. Yesterday Dr.Bragg had asked me to touch base w anyone I knew who might have suggestions for her on the shunt issues and so ive reached out to a few drs. I also was given the name of a Metabolic (Genetics) Neurologist formerly from Baltimore area now at UofMn who I in turn emailed and heard back from soon after yesterday. He admitted he did not have alot of experience w MPS I but recommended I look in to the IT Aldurazyme studies (taking the enzyme replacement and injecting it intrathecaly or via the spine) and also I think was going to look for info. Several other drs have also recommended  I consider the Intrathecal study for my shunt issues and have the aldurazyme injected via reservoir in to the shunt + then re-adjust the valve to a higher almost "off" like setting for a few hours + then after those few hours the valve setting would be re-adjusted again back to the original setting. Dr.Bragg when she came in today said it was worth looking in to and she could replace the valves I have in my current shunts w ones that would be more appropriate for this type of treatment.  Obviously we dont know if I would  be eligible but I am already in the cognitive function Neuropsych testing study at UofMn and in the past have demonstrated on those tests memory issues if not other issues that might qualify me. Another portion of the study is taking a dye and injecting it in to the spine to see if it travels to the brain and down the spine in a certain amount of time which would demonstrate if the Intrathecal injections would even work. That said if we could get approved for the study and passed the tests we would try to get IRB approval to do the IT injection via my shunt reservoir. When I was in the original IT-compression study we had gotten a special IRB approval to do the injections via a cisterna magna tap (at the base of the brain, more risky) and so I would think this could get an approval to. So stay tuned and we will see how this all turns out.

In the mean time I am still in-patient and truly hope to get out soon.I am unsure what Dr.Bragg's plan is but cant believe she isnt feeling frustration at these shunts too, I sure am. =/  I truly hope she doesnt give up - I tend to think she wont but yah never know.
Thurs we turned the TPL shunt down to 1.0 and then fri late afternoon we turned it down again to .5 with mornings comtinuing to be the hardest of all of this. Its a shame I cant figure out how to just avoid mornings. Symptoms ive been experiencing include the headaches (way worse in the morning), nausea, some vomiting, very odd (but not new to this time) double vision and fuzzy. Turning down the shunts helped a little with the 'throughout the day' symptoms but not the morning headaches.  I have been reading alot trying to learn more and if nothing else I do think ive learned some.

About all for now, thanks for stopping by... See below for a short paragraph from earlier in the week..

This was written earlier in the week of Febr 2nd -
Whew, it is 2 days shy of being a week out from the last shunt revision (changing out the TPL shunt valve) and it has been a hard week; the weekend was better but the past 3 days have been harder and pretty hard. Headaches, nausea, some throwing up (IV zofran), and other symptoms have made it a plain hard week topped by struggles feeling like I am disappointing my parents bc I know they want me to feel better and come home. =/ I want to come home to but above all I just want these shunts to work better.


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