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.
Erica
Saturday, February 9, 2013
Saturday, February 2, 2013
Revision #25 - TPL shunt surgery
We opted to tao the TPL shunt Friday morning and was not flowing so Dr.Bragg suspected it was either an intermittent occlusin issue or the catheter was just not working due to being blocked. We kept the OR time and te 2 Anesthesiologists I had opted to place a arterial line this time for which I stayed awake through most of and then they gave mild sedating med after which I dont remember the rest. As far as intubation they used the same equipment as previous surgeries w the lighted scope and device to help visualize better. Dr.Bragg when she stopped by this morning talked about how she can now tell the Anesthesiologists exactly what equipment will help as she isnt usually familiar w this + the mechanics of whats going on. She talked about the Anesthesiologists told her I have the aitway of a severely obese person due to so much extra tissue (tonsils/adenoids where taken out as a kid) probably caused by the mucopoilysaccharide storage. The limited opening they think is probably also likely from the MPS storage.
As far as the actual Thoracic Pleural shunt surgery revision Dr.Bragg told me she opened up the area and initially thought she would have to dissect down to the catheter (I am unsure if she ulimately ended up having to) to free it and replace this as it wasnt flowing at all. I think she said she manipulated part of the shunt some that was closer to the surface (?) and after a bit this would flow then stop, flow then stop confirming her suspicion of intermittently occluding due partially to not enough back pressure. (the pressure in the lung is alot lower than that of say the normal drainage point, the stomach so the catheter is more likely to occlude and thus ultimately (I guess) fail. She must have moved the catheter some and un-coiled it from the round-about way it was initially placed, shortened it (?) and secured it with a metal type clip. I do have to ask if the clip is titanium or is it actual metal for future scans. I imagine it is titanium. She commented she would like me to have help putting on a bra (fastening it behind my back to which I said I cant reach behind me and do already turn it around to fasten it then re-position to behind my back.) Showering i'll have to be careful w washing my hair over my head as well as reaching for objects she said; I am unsure why but will try to remember to ask her tomorrow and think it may be she is concerned that anchor will come loose and the shunt move? Right now any reaching doesnt sound appealing so will find other ways to get things.
She also wanted to leave the setting on the programmable valve blinded so she can adjust it and if symptoms say improve w the setting at a higher setting (5 choices to set it at overall) it would help her know that say the valve at high resistanc, lower drainage helps keep the catheter open better or lower setting, higher flow helps headaches but intermittently ( think I got that right!? on-the-less we will see. We also talked about the low pressure hydrocephalus article I sent her and which she had a chance to read + she said the reservoirs work well for people who have enlarged ventricles but bc mine are so small the risk of bringing brain tissue/debris in to the shunt catheter is high (similar to how we had reservoirs last year w the VP shunt valve nad reservoirs for testing the shunt.) and thus occlusion/failure is high. I think she wished it was an option; I sure do!
Will update if or when there is anything new,
Thanks for stopping by - please keep a family friend Sue in your thoughts as she lost her husband earlier this week and I cant imagine the grief she feels.
God Bless,
Erica
As far as the actual Thoracic Pleural shunt surgery revision Dr.Bragg told me she opened up the area and initially thought she would have to dissect down to the catheter (I am unsure if she ulimately ended up having to) to free it and replace this as it wasnt flowing at all. I think she said she manipulated part of the shunt some that was closer to the surface (?) and after a bit this would flow then stop, flow then stop confirming her suspicion of intermittently occluding due partially to not enough back pressure. (the pressure in the lung is alot lower than that of say the normal drainage point, the stomach so the catheter is more likely to occlude and thus ultimately (I guess) fail. She must have moved the catheter some and un-coiled it from the round-about way it was initially placed, shortened it (?) and secured it with a metal type clip. I do have to ask if the clip is titanium or is it actual metal for future scans. I imagine it is titanium. She commented she would like me to have help putting on a bra (fastening it behind my back to which I said I cant reach behind me and do already turn it around to fasten it then re-position to behind my back.) Showering i'll have to be careful w washing my hair over my head as well as reaching for objects she said; I am unsure why but will try to remember to ask her tomorrow and think it may be she is concerned that anchor will come loose and the shunt move? Right now any reaching doesnt sound appealing so will find other ways to get things.
She also wanted to leave the setting on the programmable valve blinded so she can adjust it and if symptoms say improve w the setting at a higher setting (5 choices to set it at overall) it would help her know that say the valve at high resistanc, lower drainage helps keep the catheter open better or lower setting, higher flow helps headaches but intermittently ( think I got that right!? on-the-less we will see. We also talked about the low pressure hydrocephalus article I sent her and which she had a chance to read + she said the reservoirs work well for people who have enlarged ventricles but bc mine are so small the risk of bringing brain tissue/debris in to the shunt catheter is high (similar to how we had reservoirs last year w the VP shunt valve nad reservoirs for testing the shunt.) and thus occlusion/failure is high. I think she wished it was an option; I sure do!
Will update if or when there is anything new,
Thanks for stopping by - please keep a family friend Sue in your thoughts as she lost her husband earlier this week and I cant imagine the grief she feels.
God Bless,
Erica
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