Wednesday, June 26, 2013

Nothing we can do for now..

Didn't take long, no real surprise I guess but my stomach has stayed pretty swollen (think early preggo look) and seems to ebb and flow as far as how swollen it is throughout the day. At first I didn't realize that odd pressure or nerve like symptoms along the shunt catheter line (from mid-back to stomach) was more than likely related directly  to the swelling and secondary incision discomfort/pressure seeming in/around stomach and it seems related to CSF drainage/not absorbing properly? This I guess wouldn't surprise me as it is the reason we took the 2nd shunt out of the peritoneal area and placed it in to the newly chosen pleural space to drain back in Dec. Wasn't perfect but was a ton better than having both shunts draining to the stomach where I forever seemed to be having stomach spasms and issues. I know it's only temporary but sometimes when your in the moment of something and dealing w the symptoms a "temporary" change isn't all that easy like it likely would be if we where having no underlying adverse absorption symptoms and had changed the shunt only because of the infection or some other reason back in Dec and now had to change it back but worked fine. I am hopeful the heart surgery will go well and soon enough we can put the TP shunt back to it's former draining location. Dr.Bragg has talked about and again this morning that we will be able to do this and she thinks will just require 2 incisions (1 for the pleural space tunneling of catheter) and the other to disconnect the current shunt set up from the 'Y' connector as it can't just be pulled through. I definitely don't want summer over but can't wait till we are able to do this and maybe put an end to this seeming never-ending shunt saga! :)

I wrote this email to a friend earlier as she had asked how things where doing and if I thought i'd get out soon. I had fwd'd her something related to heart valves and minimally invasive valve replacement (interesting stuff!) which hopefully someday will apply to her case as well as mine and any other MPS individuals to avoid the 'open heart' portion of heart surgery! Here is the email and pretty perfectly sums up my frustration today and past few days:

I think we are sort of in a crossroads; we had to move the Thoracic pleural shunt back to the peritoneum (for the heart surgery as you've probably read) and had no choice about that but also where replacing the valve w what we think will be a great benefit as the particular Codman valve has worked really well in my VP shunt. The TPL shunt now being back in the peritoneum (TP shunt, lol) is causing grief of it's own with distended stomach and discomfort along the shunt tract I think bc the CSF fluid isn't absorbing properly (the reason why we had moved one of the shunts to the pleural space in the first place) and so is really uncomfortable and headaches worse than when I came in last Fri. Eventually after the heart valve surgery is healed we will be able to move this shunt back out of the peritoneum to the pleural space but for now I honestly am struggling w the thought that I could be going in to this heart valve surgery feeling really aweful headache and symptom wise and not to mention it could  be months until we can resolve the shunt issue and move it again. I truly feel like we get sooo close to being in so much better of a place w the shunts (we where closer before having to move it and think that the new valve would have been the tipping point had we been able to leave it to drain where it was) but then it's like a mirage, something always happens to stop actually getting to the 'finish' line'. Super disappointed and frustrated. I don't need to vent to you though, you get it.

We turned down the Thoracic Peritoneal shunt by 2 more settings today (tues) so it is now at it's lowest setting (30) and does seem to have made a bit of difference but no-where near enough. I just think the big difference is CSF not likely absorbing as well as it could.  I know it isn't my eyes directly but everytime I would try to read the past few days I had worse headaches and back to the really blurry/double vision. Definitely is odd to explain but was like where I would be  staring at the screen or trying to read and I would I get almost mind-numbingly tired and headaches. Since there is next to nothing we can do here I think I will be going home today; Dr.Bragg mentioned it and I agreed bc while i'd give just about anything to feel better and get to the "finish line" once and for all I don't see a point in being here if they don't know what to do w me right now. Soo very frustrating when you know what the answer is but can't do anything about it immediately!!!

Will update when there is something more, more than likely from home.
Thanks for stopping by,


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