We talked more about the bladder issues and she told me a little about what she expected urology might do testing wise and that she didnt think it would be to bad for the simple fact of not having sensation (nice way to put a positive spin on sucky testing there and i'll accept that!) She also thinks that this specialists will be able to help with some of the other bathroom related issues (ahh I simply cannot believe the info I have shared here - eeekkkss!!!! but there again in some way if it could help another family with living with MPS then I guess I can get past my squamishness about sharing!) . She also again mentioned having talked to some of her colleagues about what all is going on and all believe this is only temporary and will at some point return to normal - hopefully sooner rather than normal but time will only tell. I appreciate that she is willing to ask those she works with for their advice as it means she is not one of those drs who thinks they know everything and I love that most about her! We talked some about how my feet/ankles swell considerably by the end of the day (they look like water balloons) and she told me something about this being related to nerve damage but for the life of me I cannot remember what it was but also that as the nerves heal this to will/should improve. She took of the steri strips on my side incision and removed the bandages/gauze from my back incisiion and while there is still some stitches that havent dissolved on my back she told me I didnt have to worry about covering them for showeing and can also get them wet in other avenues (swimming!!!) as long as I am cautious and careful w/my body which I totally understand - heck I move at a snails pace so not to much to worry about as long as in the pool others leave me alone - we are a family known for horsing around so i'll just have to avoid that for now which may be hard but family gets it! ;) She talked about how on the MRI and in surgery she was able to clearly see that no nerves had been cut which is one reason she is optimistic about my regaining sensation/functions and she talked about that there is still a sac of fluid around my incision now but expects this will go down to - I think that is what makes it so aweful to lay on my back at this point! The other thing she talked about was the actual site of the bundle of nerves and how unusual this was + compared it to unraveling a cats ball of yarn and then sticking/placing each of the nerves back in the right places which is probably why it was/is so irritated. She just said this was extremely unusual and I think she said this was something she hadnt come across before but probably atleast partially due to repeated LP's and surgeries in the area. I follow up with her in a month she just said she "didnt want to abandon me' (very nice of her and her staff although I wouldnt feel they where either way) and asked me to let her nurse know on tues how the appt went w/urology bc while they would get a clinic note it's nice to hear from the pt how things went".. She mentioned she would be out of the office the beginning of july due to getting married but if i needed her for some reason she would be around and her nurses would be able to get ahold of her should any issues arise.
Other things coming up I see my Pain mngmt dr for the first time since surgery on monday after ERT (different hospital) and the urology appt (back at UW) on tues and a different appt thurs and this sun - fathers day is a car show - my Dad's 67 rebuilt custom chevelle is always in this and always nice with my brother and sister in law coming up and my older brother also tentatively planning to come as well as my sisters family and I. Should be nice. :)
Will update soon,
Erica Lumbar incision - most stitches minus a few have dissolved and fluid sac persists but should dissolve my Nrsgn said in time
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