Lumbar (external) drain, etc

I saw Dr.Bragg today and we are going to place the external lumbar drain likely the week after next although it will be done under/with interventional radiology due to the spine issues in that area and the difficulties they have had in the past with getting a catheter in to the lumbar spine + previous laminectomy. She also kind of wants to do some kind of  light conscious sedation but isnt sure anesthesia is going to go for that given the airway issues and commented that she didnt want to cause breathing issues but just a light enough level that I wouldnt remember. She was going to look in to that and her concern was just because of the size of the needle they use to place the external catheter for the drain as I mentioned to her ive been awake for all previous lumbar punctures.  Either way seems ok to me, I did do the Port-a-Cath awake and wonder if it can be to much more than that? And with the Port the IR provider also had to go through a bunch of previous scar tissue as he placed the device in a previous pocket that  I had a cardiac implantable recording device in; the only difference is of course with lumbar your going through/have the potential to hit nerves I suppose. We are looking at possibly doing the week after next as her nurse is out this week and Dr. Bragg is out of the office all next week so it might be  a little difficult to get it all arranged for that next week. Im unsure how long the drain would be in as in typical my not thinking fashion I didnt think to ask until later after the appt but imagine it really would  be dependent on the results. I also am unsure if she would place the LP shunt right away that same stay if the results where favorable/symptom resolution but from past conversations I had gotten the feeling she would; I can always ask her nurse this when I talk to her next week about scheduling this all and I can if really need be always send Dr. Bragg an email later on with that ques.

She asked if I could still hear the shunt draining and I said no to which she commented she wasnt sure that was a good thing or a bad thing but symptom wise I havent gotten worse since last week and this also isnt the first time ive been able to hear the shunt the first couple days and then not hear it after that. When she depressed the reservoir it was quick to refill as well which is of course a good sign to both of us. Im unsure just say that we do place the 2nd shunt and down the road I had issues again (heaven help us) how we also would know which shunt it was? These, my dear readers are just the questions I cant think of ahead of time and never think of during appts while we are talking! I think I am usually processing information and doing my best to remember what we are talking about that actually thinking of questions is not somethung ny mind can do, lol.

Earlier the week of 3/3 ------- ------       --------    -------- -----------          ---------            ---------   -------
I was reading another blog the other day and have been thinknig of this ever since; it's not a new thouhgt to me but non-the-less something that bothers me at times and something you cant help but think about at times. Obviously not everyone but alot of people assume if a person looks normal they must 'feel' normal and must not really 'feel' how they say. Or they must not really have issues like they say. I just always feel like my normal may not/is very likely not other people's normal and we as a society do a pretty pitiful job of listening to each other, judging based off of looks and assuming just bc of how someone is. . Saying 'you look good' might be meant as a compliment and i'll try to take it that way but sometimes it hurts when people cant look past the surface and just assume or outright tell you that you dont like other people they've seen (lol to that, bc what is that even supposed to mean!?) and so how can you even have the symptoms you have? As another blogger wrote "you cant see cancer", that doesnt mean it isnt there.. Well thats exactly what most of my issues are "they're still there".   As ive said before typically the worse I feel the harder im going to try to make myself look better; makeup, nicely dressed, cute shoes, hair done, etc. My schedule is never the same and is hard to maintain what I do with APFAN as these shunt and cardiac issues have been going on but I always try to have something I make myself do each day in addition to phone calls and paperwork for medical stuff. Somedays that is going to my nephews for the morning/part of the afternoon or his coming to spend the night here on weekends even if I feel really tired. Sometimes it's background stuff with APF or now small things with the ACHA group. It's variable but I feel much happier when I accomplish things for myself and need to do things for myself and wish people could understand that. What would society be if we all where the same and all did the same things, anyways? Do they think we who do have issues dont wish we felt good enough to go to a regular job or have a more predictable schedule? Sure, my life isnt your/their life but people dont need to say condescending remarks about "how nice it must be not to have to work" or "you wouldnt understand, you've never been in the workforce in a real job (i'd like to ask what working as a CNA was? What was waitressing in high school?) Lots of people are full time waitressess; just bc it may not be what you the person thinks is "good enough" doesnt mean we havent had "life experiences". In some ways I would just like to counter that ive likely experienced more in 29 yrs traveling for talks for MPS, having worked as a CNA, having waitressed, and meeting new people from all walks of life on an almost weekly basis with MPS and for APF than do many people who think they are "ooh so great" in a lifetime. As the saying goes; it isnt a matter of what you've done but the way you do it". (or something to that affect.) My point in writing this is just to make people stop and think before they say something. We all do it, I know there are times I say something and then I think about it and think 'wow, did that really just come out of my mouth?" or "how do I really know?"


The way I cope is by having information and being as prepared as possible about whatever it is I am dealing with and so although I dont always think of the 'right' questions at appts I do try to become as informed as possible before making decisions and I try to become a part of my provider team in making decisions and this in turn helps me to help others. It also helps me to feel as prepared as possible for new issues or changes and to feel like I have some sliver of control. Not everyone is the same and that is ok but I feel like the more information I have the easier I can rest about a decision and I feel like the better I can be turning around and trying to explain it to someone else. I definitely cope only becomes I can be informed about my care and because the decisions are made in the end by me with the help of providers and what they think.

3/3/12 -----
I saw the Hand Surgeon today and we're going to give it a month but he said it's a good possibility based off my last 2 surgeries that we'll end up doing more release/clean out work due to the   - tenosynovitis (build-up and inflammation). Tonight I have my one thumb that the tendon transfer was done on taped up as it makes it feel better and he wanted me to splint the wrists for atleats part of the time for this month so although I can only do tape for short periods it is easier to deal with and does make my hand feel better. I think he is a little amazed at the amount of build-up/recurrance that MPS causes as I dont think he's had any other MPS pts before and this would be the 3rd surgery on the L hand and 2nd carpal tunnel/synovitis release on R hand in addition to the tendon transfer that was done on that hand. Such joys. I do think MPS should only be able to strike one issue at a time! Wishful thinking, right!?

This is about it; will update when there is something further on any end,
Happy Easter!
Erica