Thursday, August 18, 2011

Understanding the unknown..

The hardest part of MPS has definitely always been those points when your in the middle of medical care and yet you don't know what the next step in treatment is or what the future holds as far as decisions go with your drs. Right now I am really struggling with this - struggling to put my hands at God's feet and let him take this where he may. Struggling ro understand this whole headache situation and struggling just especailly in not knowing what may or may not be ahead. I really struggle with not knowing what my drs are thinking and if they really believe me and am I being an ok patient; assertive and questioning but not overly annoying and burdensome on their time. Ive always been the type of patient if I have information and an inkling of what may be then I feek at ease - atleast a plan although it may change is a plan - it is this change and change again planning that I struggle as a patient to deal with because I like atleast some control and like knowing I suppose....

I am coming back to this post after having talked to my neurosurgeon and her NP (another of her team I have not met often but really like) and feel somewhat better about this all. I talked to her about my nerves with this on-going issues with the headaches and my basic fear that I would lose her to given my issues in the past w/keeping and finding good neurosugeons who really wanted to be a part of my team. She immediately responded saying that we where a team and she had no plans to leave me or abandon my care and that she would be with me every step of this way and she and I would start with the least invasive measures to try and get answers.  I adore her for this - I told her about how those of my providers who have spoken with her and/or her nurse Lisa also have all commented how well they like her team and that they thought she seemed like a really great dr to have on our overall care. She and her NP Sue both seemed really happy about this and to me it only seems fair to return a small ounce of how well they are liked considering how much she and her team have done w/sticking by me in this all. I wish all patients could have a dr and team like this!

Her plan is to cont to the ICP monitor and she commented how she could definitely see a difference in the ICP readings when I was sleeping/lying down as they rose vs when I am up-right and correlated to my headaches. When I am upright my readings are actually often in the negative numbers from 0 to -9 is highest we've seen but while most people would have a low pressure headache from this I get relief from the increased ICP readings laying down. I guess I always have to be the abnormal---- she did talk about this though the other day (the 1st of any neurosurgeon ive met!) that some kids and adults do better with very low ICP levels that would make other people have a terribl low pressure headache. She talked about draining off fluid this afternoon to see if my H/A's go away completely and when I talked to her about how the H/A's have been different since this monitor was put in she said some people get a little bit of relief after these are placed.  Tomorrow morning we head back in to surgery this time with the general surgeons at 7:30 and she and the GS will laparoscopically look at the peritoneal catheter and see if it is scarred or clogged in some fashion preventing adequate CSF (cerebrospinal fluid - or the fluid that bathes the brain and spinal cord) from draining as well as it should be. If it is malfunctioning im not sure what the plan is - im also not sure what the plan is if she/they dont find anything. Im less nervours but still nervous - cant help it - usually this stuff doesnt get to me but it's not the medical part that is getting to me it's the uncertainties!! I do still fel atleast better after talking to nrsgn about overall her involvement bc she has been such an integral piece even in such a short amount of time. (few months!)

I will post again when I know more  - thanks for joining or reading this blog and any prayers are always welcome!!


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