Just a quick note that I spoke with my neurosurgeons office this morning and neurosurgeon is out at an outreach clinic on weds but was going to try her hardest to give me a call today - or otherwise if not today then perhaps we can catch each other tomorrow - I am hopeful she will have some cont'd ideas as these headaches are exhausting ie literally make you very tired some to do with the autonomic secondary affects of the pressure itself. Ive also been trying to read various articles I can find on intracranial pressure issues and hydrocehalus over the past 3 or so days in spare time and have come across some really interesting articles that have made me think of some interesting questions. (one question I have is if ICP can be different in different regions of the brain ie could the ventricles have higher pressure (especially in MPS pts due to the build up of GAG storage on the vetricles making them rigid) than say the parenchymal areas of the brain which from what I understand is the area underneath the skull that bathes the brain in Cerebrospinal Fluid (CSF)? This is something I wrote down to ask and am very curious about.
Monday I did in fact make it to madison for the MRIs quite early with the first ones originally scheduled at 7:00am and arrival time at 6:30 which required getting up at 4:00am due to living about an hour from the hospital. Needless not to long after getting there many patients who where also there for MRI where getting called in ahead of me and I was waiting and waiting and waiting so I went up and asked the secretary if something was going on - long story short one of the MRIs was down -apparently UW only has 2 and I happened to be scheduled on this 2nd MRI so they wanted me to reschedule - when I told them I did not live in town and 2. more importantly that my neurosurgeon wanted these images very soon they then asked me to wait a few hours (why not ask the patients scheduled after me to wait instead of me having to wait while patients after me but on the different machine got in???) - well needless not only do I live outside of UW area but I needed to get down to CHW another 1 1/2 hrs away for my monday weekly infusion (and mons are the only day we can do the infusion) - I was a whee bit frustrated by this point but 2 1/2 hrs later they came up with some solution and I got the images (cspine and brain) done and talked to CHW genetics and they said it ws fine to come late if I could get there by 11. On my way to Milw I hit a traffic jam and mde 1 mild wrong turn but pulled in with minutes to spare. By the time I got home mon night I was exhausted and was in bed by 6:30-7. Crazy day!
Today I was at UW again although one of their clinics on the west side of madison and seen the GI docs about the bowel issues post-may's surgery (neurologic related likely similar to the bladder) and will upate on that a little later tonight or tomorrow here but in the mean time am running off to my sisters for supper. I also have to write something about neurologist as very confused about this whole management.
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So I am back and had a lovely time catching bugs with my nephew and talking with my siste while also watching Z interact with Bella my little neice - the changing dynamic there now that she crawls (7mo) is so cute and Zander you can tell likes to try and be helpful.
So about the neurology thing I am really confused normally I would see my neurologist every 6 mo and tomorrow was to be one of those appts. Her office called today to cancel saying my neurol. didnt feel I needed to come in (all for consolidating but there are alot of things this dr helps with separate from the headaches) bc my neurosurgeon was managing the shunt issues. I am very confused on who is supposed to be managing the autonomic side effects of this headaches as well as who is managing/watching the spine issues that occur commonly in MPS (for instance the spine issues at lower back probably it would seem should have been caught before my neurosurgeon got the surprise and had to unexpectedly deal with this problem on top of the shunt repair in may but bc no doctor of my orders MRIs or is managing these issues the problem was never caught. Genzyme the maker of aldurazyme recommends MRI films every 1-2 yrs and yet ihave all these drs and no one person managing them...I guess I am just confused on why neurology wouldnt workwith my neurosurgeon and as the patient with issues I know need to be managed what do I do? I am wondering what other MPS families do...
I will update when I know more - in the mean time I did start a different pain med last night nad weaning off of the avinza (long acting morphine) and MSIR though I can tell there does need to be some kind of short acting break through med with this patch. So far otherwise it seems to work ok - big problems that will be the bane of this use will be if I break out from the adhesive - the patch is worn for 7 days so I am hoping by some small miracle this will be one patch I dont react to as I do to almost all IV tapes, lidoderm, flector, tegaderm, and other adhesives. We'll see!
Please say a prayer I hear from my neurosurgeon tomorrow I am hoping so and that she has some other tricks up her sleeve to help.
Take care,
Erica
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