Friday, September 2, 2011

shunt News

Earlier today the nurse from the orthopedic hip surgeons office in Mn called just to check in and see if there was anything they could help with - ive not met this Ortho yet but we've communicated via email (he is one of the MPS docs) and they where/are aware of the shunt issues going on and that ive kind of been trying to sort those out before I reschedule this hip appt. Anyways she just gave me her direct line and told me to let her know a few dates that would work for my schedule when I was ready to come up and she would make it happen. Just thoguht it was nice that they would fup especially given ive not met this provider yet and I know he is  very popular dr amongst MPS pts and in general. 

I also heard from my neurosurgeon who emailed me as there appeared to be some connection issue when she tried to call my cell (I only use the cell as im not home enough for it to make sense to have a home line to). Anyways i'll copy part of her email below because it explains her ideas far better than I could in a concise but easy way and while asking if I was ok with the plan. The hardest part of healthcare is waiting like ive said before because of the unknowns but on the flip side the best part is providers who want your opinion and input! There are a few things I have a question or two about but nothing earth shattering on my part or that I disagree with - she's a pretty fair and patient oriented doctor! So see below for this email - I wouldnt normally post an email like this but in this case it doesnt really given identifying info and is good information in general I think for MPS families especially to have.

I was waiting to hear from one of our neurologists to see if he could meet you next week with me.  I read over your previous surgeon's notes and they sound very similar to the troubles we have been having.  I do wonder some about the original diagnosis of pseudotumor, but am also convinced that when drainage is working well, your symptoms do resolve (as I have seen myself as well).  I would like to get Dr. Hs opinion because he also helps us with many of our complex shunt patients.  He has extensive knowledge and background in mathematics and can help us figure out if this is a valve issue or simply a pressure issue that isn't being resolved with the LP shunt.  In reading the notes, it doesn't seem like the effects have been long-lasting, as in our case as well.  I still feel that it isn't unreasonable to place an external drain (in the brain) to allow for drainage of CSF and to correlate your symptoms.  I do think that if we do this, however, that we should tie off the LP shunt so that we get accurate information.  We would also monitor ICPs again. 

I think we can try to coordinate this soon (within the next week), but I would like to have you meet Dr. H before hand.

Is this OK with you?

I promise to keep you updated as soon as I hear from him. I do apologize that it took me longer to get back with you.  I appreciate your patience especially when I know you are not feeling well.

Talk again soon

I'll update when I know more but in the mean time am hoping for a nice weekend with little rain for the car show tomorrow and flea market sunday - love, love, love these! Hopefully will be feeling atleast semi-ok!


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