I see my Peds Neurosurgeon (Dr.Iskandar) Thurs re his call w/Dr.Guillaume (UofMn Peds Nrsgn) a few wks ago.
I have exactly 0 idea what to hope from this appt other than we can figure something out..
This said talking to Dr.Bragg (my former Nrsgn, now in AZ but we've stayed in touch and she helps my team yet) she spoke to a former colleague of hers at UW AFCH re a option Dr.Bragg has long advocated I consider...
Dr.Bragg explained my case, our issues and the complicated problems we've had/have with to little space for spinal fluid/brain and needing to drain really low) to Dr.Mount and my need to drain at extremely low spinal fluid (CSF) pressures to feel/do best...
Dr.Bragg told me Dr.Mount apparently agrees the bone thinning procedure (surgery) is what we need, to help create more room for my spinal fluid and thus shunts to work better.. This would enable more room for CSF (spinal fluid) in my skull. If your thinking that sounds aweful well I agree and have thought the same for years!
I unfortunately avoided learning more about it the entire 5 yrs I had Dr.Bragg here (she'd bring it up from time to time, how she really felt that's the only way we'd get a longer term resolution to my needing to drain so low).
2yrs after she's been in AZ and its just been really, really difficult I feel like
I need to atleast need this other dr and learn about this possible surgery..
Right now there isn't enough room for CSF and I only feel really good when we have Spinal fluid (CSF) leaks.
The surgery seems scary but its actually not cranial vault expansion (where the skull is widened and reshaped).
In this surgery I guess per Dr.Bragg usually the front of skull bone is removed, thinned and then put back in place (w/mini plates and screws). Weird, right?!?
At this point I'm pretty sick of these headaches and the intermittent side effects + especially the affects this unintentionally has on my heart (to much thickened blood through the
❤ I guess can and is affect the mechanical valves and is what's part of causing adverse problems they suspect to my mechanical mitral valve now.)Dr.Bragg is going to ask Dr.Mount if it's ok I reach out to her + I'll talk to Dr.Iskandar @ Thurs's appt.
WTH right? Could it be any worse then the 3 Open
❤ surgeries? It wouldn't be touching brain at all and perhaps not as bad even as the many spine or actual brain surgeries I've had (a few of those where brutal). 
🤷♀️Nothing is concrete and everything could change so there's nothing for certain about this but I'm finally willing to talk to this other dr and get info if that is to be the case.
If in fact w/my MPS and lack of intracranial space/need for brain pressures to be very low this would help I just may finally consider it. (As mentioned above we know I feel best at negative ICP #'s but these are really only able to be replicated w/External shunts (w/external drains I've always been great at -5) or Spinal fluid leaks. Neither of those are long term options.
Most people feel good around +10 ICP or higher). My need for negative -'s says alot about need for early Hydrocephalus diagnosis.
Dr.Bragg and Dr.Mount seem to think this would/could help per Dr.Bragg so.
🤷♀️ 
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❤ stuff... Uncertainty. Re the Heart stuff, have been dealing w/fluid retention and small weight changes (after quite a bit of unintentional weight loss over the past few months) + breathing is just harder intermittently lately.
My PCP had asked that I come in and see her which I finally did before infusion today (Tues).
She is talking to my Cardiology Team I guess re this all and increased the lasix again..
Dull would be to normal I guess
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