Dr.Bragg came in this morning and we decided on either this afternoon or tomorrow for discharge. Well since it is tonight I am still here - I felt incredibly sick this afternoon around noon and after zofran fell asleep till about 5 after which I woke up with the headache still and very blurry vision but that dissipated after being up a while. I do think the headaches might decrease quicker with this new valve when I get up form laying down - a few moe days will show yes or no but this would be awesome as mornings and naps are definitely the hardest for the headaches and symptoms occuring! A good sign is the reservoir built-in to my 1st valve at top end of shunt (proximal end) now automatically refills and isnt collapsing thanks to the 2nd paedigav valve in my upper stomach area of shunt. This should help prevent the cyclical headaches and pressure spikes as body acclimates to new valve as my body gets used to new, better pressure and the nerve signals calm down from being so compressed for so long. My Neurosurgeon just said she thinks we havent had the right pressure setting in months and so the up and down increase/decrease in H/A's will keep improving as the nerves in brain calm down. I might still have some (lesser) H/A's at the moment but glad for good signs pointing fwd and will take this - I can take that it might take a few weeks to see if all symptoms will go away, atleast we are working towards something vs not knowing when it might or even if it will improve! She also said she thinks the blurry vision will improve as the nerve signals calm down and pressure evens out. This goes along with the fuzzy/numb feeling in my legs/feet and muscles spasms in my calves and feet as she feels those to are from the shunt not working for so long and pressure building up in the spine and already having had irritated nerves from previous lumbar spine surgeries throughout these revisions and from the LP shunt problems. I am hopeful all these things will even out and completely believe in my neurosurgeon - I truly like how committed she is to my care and to wanting to help me. I feel like im getting more to the point especially with this admission that I can talk to her more easily - not that she ever personally made me feel like I couldnt ask her things but I just have a hard time bringing up concerns to people/asking for help and I just never wanted to inundate her with my concerns/or questions. I think the talk her and I had yesterday was the best thing that could have been and I am incredibly thankful that she is intuitive and could figure out something was the matter on my end emotion wise and I had things on my mind regarding overall neurologic issues.
Dr.Bragg explained to me yesterday how different causes of hydro (congenital, trauma, or hydro such as from MPS) present different and react differently to shunts and thus require neurosurgeons to treat them differently - to think outside the box. She explained how often neurosurgeon treat all hydro cases regardless of the underlying cause the same and this can cause problems with how a person adapts to a shunt/how a shunt works. Anyways I liked the way she explained it and was something I hadnt really thought of before other than how hydro presents a bit diferently in MPS than in 'plain' hydro cases. So I think I am going to ask Dr.Bragg if she might be able to write down her explanation of different shunt issues in different hydro ptients and differing support needs whenever she has a moment so I could share that with my other providers as I really think it could help them understand why it hasnt been just that simple to get the right shunt fix and why we have gotten good results but then the shunts will occlude or headaches re-occur. I will share it here if she is able to write this information down.
I emailed my neurologist last night about Dr.Bragg being willing to manage my shunt and overall neurologic care (spine, autonomic, etc) and that Dr.Bragg had said if she had any questions she can contact the neurologist she works with on complex shunt patients. So Dr. Peltier said she was fine with this and would just like to be kept in the loop and I should keep her in the loop if we/Dr.Bragg ever had questions regarding past neurologic history or in general. Dr.Peltier said she felt there wasnt anything she could do that wouldnt require her consulting surgical input anyways so I think Dr.Bragg managing all issues may work well since we get along very well I think. I think Dr.Bragg has gotten an incredible idea of what my life is like overall with MPS even just a small idea and this has really helped my overall care and our overall working together to. In some ways it feels like she understands how MPS complicates almost everything more than some providers ive had for years understand the overall situation! I see my cardiologist in a few weeks and am going to have him send his reports as well as other pertinent drs send then reports to Dr.Bragg as I think she of anyone cares to get them and be involved. Sometimes I feel like when it comes to providers I should pinch myself, how did I get lucky enough to find providers like her and a couple others I have?????
More soon - hopefully getting out for real tomorrow - my sister, mom and nephew are coming to pick me up and go out for supper on the way home! So excited!!