Surgery (revision) #10, VP revision # 2

Surgery went well yesterday see below for more info but affter testing Dr.Bragg didnt need to revise the portion of my shunt in my head again so she just ended up disconnecting and placing the second valve in my upper stomach area. Total surgery time was apparently 1 1/2 hrs from anesthesia to Dr.Bragg finishing with Dr.Bragg's portion taking only about 25mins. I didnt sleep very well last night either and got about 3-4 broken up hours of sleep.

Dr.Bragg when she comes by especially after surgeries always has funny sayings she comes up with to compare what she has done to something in real life in order to make it more understandable and in my case she wanted to make me laugh and said when she was trying to get the valve in to the tissue all she could think of was how my skin and tissue is just like rubber.  She said the 2nd valve placement (a paedigav valve) should have taken 5 mins but took 25 mins to place  due to shunt tubing being adhesed in to tissue already and catheter moving around quite a bit when it should have stayed in it's placement. She said it's very unusual for scarring and buildup to occur in such a short amount of time as my scarring did (about a month 1/2). I mentioned how with IV's my skin is the same way and especially at ERT infusion the nurses always commented how tough my skin was and this is really common in most MPS pts. Interestingly she said the skin in my head is no where near this tough to navigate catheter placement through. Apparently catheter in the chest and stomach should slide right in like a necklace against skin and much like kids linking blocks should be easy to connect pieces together.

I have been so tired the past 2-3 days due to so little sleep and having an incredibly hard time falling and staying asleep that I have been emotional today and was in tears of frustration with symptoms (low back, muscle spasms, vision and just wishing it and the headaches would go away). She first said how again she wasnt going to abandon me and I shouldnt worry about telling her things - she wants to help and the worst she can say is "zi dont know" but that she will always try to find answers for me be it the headaches or other things going on and will be honest with me and wasnt going to leave me care. She just mentioned how it helps her for me to tell her whats going on so she can get a small snippet of what my life is like and helps her in making decisions for us/my care  I asid to her how I appreciate this and just need to learn that she is different and isnt going to suddenly change and say "I dont know what to do with you anymore" or something like that. I also said how even though I have a hard time telling her when different things are occuring health wise and asking for her help she is so different from many providers ive had and I didnt know if she realized it but she really is a good dr and good at listening to/helping her patients. She said the low back pain and muscle spasms could be from when shunt isnt working and pressure building up. She is going to try a muscle relaxer as needed to help and thinks it may improve although may make me tired so we'll just try it today while im here and see if it does anything for the spasms.   They are looking at relistor to see if it would help with GI affects (constipation) of pain medication per GI drs thoughts. Did Xrays this morning on shunt which is generally her standard protocol after surgeries to make sure it's all together and right.  She also talked about how when she came up to the floor to find my parents she was talking to the nurses explaining to them why my shunt and situation is so different from alot of her patients and explaining why we've had to do so many revisions. She said the nurses told her how much they like me (so sweet of them) and she said it was good for her to be able to explain to them why my case is a little different and how MPS factors in + complicates the situation and her and I have to find the right fit. Why cant all healthcare providers be this down to earth and caring? Granted I have some very good providers but non quite like Dr.Bragg - I think the biggest thing I told her is with some of my providers I do feel like I am banging my head against a wall trying to explain this shunt stuff and surgeries and she said that she really tries to think outside the box and no 2 patients of hers are alike + she thinks with hydro and shunts thats why some providers have such a hard time getting when there are may issues.

Below is a entry from yesterday -


10:42am - Nov 2nd.
No certain time for surgery due to it being an 'e-case' but neurosurgeon stopped by and she is planning to re-explore shunt and will place the second valve (usually in upper chest but due to my thin frame she plans to place it in my stomach area of the shunt) which the idea is this will slow down/provide added resistance to the CSF which the 1st valve isnt keeping up with and thus prevent ventricles from collapsing and occlusion. Thinks it wont be a long surgery.

Be thankful for those around you who want to help, take time to listen and care! Be it family, friends or providers even!

Erica