Saw Dr.Bragg today which went well, she made the comment that the VP Shunt seemed to initially flow a bit easier than last time which is good. She has always (as do I) believed there is an intermittent occlusion affect that goes on ie the CSF (fluid that circulates in the brain and spine) builds up and once to a certain level which in my case is not very high (the settings the valves open and drain at) then the 2 shunts drain and I get temporary relief.
In the process of the shunts draining and getting relief though it is more than likely my ventricles collapse and so in order for the shunts to drain again the next time the pressure has to build up again in a repeat process causing intermittent headaches and thus the secondary symptoms. This overtime leads to the partial intermittent obstructions and then eventually partial or complete obstruction with still intermittent relief.
Thankfully today she was able/willing to see me outside her normal clinic day as an add on to her schedule (she is amazing) and when I last saw her, last week she made it so I could see her Weds (today) in order she could tap the VP Shunt and try to take off a little CSF (fluid that surrounds the brain) to give a little temporary relief for atleast a small bit of the time I am in Boston.
The tap again took quite a period of time lasting I would guesstimate 15-20mins which when the shunts are working optimally a shunt tap typically can be done in 5 or so minutes if I am remembering other ones right. I am glad and thankful she is willing to take that time out of her schedule to do these taps so we can avoid surgery AND bc she is trying to help give me relief for when I travel.
I don't know a lot of drs. and especially Surgeons who would do little things like that just to try and help their pt. have a better trip! Like I said she is amazing =)
If someone had asked me 4 yrs ago if I thought I'd be in this place with her as my Peds Neurosurgeon AND she still be so open, honest, kind and willing to help/listen I don't know if I would have been confident it would be like it is and I can't say that I would've been confident she wouldn't have given up!
Above all and always so endearing to me is just that she truly believes me and back when I first saw her that 1st time, when she told me that her Partners opinion wasn't going to weight in to her care of me (and it hasn't) she has always stuck to her word. There have been times she's gotten his advice re my surgeries or he's helped her with my surgeries but she genuinely makes an effort to be the one to be there.
Today we where talking about something and she brought up (in general) as an example my experience w/those past Providers I've seen who haven't believed me and she commented something like why would you as a patient want to make something up and instead she to knew/knows it's usually that the Provider not believing the patient is often the Provider is uneducated on whatever issue that Patient is presenting with.
In my case it was most often the Hydrocephalus, the fact I "looked normal/good" and that my ventricles weren't enlarged meant to some Providers I couldn't possibly be having issues and/or they didn't feel I had needed a shunt in the 1st place even though the drs who 1st treated me felt a shunt WAS needed.
Dr.Bragg has seen the times that have been very bad and she's seen the times that have been reallllyyyy good. She met me when I was having shunt issues BUT I'd be willing to venture that 1st time I saw her in clinic I likely didn't look that bad/to sick and she had no absolute reason she had to believe me. I am glad she did and has stuck with me though!
I think I was a bit skeptical back when I 1st started seeing her and admittedly there have been times over the yrs I've doubted but I also was so very grateful and I am still grateful!
I feel like in a way I have a dream team of Providers (and often get comments from other MPS Families on how persistent and caring providers of mine are/seem) but most especially I get comments about Dr.Bragg ALOT and how they wish they had someone
like her for their kids care. It took a lot of effort, a lot of frustration and a lot of 'starting over' ie firing one dr or just plain never going back and searching out new Specialist in whatever area it was BUT I can now say I have a Team I genuinely don't mind working with! Ideally all patients especially patients with complex issues would have this.
Non-the-less so the shunt tap is done, i'll see her again next week to do another (to take off more fluid) and need to ask her more about these leg symptoms ie is there something that I could try that might lessen the symptoms. The shunt taps work AMAZING but these are only temporary and so if we're going to keep doing this vs a revision (which I don't mind) is there something we/I could do to help lessen the other (TPL Shunt) irritating the spine nerves? I admittedly do wonder is that continual nerve irritation causing any damage? Not sure but hopefully we'll be able to figure the shunts out at some pt in order to lessen that secondary VERY annoying symptom!
I leave for Boston tomorrow, a little nervous about feeling good but also excited and happy to get to see so many different friends; it seems hard to believe it was 2 yrs ago today the Boston Marathon bombings (the ones that where just in the news re the 1 brother was convicted on 30-some counts)occurred.
Take care, thanks for stopping by,
Erica
Article for Running for Rare Diseases re 2015 Team/Season:
http://running4rare.org/2015/04/13/year-of-change-3rd-yr-patient-partner-mps-i/
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