Kind of going to do this backward, post-surgery update 1st and somethings Dr.Bragg and I talked about this a.m then the surgery update. Weird I know but it's what I do best (weird, out of normal). =)
Dr.Bragg stopped by this morning, we where talking about the surgery, how the valve she used seemed to have given us a little more drainage but still isn't enough. I mistakenly when her and I have talked about the valve she ended up using thought it was a .5 valve so just a smidge of a difference from what we used in May but that 'smidge' difference might be enough to give us a bit of flow resistance so as not to irritate the spine nerves so much but would still allow drainage close to negative #'s.
Instead what the valve was is a '5' setting meaning more drainage then the Codman 30 shunt valve I had for the past few mo (and had in both previous shunts when I had 2 in place draining.
The 30 setting equaled something like a pressure of 10 per Dr.Bragg so no real significant surprise that wasn't enough drainage on it's own. Given we know I feel best at -5 when the EVDs are in place even this '5' fixed pressure valve I guess not a huge surprise it doesn't allow enough CSF to drain out..
She was going to talk to one of her Shunt people and see if they by chance knew of any valves that allowed more drainage than this current '5' valve but a bit more resistance/less drainage irritation then when I had the '0' pressure valve a few mo. ago..
Some other options Dr.Bragg mentioned possibly today that she either would like to try if she could figure out a way or that we're considering include:
2. Recreating somehow a CSF fluid pocked like the pseudomeningocele (an area where CSF leaked and built up under the skin and would absorb, build back up, absorb acting in a way like a shunt but under the skin). I had really good results with that and acts similarly to how how an External Drain (EVD) works. She has mentioned this before but not sure there is a way to do that..
3. and what I happen to think would work best, Dr.Bragg was a bit more hesistant but didn't say
no altogether.
Put a 2nd shunt back in VP (brain) with perhaps a programmable valve and keep the fixed pressure valve that is in my LP Shunt. We know my LP Shunt drains so well/so continuous but we can't quite get it to be just enough pressure drained without the extreme spine-nerve irritation.. This way (and what I really think would be our best bet), I'd have CSF draining from 2 different locations, the VP Shunt even if it didn't work continuously could potentially give us just that small extra amount of fluid drainage we need to get to a really good place (how I feel) wise and shouldn't cause irriation to spine nerves.
With this Dr.Bragg wanted to think some on this and probably she said she'd want to make sure the new heart med wasn't going to affect the pressure/headaches at all before she would replace a 2nd shunt if that's what we opted for.
I feel such nausea and headaches and affecting vision some the way things are I am praying we can atleast try adding a 2nd shunt back. I really feel it would be the best option, most likely to succeed now that my other shunt is back draining in lumbar area where we know it drains so much better than the former TPL Shunt did.
I do see my EP dr late next wk so if it was Cardiology she wanted the ok from again I would be seeing them and if need be I know either my EP (Heart Rhythm) or my Cardiologist would talk to her.
Weds's Surgery -
Back in the OR yesterday as everything was getting set up before I would be put to sleep I was kind of listening to the 2 Residents behind me. The 1 Resident to the other Resident as they where hooking up monitoring equipment for surgery: talking about the heart issues:
"Oh that's all been treated, we don't have to worry about that now " - umm ok?! So not true and I mentioned to them while the aortic valve had been replaced the Mitral valve is now a bigger problem based off changes detected in Echo and other testing this summer. Yikes sometimes!
I did have the Anesthesia Dr I had today atleast once before and I think several times in past surgeries, I have always liked him but he didn't entirely seem totally up on the newer heart changes either (mitral valve low end of severe range, increased (elevated) pulmonary pressures (which I think this has to do with oxygen in the heart, I can't remember for sure ) and the Congestive Heart Failure due to the mixed mitral valve dis.
Non-the-less I knew this was very likely going to be a very short surgery (actual shunt part look roughly 30mins) so I just corrected the Residents BUT had it been a longer or bigger shunt issue you can bet I'd have made sure they knew ALL the issues/new changes!
While I rarely worry about the actual surgeries, if I did I'd be more nuts than I probably already am. That said I will be 1st to say overhearing those 2 Residents talking about the heart issues so non-chalantly definitely had my nerves up a tad! Thankfully (I guess, lol) the IV sedation was given w in 5mins of that after time out was done and everything hooked up.
We had quite a wait in pre-op due to being asked to arrive an hour early if we could as Dr.Bragg was trying to get the surgery moved up. Normally she tries to do all my surgeries 1st case/early but she had clinic this morning so anyways we got there at 12:00 and talked to Dr.Bragg pretty quickly + my initial Nurse came by to start everything.
I had my Port accessed already from Tues's Lab draw at CHW in Milw so that made the Nurses happy (lol, they where really happy, was funny).
My Primary Dr during the pre-op physical a wk or so ago had put in her notes about the very specific pre-surgery stress dose steroid timing and so the Nurses had already had that ordered up. We did have to clear up a tad bit of confusion regarding it's timing w my Anesthesia dr. but it was given an hour before I went back to the OR. So nice when it's smooth re this med and surgery timing! One if the Nurses I had today had also had me back in May/June for 1 of those surgeries and she said to me something along the lines "Well that went a lot more smooth then the last time/last surgery here!" =) I would have to agree w that Nurses sentiments!
My Mom and I where talking about the shunt issues, my headaches and she was talking about as babies how she'd notice differences between my twin and I between ways we developed and little issues I had that Aaron or non of my other siblings had. How it wasn't caught then but my headaches started back in 1st grade really badly but imaging didn't reveal anything and was eventually chalked up to migraines or sinus headaches.
How after a while, while I still got the headaches was less often till some yrs ago and Dr.Bragg's belief the headaches back then where really a form of Hydrocephalus, and this not being caught and in turn going un-treated Dr.Bragg has felt the cause of why we have so many issues w shunts now.
We where talking about I think how I so often get comments from friends and people on things like 'Well I hope they get it right this time" which I know people mean well and genuinely some people don't know how you learn to put on a 'face' so to speak when not feeling good but that in turn when you receive above comments ya almost feel guilty! Like I know I don't feel good but feel like I should b/c people think that I look good..
Dr.Bragg sent me a message the day before surgery and I must admit I thought it was so sweet of her. Essentially after mentioning a bit about the surgery plan she (probably to reassure me which I admit I appreciated) made the comments:
"It is worth trying and if it doesn't work we'll keep trying until we get it right. You are worth it and deserve to feel better". - She is kind for sure and thoughtful and she never gives up on me
even when I am struggling at times! Although I don't need 'cheerleaders' sometimes I think that is what she tries to do, to offer encouragement?
On a side note I have to admit I am taken aback but think it is really sweet how many of my friends have made comments about how I deal with Insur., the trials they have had or do have and yet I seem to deal w these things and not have as many issues or I am able to get it sorted out.
Even my Cardiologist comments from time to time how he is awed I have been able to get Dean, my primary Insurer to cover him as an in-network Provider and to cover tests there.
Apparently he has to talk directly to the Med Director for other of his pts. in order for some of them to get exceptions to see him and still others he's I guess never gotten approval for a few pts to see him. I often wish I could help other pts. with Insur. while I am under no circumstances a pro at insur. issues I have been able to learn and think Patients can be so empowered when they are better able to sort these sorts of things for themselves as much as possible.
While I am really stubborn and will keep at an issue till I get it approved or talk to the right person but I also have to give a lot of credit to my former, 1st Case Manager at Genzyme and what she taught me when she realized I was asking her a lot of questions and trying to learn. I'll always be grateful to Steph and her patience! Related to my medical care there have been a lot of "everyone needs someone like that person" in their life and I feel truly blessed to have had not 1, not just 2 but many, many people whether Friends or some Providers or people I've worked with in various settings that have helped me!
In any case, thanks for stopping by,
Erica
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