She re-programmed the VP Shunt down to 40, which is also what the TPL Shunt is set at, I haven't noticed a big change from this but I do think it may have helped a little. As is almost always the case mornings are the worst and have been a little hard. I can always tell when I feel particularly bad as I actually get some (restless) sleep albeit I wake up very often (sometimes like last night according to the Nurse every 15-20mins, which I then have this weird habit of while apparently still sleeping (I never remember doing this but do it quite often in a night) sit up and on the side of the bed. From that I must rock back and forth as the Nurses are constantly walking past and waking me up fully to get me to lay back down (I sleep on my side semi-upright.) Out of all of these waking up/sitting on the side of the bed and being awoken by the Nurses I only first fell out of bed (fwd, landed on my knees) early this morning. Needless to say days like today I ended up falling back asleep after being up and to the bathroom, brushing my teeth and restlessly sleeping for another hour or so including when the Neurosurgeon and Resident (separately) came by on each of their rounds.
After surgery last week when Dr.Bragg stopped by she did comment that when she tested both shunts in surgery they both appeared to be flowing which she was somewhat surprised by as she said to me "I would have honestly thought one of the shunts was not working and I would have guessed the Thoracic Shunt", but non-the-less they looked "ok". =) We both said it figures we would have had to mess w the VP shunt given it was working!
Hopefully now we can figure out whatever is going on ie is it just "brain irritation" from Neurosurgery having had to do so much in this surgery or is there different pressure dynamics w the 1 shunt now draining back to the pleural space?
We've never had both shunts have this Codman Hakim programmable valves (the best we've had as far as how well a valve or valves have worked for my symptoms) and both drain to the separate locations so hopefully this will smooth out! I am glad atleast the shunts are draining separately; so nice for stomach spasms sake!
When the shunts where both draining separately last Spring I had gotten the Codman Hakim (I think) in March and we didn't place the 2nd Codman (TPL Shunt) till this last June (leading up to the heart surgeries) so we didn't know as is the case now would symptoms change?
Although both Shunts worked pretty well together I did have some symptoms (and the stomach spasms) after we placed the 2nd (same) valve on the Thoracic Shunt last summer and we where messing w the draining location, so this changes last week is basically trying to sort which of the many things caused these current symptoms? We will figure it out.
I am not sure if it's the Lovenox and suddenly stopping the Coumadin last week or what but I am shedding hair the past 2 days and especially after the lovenox shots like it's a new business. I literally can run my fingers through my hair and pull out 15-20 strands from one small section (and yes I know that is ridiculous to even estimate how much you lost!).
It is a few days later as I am adding more to this post (before it saving for all to see) and though I hate to jinx myself I asked to not do the Lovenox injection this morning and I haven't dealt w very much shedding hair yet! I hope it is done!?!? I highly doubt it's coincidence my having been on the Lovenox and given this worsened shedding only started after I started the (lovenox) injections but you never know. I am just hoping the worst is over! Whatever the case I hope the loose hair stops for good! =/ I have more than enough hair right now you cant tell I've shed like crazy but even w a lot of hair you still only have so much to lose over time! (I know that's incredibly vain but I feel like hair is one thing I can have a little control over despite everything else and I don't need any extra help w my hair being crazy!..
The thin hair seems to happen for far to many people from reading about Coumadin and this issue online but yet few seem to know the likely connection and few seem to be aware sometimes taking replacement minerals like the B-complex (biotin for instance and then Zinc/copper, fish oil) can help.
I know the Cardiology NP last summer/fall after the OHS commented that they recommend to pts to start a Multi-Vit as Coumadin messes w the body a lot. I hadn't started anything till recently, I guess mostly bc I wasn't sure what impact she meant. From reading online/asking around to friends those who do experience it many seem unaware that this hair issues is something that the Coumadin can cause due to how it messes w the bodies mineral/vitamin balance. many seem interested in this and want to start something but often don't know where to start. Others who've been around the block w this issue frequently recommend 2 supplements.
According to a friend she much the same as the NP commented that Coumadin messes with the bodies balance; =/ Rat poison will do that I guess! This same friend (whose son has MPS III) gave me some specific recommendations to look for that wouldn't be so hard on my body (upset stomach wise especially) and she felt would help balance out what Coumadin un-balances in the body.
The reason Dr.Bragg has been doing the Lovenox she told me Sat morning vs re-starting the Coumadin is she doesn't want to have to wait for INR to drop if she where to decide to go back in to surgery. I don't think she will but she mentioned she'd probably tap both shunts before releasing me and she worried doing either (anything invasive) to soon would stir up any possible infection that was waiting around in the CSF.
She has been doing twice daily IV antibiotics since surgery too. She wasn't here this morning (her and her partner switch Sunday's they round and on days like today her partner sees her pts.) so I didn't get to see what her thinking is but hopefully tomorrow we can figure something out!
I know it is semi-ridiculous to worry and talking to my parents the other day about my feelings (regarding would Dr.Bragg ever just get tired of trying to find answers or the best optio, a topic I've written about here before) they wisely felt like if Dr.Bragg has been through this much with me already why would she stop now? Like I said isn't always make sense but I still sometimes worry a bit about her giving up as she seems to have a down to earth-look at it practically view of my shunts and overall issues. When you have something like MPS I think it is fairly normal to worry a little about the good drs who invest time in your care suddenly leaving or giving up!
I should probably worry less about this type of thing and more about what I can influence (I don't worry about a lot of things including very much about the actual surgeries I go through but I do mull over things that really aren't worth worrying over!
Anyways, I think this is about all I know for what's going on since surgery; i'll update again when I know something more!
Thanks for stopping by,
No comments:
Post a Comment