Dr.Iskandar (Neurosurgeon) when he came by Fri asked why I was sleeping in the recliner and do I always do that (kind of goes to show how little what we say as Patients gets through to some drs, I don't think he does it on purpose but I've told him several times I sleep in my recliner at home b/c of the headaches and shunts drain better when not laying down). Anyways it seemed to really occur to him that it might be an issue for me (imagine that, I not be lying or something?) I doubt still it will change anything though, he just doesn't get it.
Symptoms since surgery have been really frustratingly not great. The headaches (pressure) is still there, vision issues with certain things still there - that improves as the day goes on though doesn't seem to entirely go away - I am hoping with a few more days maybe this will be better. It seems today as bad as this morning was (it's bad when I have to take triple dose of pain med for actual pain (wish it touched the headaches/pressure!) - I am hoping my Physical Therapist can work some of his magic on my shoulder/back stuff (surgery related, I'm not sure it's actually from the shunt but don't really know yet).
As the shunt seems to drain it helps the headache as is good but then I get this very intermittent, very sudden wave of lightheaded feeling - super odd and hopefully goes away to! It literally makes me feel like I am sitting on shifty sand vs on a solid surface (lol, not sure if that makes sense) and then my head just feels buzzy/off for a bit till it settles again after awhile, as if the pressure drains and then adjusts. VERY, very weird!
It stinks though how with certain shunt placements you feel fantastic from day 1, particularly when brand new systems are placed (not that I want a whole big surgery its just that its a common sentiment I hear especially in us MPS Pts. we often feel so much better with new shunt systems then we do when parts of shunt are replaced). Just another odd thing some of us have I guess.
Low-to-mid back pain is pretty intense though moving the catheter atleast so far has seemed to help the pain related to that down my R side some. I truly think and probably am always going to think that the bigger issue is with the valve and reservoir placement on my back and frankly will probably always be mad at myself for backing down about this last Jan (I think that's when it was). I don't blame anyone else but I should not have let myself be talked in to this. I knew and know my body but sometimes you just feel so frustrated and worn down and that is what I felt that morning in pre-op after Dr.Iskandar and I had already agreed to move these back.
I really don't care what anyone says I know my body and for that matter there must be a reason none of the Neurosurgeons before him placed these devices like this. Frustrating to go from someone you felt like listened to someone that thinks they are listening but they really aren't.
As far as surgery they did Neuro monitoring during (someone from that Team had stopped by in pre-op Tues morning to introduce themselves and say what they would be doing). B/c of TIA (mini stroke) a few weeks ago and a heart med I take for heart muscle function (Lisinopril) they also placed a Arterial line (An A-line gives more direct, better measurements of pressures between heart and body I guess) which I really don't remember. Biggest thing is everything seems to have went smooth during surgery. And even if I don't feel great yet I am glad for that (it having went smooth)! I know there was a fair amount of concern in pre-op that morning between the Anesthesia doc and my Neurosurgeon although I did not feel the same concern they did.
Surgery wise Dr.Iskandar said he didn't have to do as much as he thought he might as the LP Shunt was draining and contrary to what he had thought the catheter actually was already started in (led in) to my Lumbar Spine (low back) so he just had to pull it down some from thoracic spine. He wasn't or wouldn't have been able to do anything with low back scarring otherwise which is a bummer (that it's gotten this bad) but I am glad atleast the catheter could be adjusted. He had thought the catheter started in my thoracic spine though that to because of the incisions and work he did last Fall I was almost certain it started in lumbar (low back) area and just tunneled up to thoracic spine.
Headaches have sucked actually since surgery, they where bad enough before the surgery but now are just plain crappy. I JUST WANT TO FEEL NORMAL!!!! And to not wake up everyday and it take hours and hours to feel more normal. Like I said above today seems to be 1 of the best days so far so hopefully maybe will get better. I am sure hoping!
I when talking to Dr.Iskandar on the day of discharge once again explained why I need his help and no I don't actually want to be there repeatedly asking him to believe me and that I get it I look normal to him but he sees me for 5-10mins every so often while I have to live in my body every single day and try to function. I told him how I really didn't think it was the LP Shunt that was the cause of my headaches to begin with but was glad he atleast tried adjusting the positioning, see if that would help the leg stuff.
For whatever reason this morning and I can't really explain it but sincerely hope it's just a passing thing but my L arm is sort of numb (not like numb in I can't use it but just a painful numb) - seems to go along with as the shunt is draining. It is so freaking frustrating that these shunts can't just be good and not painful and I can't just feel good. =/ - Thankfully finishing this up later on that has passed, whether it was the extra pain meds or who knows what I'm not sure but hopefully stays gone!
I realize I sound pesimistic or something but I hope Dr.Iskandar really takes to mind what he and I talked about and does have the conference call he talked about with Dr.Bragg and Dr.Guillaume to try and come up with an alternative idea for treatment/management. Do I think something will change or he'd actually do something with either A. the LP Shunt valve reservoir location (these sit on my very low back, whereas they used to sit on my side connected to the LP Shunt) or the VPL Shunt without another long drawn out fight? Probably not. He just doesn't get it and doesn't get that for someone like my case, some of us with MPS we present very differently and he doesn't see it b/c again he sees me for like 5-10mins at a time. I wish it didn't have to be this frustrating though! No one should have to fight to feel better and to be believed.
Will try to update soon. Please, please say a prayer things improve each day and I can start to feel like a more human and my Neurosurgeon really consider that I'm not just making this crap up!
Thank you,
Erica
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