Sunday, December 4, 2016

Lumbar Shunt Catheter out of place; A revision (surgery) scheduled. Heart Procedure as well.

                                 - See below (the pics) for update -
The LP (Low back) Shunt catheter out of place/wound up and  a mess - see 2nd pic for what it should look like.
                                        Xray done right after the last surgery, shunt replaced.

    Neurosurgery Appt - F/up
I followed up with my Neurosurgeon a few days ago; I had emailed him last wk to ask if we could do a Xray of the LP Shunt mainly; I just wanted to make sure it was ok as I've suspected/wondered since I was released from UW a little over a month ago if there wasn't a problem somewhere along the shunt catheter.
I mentioned this in the email and to Dr.Iskandar at the Appt yesterday that  i'd wondered if maybe where we had the valve this time was intermittently affecting the shunt? He in turn said he did not think so but was pretty sure he did know where/what the problem was and pulled up the Xray images on the exam room computer screen. Needless the above is not normal as the catheter has backed out of it's normal placement / is  wound up (see 3rd pic where the catheter is a little wiggly but clearly in place vs the 1st pic where the catheter is looped multiple times and out of place.)

    Surgery schedule
He left it up to me when to do the shunt revision but we'll have to go back in and re-position this catheter just a matter of when. Given I have the Heart Ablation procedure in 2wks and headaches are pretty well under control (thanks to the spinal fluid leak in my low back) i've opted to wait until after the Holidays (or after Christmas anyways, the surgery is scheduled for Dec 30th). He feels the fluid (CSF) leak is being caused by the out of place catheter and there having been such a wider area that was opened in my spine in this last surgery.
I guess if nothing else in all this that extra, intermittent CSF drainage has been pretty good for headaches and helped appetite some!
 The leak and catheter issue likely occurred due to the bone removal (laminectomy) that was done and is likely  a big reason behind the catheter being worked it's way out of place (due to a much larger area is created/opened up in the spine) in the same location the shunt cathether then gets tunneled in and sits (in the above Xray if you look closely you can see the catheter originally was tunneled a fair ways up my spine within the Cerebral Spinal Fluid, likely originally sitting in the upper lumbar space or thoracic (mid-spine) space   but I think Dr.Iskandar said he didn't anchor it or maybe it was a single suture used to anchor the catheter in place I can't remember for sure but whatever he did I don't think is unusual. For whatever reason in MPS Pts we tend to have issues with devices moving and coming out of place so that + the larger opening in the bone = the catheter was able to back it's way out of the proper location and is now a curled up mess of sorts (a catheter shouldn't  have loops much less so many loops to it when within the spine apparently).

 -  Surgery date - Dec 30th
He asked and I was ok with waiting to do this LP Shunt revision till Jan (or as it turns out the surgery will indeed occur after Christmas but the day before New Years Eve. (Surgery is scheduled for Dec 30th) By doing this  Dr.Iskandar will be in town for awhile after the surgery is done in case any issues where to occur (which they better not, lol!) but was his preference

I asked if we could move the reservoir and valve which is programmable (simply means there are multiple settings on the shunt valve (a Codman Hakim valve) and these can be adjusted to allow for more or less CSF drainage. In my case we turn both valves down to the very lowest setting ='ing max amount of CSF (spinal fluid) can be drained.
It would unfortunately have been an easier surgery had I opted to keep the valve/reservoir sitting where it is now, sitting on my back within the shunt line but honestly it is SOOOOO much easier to access (again think of like a Port device, which many of us have for our IV Infusions) when the reservoir and valve sit within the shunt but on my side. vs where it is now on my low back.

I know this means they have to change positioning on the table and re-drape but having thought about it more on my drive back from the Appt., I just feel like if we're already having to do this surgery due to the catheter being out of place I want to maximize the best potential for things to go well/not be anything that could cause irritation! - As far as if or should anything worsen between now and the end of the month i'll just let Dr.Iskandar and his Team know as instructed and we'd make decisions from there. God willing nothing will though!

Heart Ablation Procedure - Dec 14th
Otherwise I have the Cardiac (Heart) Procedure already scheduled for Mid-Dec. (Dec 14th), this is just a 1 night stay though and same Anesthesia dr. i've had for all 3 Open Heart surgeries and the other 3 or 4 Heart procedures I've had. Same Heart Rhythm dr doing the procedure (Dr.Kovach so it should go smooth.

The biggest thing is really b/c it's the sinus node we're trying to slow down Dr.Kovach said this area of the heart is pretty notoriously hard to ablate or for an ablation to last long term. It's quite possible we could have a successful procedure (as we did the last time this was done, back in summer, where it lasted for about 12 hrs) but then have to repeat the procedure intermittently down the road.
My Heart Team's concern though is the mitral valve changes and is the overly fast heart rate causing these changes so we need to do something as meds aren't working (to slow rate) despite being on multiple different medication classes.  Any risks are over shadowed by increased damage to the new valve so we do what we have to.

Thankfully it is the same Anesthesia (for airway) dr. which helps. Both I and my Heart Rhythm dr. asked her if she'd be willing to do the procedure and so scheduling was coordinated with what worked for her as well. Be grateful for the small things, right?

Pre-op Appt (for shunt surgery)
Pre-Op for the Shunt revision is scheduled next Weds with my Primary Dr., in Madison. She's great about working with Cardiology where needed or with Neurosurgery if needed so should go fairly smooth.
 Blood thinner wise unless she/Cardiology suggest otherwise i'll follow the plan put together between Dr.Iskandar (Neurosurgery) and my Cardiology Team for pre-surgery and the Lovenox.
I've been on lovenox twice daily (vs oral Coumadin) since the 3rd  heart surgery last Jan., so atleast if nothing else INR isn't an issue i'll have to figure out. At some point per my Cardiologist we'll go back on the Coumadin but for now Lovenox works while we con't  to settle out the on-going shunt stuff and this upcoming heart procedure.

As a side note I have to say even though it's pretty painful with virtually any activity (being on my feet, going to the store, teaching SS, sitting I move positions constantly, etc) atleast my headaches are fairly good yet thanks to the spinal fluid (CSF) leak in my low back! This leak occurring most likely b/c of the catheter being out of place.

Anyways will update when there's something to update,
Thanks for stopping by,


PS: As a side note the brain fuzzy/memory/having a hard time figuring things out that I know well was in fact related to a shunt setting (drainage) issue last yr from a blog post I'd written that came up on my facebook 'memories'. In it I talked about the very same symptoms I have been experiencing intermittently and which where so much worse initially after the last 4 surgeries. I have to think it is a combination of at 2st the brain flush/procedure done to clear the blood clot (hemorrhage I guess)  in my brain and from the LP Shunt doing it's own thing the past few weeks/month or so while it would seem to have been working it's way out of place. Odd but hey atleast same symptoms this time where same as last yr with trying to find things/places, memory and other little things. Hard to explain but those around me even semi often would know what I was experiencing as many saw it, especially in the 1st couple wks post the last of the 4 surgeries


Saturday, November 12, 2016

Sinus Node Ablation rescheduled. Shunt stuff is.. well it's?

Heart Procedure (Sinus Node Ablation) rescheduled:
We have scheduled the Sinus Node Ablation, to re-try this procedure for Dec., which was my choice and request to wait till then. My Heart Team was happy schedule it out though to give healing time from this recent long in-patient stay and 3 surgeries. 4 in a 4.5wk period (I'd had surgery the wk before being re-admitted, for a small shunt revision).
It's not unusual for the Sinus Node (hearts natural pacemaker) and Sinus Node Ablation to have to be repeated more than once per my Heart Rhythm dr. and from what I'd read previously (I had kind of forgotten that but we did do this procedure in the Cath Lab at Children's a few months ago which worked for a very short while).  Given the strain this overly fast rates are putting on my heart and especially the new Mitral valve we need to get the heart rate down, so we're repeating the procedure though I can't remember if Dr.Kovach said he'd plan to try a perhaps different approach.
The older mechanical aortic valve is holding up better and looked ok (mild stenosis I believe), which is good atleast given that  valve has already been replaced shortly after it was put in the 1st time 3yrs ago).

If you wonder 'why doesn't her team try meds' and have forgotten or missed previous posts re this topic? We have, oh we have and in fact I currently take a multitude of heart meds including a relatively new (approved in the past yr) 'Happy Channel Blocker' (Ivabradine), Digoxin, and Ace Inhibitor (Lisinopril), and 2 meds to get fluid off which like the Ivabradine I take twice a day. Otherwise the blood thinner and Baby Aspirin.

This re-do ablation is is scheduled for Dec. 14th with  the same Cardiac Anesthesia (airway) dr. I've had for all prior heart surgeries and procedures in the past 3yrs.

Shunt - Neurosurgery Stuff
I requested and received copies from the recent Shunt infection/3 wk stay and then the notes from the shunt surgery done the wk prior to this long admission as well. It may sound weird but it's always a little interesting to read these notes and especially from these surgeries as I remember so very little from what was done in the surgeries. It's weird every so often odd little memories or people I met come back to me from that stay as if my mind if slooowwllly filling things in.

So what I learned really is the External drains must have clotted off 2 different times requiring 2 different replacements I guess and then a brain blood clot was found in the actual surgery when the drains where removed and the shunts put back in. Between clearing that clot in the ventricle and the issues found again in my lumbar spine (Arachnoiditis aka significant scarring. I've known we had this scarring issue for many issues and had several surgeries for it but was never entirely clear if it really was Arachnoiditis) which required a lot of scar tissue removal and a laminectomy which is really just a fancy word for spine bone removal. This was/is done to create space for the LP shunt to be put back in. This last surgery was apparently pretty tedious at 7+ hours.

Overall in the 3 or 4 wks I've been out of the hospital now the LP Shunt area is still INCREDIBLY uncomfortable and virtually any movement makes the area swell and painful/uncomfortable which really seems very much to affect that shunt functioning properly.
Brain fuzziness with thinking (hard to explain) and memory are still really off. I keep mis-placing things only to find them in spots I'd normally never put that particular item. Or driving I routinely have to use GPS on my phone even though it's places i've been in some case literally for yrs. It's unnerving and silly and frustrating and the funny (not really funny) thing is it's not all the time but often enough. I firmly believe it has to do with the LP Shunt and the swelling that's occurring and that seeming to affect the shunt functioning consistently.

The extra drainage from a CSF leak in my lumbar spine has been good though slowly seems to be going away which isn't as good bc then morning are back to being more difficult (just takes more to get going and longer to feel better). I think a lot of that CSF leak has to do with how much I do so bad on one hand b/c it makes worse the irritation and swelling and secondary symptoms but then the subsequent CSF leaking helps headaches. Irony!

Perhaps most of all and I may have written about this in the last update is I think the swelling in my lumbar (low back) area where the LP Shunt sits is caused by that shunts valve (which controls how much CSF can drain) being affected and does it intermittently stop draining as swelling and irritation builds up?  I asked the Neurosurgery Nurse this question, (could the swelling/fluid leak affect the shunt function) and she said she thought so. I definitely think it does. I HATE the valve sitting where it does and would love it to be back where it was on my side! Either place the valve sits it is still all connected, before the valve just was funneled under my skin, connected to the shunt catheters but on my side so out of irritations way when I move/function.  Out of the 2 shunts the LP Shunt we rarely had issues with the way it formerly sat.

Apparently with the last of the 3 surgeries this last time, because of the excess or irritating nature of having to clean out the blood clot my Team kept me sedated and intubated for a period of time after to prevent seizures though from what my Dad told me if I remember right I must have not had my hands tied down nor been sedated or not enough as I must have ripped out the breathing tube. I remember none of this and only remember being back on the regular Neurosurg. floor but heaven only knows if that memory is actually right either? I think it is but who knows!

Overall I just HOPE this settles, my Neurosurgeon can help me and will keep listening... He did agree to do imaging to make sure the shunts aren't in funky sitting locations or disconnected or something. I'll also see him in 1.5wks, I've really not wanted to go back in but I cant do this, this just isn't normal and I don't foresee time making the LP Shunt area better due to that shunt valves location/irritating nature.
Will update sometime soon,
Thanks for stopping by,


PS I hope everyone reading this voted. Seems a HUGE part of our Country didn't. = /