This I believe looking back through old entries was #13 Since last May and #16 overall for shunt revisions. Yikes! (although still nothing compared to some with shunt issues)/ My Neurosurgeon did tell my Dad as well as me in addition to her ideas below she has other tricks up her sleeve if needed. I am grateful as always to have her on my team.
I'll elaborate on these but these are the short updates I posted to fb earlier today:'
"Surgery took about an hour - will update a little while but was up on the floor by 10:30. Anesthesiologist today was from the cardiac anesthesia tema; very good and interesting to talk to. (Explaining how they would pre-emt any cardiac issues in surgery due to underlying issues). Will update findings, plan, etc a bit later. Tired and admittedly a lil crabby from being so tired."
~"Will update blog later but in pre-op Nrsgn explained how she was still thinking about my case over night but had decided on re-locating the tip of the ventricular catheter from the lateral (front) ventricle to the 3rd ventricle (same incision) using the endoscope as this is a stiffer area she believes is less likely to cause intermittent occlusions from intermittent collapsing. If this too doesnt ...work (re-occludes, obstructs again) she believes placing the LP shunt again in addition to the VP shunt would be our best option to allow more drainage. She would place this catheter in the lumbar spine at a different level than the previous LP shunt due to the spinal nerve root surgery last May and knowing the previous area is abnormal. The previous LP shunt was initially just tied off when the VP was placed for this very reason but bc of the CSF infection in Nov we had to remove both shunts and didnt replace it. We had frequent issues w/CSF fluid pockets and the lumbar tip came out of the sub arachnoid area at the end so we do hope not to have to place this again. If we did she said she can use a Y connector possibly to connect both shunt ends in the peritoneum to avoid a 2nd entry area there. The catheter itself she told me Dad wasnt as clogged this time (possible indicator of needing firther CSF drainage though as this is since having it on the lowest programmable setting (drains more)) but she did clean it out/move it."
Dr.Bragg this morning made the comment she was a little nervous that the shunt catheter wouldnt show any blockage (the reservoir was slow to refll and same symptom progression as other times) and although I didnt talk to her directly post-op (well maybe I did and honestly dont remember it!) but she told my Dad that the catheter wasnt as occluded with cell debris as it has been in the past but I believe she still changed that catheter and she also moved the actual tip of the catheter (by extending it's length) to the 3rd ventricle whereas before it was in the frontal (lateral I believe is the name?) ventricle and this area should provide a stiffer background for the shunt to drain and the hope is help the ventricle from collapsing and occluding as often. She said this is more likely to become affected by the Choroid Plexus in this area but that balanced against the former position she felt this may help us better. I hadnt thought alot about her comment regarding being concerned the catheter wouldnt show any occlusion till after surgery as I honestly wondered the same thing she did and post-op I wondered was it bc she then she would know with more certainty that additional CSF drainage would probably be the step needed to stop the 'left over' symptoms? (mostly vision, some issue with laying flat although was 75% improved last time) That results in the occlusions as at this lower drainage would it be helping push the cell debris through more easily regardless of the sticky-MPS storage substance (more force?) and yet not quite enough drainage to completely resolve the issue? I dont know and have written it down as 1 of 3 things to ask her.
She still feels if this occludes/symptoms dont completely resolve again that we likely need to drain more CSF and feels adding the LP shunt back as a lumbar drain (and possibly being able to connect it via the same peritoneal/abdomen incision via a 'Y' connector) to the existing VP distal catheter may be our next step if we have the same issues again despite this change. We hope to not have to do this but if this shunt fails as have the others despite our newest change in location then she thinks adding further drainage will help increase the brain compliance (more fluid drained, more space I think) which can help symptoms. I am already at the lowest setting on my VP shunt and dont know what setting a possible LP shunt would be but it is in the background as a 'next step' if we require that.
I do think far more of my drs understand the shunt issues now vs even a couple months ago (based off talking to and explaining in depth Dr.Bragg's thinking to my PCP and to my Cardiologist and their responses) and that was nice or reassuring as ive struggled a bit lately with knowing was I making the right decisions as underlying I knew I wasnt making a hasty, un-informed decision but you still sometimes quesiton yourself.
I have to say today was by far the most the underlying cardiac issues have ever been a factor in any surgery and even Dr.Bragg who was in my pre-op room when Anesthesia was talking to me about their induction and surgery plan to mitigate cardiac symptoms asked afterwards if issues with the valves had gotten worse very recently bc of how concerned the Anesthesiologist was. I just said that it has been a almost gradual but steady up-tick over the past 2 years and although more symptoms I still sit at the moderate range (severals degrees short of severe with the Aortic stenosis according to the anesthesiol) with most of the stenosis and leaking valve issues and then the L sided filling pressures are very elevated + L atrium is severely enlarged. I added that my Cardiologist gave his blessing and is changing around some of my meds post-this surgery + we are doing the cardiac perfusion stress (dye) study to make sure all of the heart is getting properly oxygenated blood and if abnormal then we have to more seriously look at moving to double valve replacements but if normal we can post-pone for awhile as other things are sorted and because of the surgery risk for that and big change it would mean with daily coumadin. Dr.Bragg sits on a ethics committee with the Anesthesiologist I had today (he was from the cardiac service vs the normal neurosurgery anesthesiol. I usually am assigned) (since it is a brain surgery typically each anesthesia doc is 'sub' specialized in an area).. I appreciated all the info he gave me which was great and appreciated as was his humor and his desire to learn about my issues +I learned alot from him. He seemed to want to do the best plan he could to preempt any surgical-cardiac issues. He laid out the complete induction and surgery plan and it was a different approach to some extent than others have used but was as I said interesting his reasoning. (which all did make very good sense). I think Dr.Bragg learned further about the cardiac issues and found it interesting as she stayed in the room and listened to the whole conversation which was about 10-15mins.
As for why we are hesitant to want to put in a second drain right away (besides it just being yet another foreign device in my body) with the previous LP shunt both w/my former neurosurgeon and with Dr.Bragg (is fairly common in LP shunts) we had many issues with pseudomeningoceles (CSF fluid filled pockets) around the lumbar drain of varying sizes and degrees and also had a problem with the reservoir becoming flipped (causing CSF fluid build up of it's own) and in the end the lumbar catheter tip had backed it's way somehow out of the sub-arachnoid (I believe that was the fluid filled space) and was not working. We also of course had the issue with requiring the laminectomy and nerve root repair (multiple levels of nerve roots compressed in to a ball she had to take apart and repair) last May + the complications this caused. That all said she said if we did do this she would not place the lumbar catheter back at the same level and would move it higher or lower to stay out of the area we know is very abnormal. That nerve root issues was also more likely bc of the MPS storage and repeated lumbar punctures both before I had teh original LP shunt put in and the lumbar punctures since until I started seeing Dr.Bragg and she placed a reservoir into the shunt set-up.
In post-op one of the Anesthesiologist ive had for 2 previous surgeries (last month and in August (he checked!) :) stopped by to say 'hi' and see how I was doing + to wish me luck with this revision. He was a fairly quite guy so I did think that was pretty nice on his part since I wasnt in the main post-op recovery holding area and instead was with a sole nurse in a separate room. (isolation)
Earlier tonight I got an email from a 'new' (to me and to ERT infusions) MPS I Adult who found me via a search engine/website and reading this blog; it is actually always kind of exciting that this blog really helps others with both MPS I and with hydro (ive gotten seveal emails from people with that who found me/this site through search engine searching). This person is in their early 40's and similar in build to me and says she also has similar joint characteristics/posture as well. Pretty neat! We plan to talk on the phone later this week when I am home. She does not have hydro secondary to the MPS it appears.
I have been getting updates from the main Genzyme Patient Marketing person ive worked mainly on the 'Adult MPS I' Survey and the deadline was extended to next monday + I was asked to comtact adults I know and remind individuals to consider filling out the informaitom (which goes directly to Genzyme to be quantified). We have gotten a fair response so far but want to get as much date and individual response as possible. :)
I was Asked to participate in a radio interview for a program called 'Winning Life through pain' in June for my role at APF regarding my experiences with chronic pain/chronic disease and the strides ive made in over-coming/getting on top of this pain. (pain management, physical therapy, multi-modale medication approach and daily stretching).
Im not sure if i'll get out tomottow but do need to ask Dr.Bragg about the lower spine and leg/feet symptoms as today even has been a little difficult - I range from sitting upright, to sitting on the side of the bed as I am now to laying on my side to try and prevent worse symptoms. I took a nap and was definitely not very comfortable as I have a low back ache/discomfort now since and not sure how well i'll sleep tongiht despite getting average 7 hours of sleep in the past 48 hrs (if even that much) and not alot in the past 2 weeks either. We will see - it desnt help that because of the surgery 1 hour before and 12 hours post-op (which was about 7:30-8 tonight) I got a very large stress dose of solucrted which is a steroid and can cause inability to sleep. Yay, lol.
More soon,
Erica
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