A day late but perhaps not a dollar short writing this and updating on yesterdays neurosurgery appt. The appt was actually moved from mon which when Dr.Bragg's secretary called and asked if I could do Tues instead of mon I was more than willing! Driving an hour to ERT, sitting there for 5 1/2-6 hrs and then driving another 1- 1 1/2 hrs to Madison for a shunt tap, etc and then another hour home did not seem all that appealing! By the end of ERT I was pretty restless (a ton of phone calls that day and paperwork) and just wanted to go home irregardless of how my head felt!
So Dr.Bragg did another shunt tap which worked ok - the shunt valve is set at higher setting so is a double edged sword; we turn down the shunt to drain more and headaches improve temporarily but then the shunt tubing/catheters clog. We turn the valve up 2 settings higher and helps keep the catheter open but we end up with worse headaches due to not enough CSF draining. Neither is awesome... She drained about 20cc and then the discomfort along the shunt catheter began so she stopped. I actually felt aweful last night between chills and sweating (fever of 102) and horrible utterly horrible stiff neck so I pretty well just tried to sleep the majority of the rest of the evening and night on and off. Im not sure what that was about as headaches where better it was just that my neck was soooo stiff everything and everything hurt. By the middle of the night that was improved and this morning completely gone so I think had or has something to do with the flow dynamics and perhaps the narrowing in my neck and rate of which we drained the CSF. I havent ever experienced that before so was a little unnerving!
Some of the things she talked about (while also admitting she needed more time to think about the situation) was to potentially take out the valve but we would have the same problem of keeping the catheter open with the increased flow so she wanted to think about that some. I wondered also thinking about this on the same home what if we turned up the VP shunt to a higher setting and then turned down the LP shunt ie different balance of pressure though I think that would still be the same headaches are only well when both shunts are at lowest settings. =/ Ironically we do know that when both shunts are set at .5 my headaches are completely gone but that is what then leads to the shunt catheter occluding and so then of course headache issues again due to not enough drainage. Its a little humerous really if I didnt feel like such crap given it seems like such a simple answer (turning the 2nd shunt down to .5 again) but we know from our serial shunt tap 'testing' that the catheter then just re-occludes and when turned up to 1.5 the catheter stays open better but not enough CSF draining.
Something we talked about 2 shunt taps ago and which I keep forgetting to ask Dr.Bragg was if she ever found any info on if the external drain catheter sizes are bigger than the actual shunt sizes as she wondered if they where could we use that in place of the shunt kit catheter. I tried search engining (sp?) several different terms regarding that and also pubmed and didnt find any info.. Something to ask. She asked me to email her and let her know how I was over next day or 2 so will maybe ask that.
She was going to look over the last MRIs and see if there might be a better place to put the catheter or if there would be a way to place a 3rd catheter (but not a 3rd shunt) and have it connect to one of the current shunt systems to take some pressure off the 2 shunt catheters (the VP appears to be working well which is good - the LP shunt has definitely helped that last longer!) She wasnt sure about this and wasnt sure where she could even place a 3rd catheter if it where possible but was another thing she was going to ask around about.
Another potential idea was to put the distal (end) catheter in the pleural/lung space (thinking about this on the way home im unsure if that would work due to the restrictive lung disease??) as a different drainage source as it does appear in MPS pts that the peritoneal area doesnt work well in alot of pts.
Another thing she also wondered about was if there wasnt enough CSF in the 2 different compartments where the 2 shunts are and so each shunt helps but if we could figure out a way to create a altogether outside the CSF space area much like with the pseduomeningocele's (CSF fluid filled pockets we dealt with last summer) as that was the best we had as far as symptoms besides the external drains. We know with my cervical (neck) area that it is pretty narrowed and not alot of spinal fluid (CSF) gets through at several levels + there is the area I already have plates and screws in above this and that could be affecting this all though she doesnt believe that would be affecting the headaches. (I dont either as we've gotten complete headache relief is just a matter of keeping the shunts working).
In reality though with this LP shunt I did have a far better appetite (had gained like 9 pds in a period of a few weeks and have since lost same general amount )123 down to 114) in the past 1 1/2 weeks. I had much better appetite with the LP and VP shunts together so while headaches may not have been perfect they where definitely better and that is frustrating!!!! I happen to really like food. = /
She jokingly (im fairly certain she was joiking!) talked about which was kind of funny as I had sort of laughed about the idea to myself before this was putting in a 3rd shunt to trick the 2nd shunt in to working as the 2nd shunt has done a good job of keeping the 1st shunt working. (was that just a mouthful?)I do think she is considering if there would be a way to put in a 3rd catheter (not a shunt) and connect it to 1 or both of the other systems to take off some of the pressure and thus we'd have the headache relief we are having a problem finding the balance for. This seems like the ideal option to me but I also know she didnt really know where to put one if we did and so I dont know what will happen. She asked me to call her nurse early next week and we'll figure something out then. Who knows, who just knows?
On a different note my work with GSF has been going awesomely well and this week in particular has been really busy and putting in quite a few hours. I really like what I do though so not a bad thing! :) Right now we are working on and out details for a meeting at the Boston Conference related to MPS I and pretty exciting times in this crazy, crazy MPS I world. :)
About all for now - waiting for the weekend for something my Mom, sis, nephew and I are doing Sat and then Zan's B-day party on sun which also means seeing my sister-in-law and niece to! I am hoping to feel semi-reasonably human by Sat night (one can wish and hope, right?!) as id like to have Zan spend the night.
Thanks for stopping by,
Erica
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