Hi All,
I saw Dr.Bragg today and because the symptoms where so quick to come back yet again on tues after mondays tap in which we took off about 20cc's of CSF and turned the shunt down to the lowest setting she did another shunt tap and actually ended up tapping the VP shunt as well to drain CSF. The LP shunt tap was slooowwww and just to get off a couple cc's it took us close to 15+ mins I think which compared to when we had the external lumbar drain in pre-this LP shunt we could drain that much CSF in a matter of a few very short mins - typically under 2 mins I belive it was w the drain vs this amount of time now. She tried both letting the tap free flow/drip as well as applying pressure/pulling back on the needle to get fluid off and many times commented how slow it was, sluggish and just abnormal. After she removed the needle the first time and the re-tapped the lumbar drain the CSF was again the sandy color although no debris this time so we arent sure what that is about. She had me sit up and we tried to see if the reservoir/shunt would drain better that way and no real change + both laying down and sitting up cont's to re-produce the pain from my L side back to the shunt line and around right to the valve and reservoir. She thinks maybe this catheter in spine is sitting up against a nerve root (not a great thing I gathered) and causing the discomfort - without even watching what she was doing I could completely tell when she was draining and when she was applying pressure to the needle vs taking a break - YEOUCH! Think of a dull knife being shoved in to your side and then someone kicking you in the back at the same time and applying pressure and that my friends is exactly what this shunt tubing feels like. Holy batman I say let me off! After she couldnt get much CSF off the LP shunt she tapped the VP shunt which was functioning fine and I could hear the bubbling but almost reassuring sound of the CSF draining (it's not a bad sound, just interesting) and she drained around 20cc's total till that to wouldnt drain anymore (but the reservoir wasnt depressed so we think may have just gotten air in) - I feel awesome tonight and could tell almost right away. I cant say how nice it is to feel good and not have symptoms even temporarily even though I know by either tonight or tomorrow i'll be back to feeling crummy again for the weekend. She did turn the LP shunt valve back up to 1.5 to see if it will help force open the catheter again.
One of the things she mentioned if we end up re-revising this shunt is possibly taking out the valve on the lumbar shunt altogether so there would be free flow of CSF but she also mentioned wondering if this would still prevent the ends of the catheter where there are tiny slits that drain the cerebral spinal fluid from clogging once again or not wbich is our cont'd problem.
Her other thing she brought up was possibly threading the spinal catheter up even higher in to the upper thoracic region (currently sits lower thoracic around T7) or even past that to the mid or upper c-spine area although with this which we talked about just briefly at the end of the appt she said she had concerns with there being so little CSF (spinal fluid) in the area already and the space being so congenitally narrowed (she showed me the MRIs of thoracic and c-spine the other day and the c-spine area was slimmer than a pencil or straw I think she had said and is very little fluid there.) There of course would be the concern of the previous c-spine surgery at C2-4 and hardware although that I believe sits outside of the actual spinal fluid canal (??)
She also mentioned possibly threading the catheter lower still than it is or has been but didnt seem to like this idea, I think bc there is so much scar tissue in my lumbar spine she wants to try and create a completely new incision and go above all the previous lumbar surgeries. She was going to cont to think some more on this over the weekend and we'd re-convene monday and see how the shunt tap goes with the valve reset at 1.5 again and if CSF flow is easier. I like that she is taking her time and trying to figure out the best solution and has all along as we clearly have no simple or easy answer for what to do with this shunt,
I see her for one last (we hope!) shunt tap on monday for which she is seeing me outside of her normal clinic as I first have to go to milw for ERT which takes about 5 hours total there and then about an hour drive to Dr.Bragg's clinic later in the afternoon. I figure i'll go in to ERT earlier than normal on monday. At this appt we'll also figure out what we want to or rather should do with the shunt issue ie if revision or what.
Otherwise its been a chaotic week working on some things for the advocacy-foundation position and gathering info which is time consuming (but not bad) and some tentatively good news with research there which is about all I can say so far.
I also have been caught up gathering info (thankfully with the help of my insurance CM) on a few providers I am tentatively going to switch as well as making sure paperwork is in before July 1 and also taking notes and numbers regarding some potential PCP's, My CM was given good reviews by a Pediatrician she knows through Dean of a Family Practice primary doc and also good reviews by the clinic staff of another Internal Med Primary dr who is younger and new to Dean/practice but apparently interested in my kind of cases. I plan to spend part of Mondays ERT calling these places as well as the 2 other potential new specialists (a Hand surgeon though I like mine and so highly recommended!) and a PMR doc of which there are 2 potential options. Dean has so far approved Neurosurgery (hallelujah-amazing!) as in-network which my CM advocated for not having to change due to Dr.Bragg's knowledge and our on-going issues w the shunts, spine. The other 3 that are approved so far and easily where Neuro-Endocrine, Genetics and weekly ERT/infusion as the UW Genetics-metabolic doc told my CM I was better off staying at CHW which I figured. The 2 other big ones to me are Cardiology (bc he's adult congenital and the issues go beyond just the heart issues but having experience with the associated issues like restrictive lung disease and autonomic issues as well as understanding the Endocrine impact. The other is my Pain Mngmt dr and i'll fight that one tooth and nail - I very highly doubt the PMR doctor (who I otherwise seen at FMLH for botox) really does good long term Pain Management. It's definitely at times been a little stressful with this and completely not going to be awesome having to start over with yet another new PCP since I just did this 3 yrs ago when my Family Practice doc went to be a hospitalist and we're in a decent place now. =/ Not perfect but decent! I think i'll probably start by emailing the 2 names ive been given personally as it cant hurt.
Stay tuned is about all I can say - never dull. .... Hopefully this weekend will be semi-ok it sure would be nice to have a little energy and a little less headache and associated symptoms to go swimming, potentially going down to my sister-in-laws on sun and other things. I can hope atleast! :)
More soon, thanks for stopping by.
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Erica
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