Surgery -
I cant remember which part of the surgery Dr,Bragg said she was doing but maybe taking out an old, partially occluded catheter when she said they had problems with bleeding again (much like in Dec) and so she wasnt surprised I would have brusing and there was blood on the stapled gauze they placed over the scalp incision when closing as she said it took a while to get this back under control much like back in Dec. The likely reason for this is the catheters and tubing get adhesed to the tissue so quickly perhaps as a 'side effect' (?) of the MPS storage causing an encassing of sorts?
She also said she hasnt seen the pressure this openly high other than with our lumbar external drain placement last spring when the CSF shot out and covered her from chest down to her shoes it was so elevated / high. I think sometimes she is reassured by these odd moments, not bc she doesnt beleive we have an pressure issue but because then if there is anyone second guessing her decisions sha has backup? I honestly dont kmow and doesnt really matter as she cares, goes out of her way to try and help and cont's to think of outside of the box ideas with in the box options. I always know when there is pressure so wasnt surprised I guess when she said she got such a quick and heavy CSF spray/emptying but it does provide the reassurance that I sometimes have really lacked in my own judgement calls regarding these headaches and pressure, symptoms, etc. I am glad she shared the info about the pressure having been so increased. She did say she thinks the VP shunt was likely doing a slow or intermittent 'drip, drip' versus what would be better with the shunt if it where draining properly continually as is needed. She also said that the valve was very clearly partially or near fully occluded with (brain?) material so she was surprised it was dripping at all as she had been worried it wouldnt be and so the need to not completely replace all of the shunt component in the head. I told ber I had also thought the shunt was working just not particulatly well. Yay, to our being right and to new things to try + Dr.Bragg's incredible gift of perseverence and just plain believing in me! I am thankful for her and for a faith that carries me through even when I am struggling - a God that is truly an AWESOME God!
She took out both the mini-nav (something like a valve but was not an actual valve) and the Miethke shunt assistant which also was not a valve and acted as a one-way device to keep CSF from coming back up the shunt. In place of both of these devices she placed a Cofman Hakim valve which gives us 20- settings to chose from for drainage starting at 20 and going as high as 200H20. She did not place the siphon guard with this valve (which I am also happy about as she said she wanted to stay with as simple as possible while also giving us a good chance for success with improving the headaches and other symptoms. A magnetic wand is also used to adjust the settings on this new Codman valve although w this it also requires an Xray to verify correct placement and w the PS Medical Strata valve only the magnetic wand is requied for pressure adjustments.
Anesthesia was with another Anesthestiologist ive had a few times before + a CRNA and the Anesthesia Resident and according to Dr.Bragg went fantastically well - she is continually amazed how difficukt this part of the surgeries is. I am glad that went well and does also then make the whole case go alot faster.
Late last week I got a friend request but wasnt sure who the person was so I sent an in-box pm and then heard back the next day. Turns out this lady (unsure how old she is) is also a patient of Dr.Bragg's (Spina Bifida, Hydrocephalus I believe where her dx's) and though she couldnt remember how she found my blog she said she has been following/reading it; very cool! :) That is the 2nd friend request in as many weeks from a patient/family of the Peds Neurosurgery dept w the 1st time being her partners patient and the Mom is volunteer director at the WI Pediartic Hydrocephalus group and she had found me through a mutual page of a little boy we both follow here in WI, unrelated to Hydro.
I ended up getting about an hour of sleep last night despite trying to go to bed early as I had to get up at 3 to shower and finish packing, round up my cats, feed the outside cats, etc and then drive over to my parents which arent to far from where I live (one city over, 15 minute drive typically) + an hour from their house to Madison to the hospital. In trying to fall asleep I must have gotten up 5 times in the first hour alone and wasnt sure I could take the OTC bladder med I take at night alongside the Toviaz (for the nerve-spine bladder signal issues) which didnt help. I am actually almost impatiently waiting for the appt w Dr.Maskel in April (new Urologist) as I am reeealllyyy hoping she can help figure this yuckiness out!?..)
All for now, will update if anything new,
Erica
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