Dr.Bragg came by this morning as usual and felt that the nerves in my thoracic spine cont to need time to heal especially because there is such little space and there is so little CSF (spine fluid) so the catheter has little area and rubs on the spinal nerves in this area. She turned the LP shunt up to 2.0 and left the VP shunt at 1.0 but I am unsure what she will do with this information if the symptoms where o stay the same. I am unsure if she would just give it more time to heal or would she want to move the lumbar-to-thoracic catheter as she has mentioned previously. I just dont know yet what her plan would be or even how long before id get released from being in-patient.
Ive had several people ask me if this surgery to place the 2nd shunt was worth it, honestly I know people just dont get it bc I look fine and as ive talked about in the past I generally go out less when I dont feel well and I also go out mostly in the late afternoon as that is the time of day I feel best when there is shunt issues or even when there just wasnt enough CSF being drained. I dont know really know how to answer people's question on this bc yes, this has been a really slow progress and yes it probably does seem like to others ive not had progress but with having MPS ive learned to not always expect perfection with a surgery right away or even to expect an answer to health issues to be clear. Sometimes it's a few weeks or a few months (as was the case with my c-spine surgery, my 1st lumbar revision and spine surgery with Dr.Bragg last spring and even my thenar-tendon replacement surgery 1 1/2 yrs ago which took a long, time to get improvement and be able to use it pretty normally. With this surgery I dont think any of us expected to have to still be in-patient 2 weeks after the 2nd shunt was placed and have this on-going referred pain but I also know despite the ups and downs in symptoms that this shunt HAS made the overall headaches improved and made the 1st shunt (the VP) more stable as far as the intermittent occlusions and thus intermittent symtpoms of autonomic issues. Is symptoms perfect? No. Does it probably seem like nothing was gained to those around me? Yes, im sure it does seem that way. Was it worth it to me to have to go through all of this? I think so. I believe time will tell but I dont think I will regret it because I know despite looking pretty good to most people (bc the 1st shunt did work fairly well it was more that I had significant vision issues as well as issues with sleep and my shunts where failing almost on a every other week basis requiring shunt revisions nearly every month or in some months several times a month. Our hope is with the 2nd shunt it will take some pressure of the 1st shunt and make the 2 shunts work more in tandem and balance pressure equally thus have less shunt failures and need for revisions as 1 shunt will have less work to do bc of the over-production if the CSF along with the changes that MPS causes to the brain and ventricles with stiffness and compliance. I am as I tend to say a 1 day at a time person and I try to look at things 1st with how will this day be and how can I made this days issues better before I try to tackle issues that will happen tomorrow or 5 days from now much less a month or more from now.
I know alot of people dont understand my life and how I can look so fine and yet have these significant issues and frankly im not going to sit here and try to make someone understand it but I do wish if people where going to question me they could atleast try to accept my decisions and answers. I may not be right but I have a neurosurgeon who is the one behind my care planning it and talking to others in the adult and pediatric neurosurg field and so I generally most of the time feel comfortable with what she decides and gather information plus dont take decision making lightly.
I hope to those reading this you can understand if you yourself are not sick but know someone who is most people struggle with what they should do with their care and we really just either need support or someone who will stand beside us and kick some ass if we dont feel up to it but arent getting the care thats needed. On the flip side of that statement try not to underestimate a patietnts decisions and insread ask question (but not accusingly) in order to get more informed but dont question them as if they have no clue whats going on and are simply making baseless, ill-infomred decisions.
On a different note please say a prayer for a cousin of mine who was in a serious ATV accident and in a induced coma now due to brain swelling - he has a shunt (due to congenital hydro) and we pray he will heal well.
God Bless amd Be well,
Erica
Erica
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