And so it continues....
Ive said it before but will say it again I am eternally grateful to Dr.Bragg (neurosurgeon) for continuin to want to help me, for believing me and for caring when she easily like many others could just refuse to to anymore in trying to help me..
Today's appt she opted not to tap either of the shunts which was originally the reason for the appt but instead reviewed the MRIs with me and her NP (whom I also really like) as I was telling her about how the headaches cont to be worse anytime I bend my neck even if for very short periods (such as fastening pant buttons, straightening shirt, washing hair, looking at the computer (ive found better ways around this one) and all the little times we un-knowingly bend our necks to do some activity for a short period of another. Originally c-spine MRIs where ordered w the last MRIs done 2 weeks ago but for whichever reason they appear to not have been done and she when thinking about this H/A w/neck position issue wanted to make sure there isnt a phenomena of induced chiari (where the tissue of the brain is pulled down and essentially plugs the brain stem area - I think I have that right?) and/or to check the area around the previous laminoplasty (screws/plates) at C2-4 for position and is there narrowing in these areas or above/below these previous decompression/partial fusion as compression is a common issue in MPS pts spines. It looks like that is scheduled for next thurs) - her NP was trying to see about getting it done today but since this 1. isnt Dr.Bragg's normal clinic day and 2. she has to reset the 2 shunts after any MRI imaging we opted to schedule for one of her clinic days.
She again talked about some options she has been thinking further about including is there an absorption issue going on w the 2 shunts being in my peritoneum (a pocket of the stomach essentially) and would it be useful to externalize 1 or both of the 2 shunts either at the peritoneum area or for the VP shunt at the chest level and see if these while being 'open' and 'functioning' but draining outside the body bring better symptom relief and more efficacy similar to the external drains but this time using my own shunt)s) as the external drain and then when done w the external drain she would just have to revise those areas and replace that specific parts vs having to monkey with the 'minefield' that is my lower back. She wondered from a few articles she has read and 1 I sent her if in MPS we have absorption issues secondary to storage (I think thats how she put it) could the shunts conceivbly work better in a diferent way, she doesnt know as we have restriction in almost all organs and even our skin is very tight and thickened but she has experience w other patients (non-MPS) who the distal catheter has been moved to the chest and because of the increased back pressure this area provides (vs the peritoneum) that that might help keep 1 or both shunts functioning better. She thought possibly moving the distal end of 1 or both shunts to the chest area after a trial might be a good idea to see if draining here would be more efficacious. -Clearly we dont know but feel like we have to explore various ideas as right now it isnt working as well as it should given the on-going symptoms I have and yet how good of symptom relief I had with the lumbar external drain trial (prior to our placing the 2nd shunt) and the same w the Ventricular external drain last fall and the pseudomeningocele (fluid collection pocket under the skin) we dealt with but which I had no symptoms during.
Another possible option is to move the trajectory of the VP shunt from the inner ventricle where the ventricle catheter now sits in to the back of the head where she could get a better angle of catheter placement in to the ventricle and where there is more area (again I think thats what it was) to work with in placing the catheter given the very tiny ventricles.
I am sure I am forgetting some things as we literally talked about many ideas and possible options between Dr.Bragg, Sue (NP) and myself.
Nothing is ruled in or out yet as far as what we will do to manage this shunt(s) issues but we are getting closer to narrowing down our options and what we might try. Too quote Dr.Bragg "she still has a bag of tricks we can try." - for that I am grateful as this shunt stuff does wear you down. I sometimes actually laugh to myself bc I know even when I am in pain the vast majority of the time I dont look like it and can still be engaged and asking questions and sometimes I think that can actullay w many providers be a downfall as they cant look past "how good you look" and so I am grateful she and her staff try to help seeming w/these endless issues and can look past how I "appear" to know me well enough that I am not simply making up what I say.
I am grateful,
Erica
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