I saw Dr.Bragg today for 2 week fup from getting out of the hospital (about 6 weeks since surgery to place the 2nd shunt and laminectomy/decompression in lumbar spine) and all was fine or as fine as we expect it to be as the spine nerves cont to heal. She did say interestingly she has been listening for anything from others about LP shunts causing/affecting mid-back nerve irritation and since knowing about my issues and our dealing with this she has heard from 2 of her partners patients who also have LP shunta that they also have similar type of pain/discomfort/irritation. She said it is very likely from internittent shunt catheter rubbing on the nerves and arachnoid space (one of 3 protective layers of the spine) and we just cont to wait and hope this will improve. Right now from being a definite 10 at re-admit it is a 4-5 which in my book isnt awesome but also isnt anywhere near as bad as it was and thankfully still just cont to be worse with things like this (sitting, driving, typing) which are the ironies since typing and driving are 2 of the things I do most. Otherwise the headaches we didnt really talk about but there is always the option to turn the 2nd shunt down the final setting if we so desired at fup (in a month) and if the mid-spine nerves would improve we had previously talked about we could even take the programmable valve out all-together so the CSF (spinal fluid) could free flow. I think Dr.Bragg's concern is in that the nerves are so irritated already at the low pressure setting on the programmable valve and so little fluid around the thoracic spine would it be even worse pain/discomfort wise? - such a trade off.. Hardly seems fair but hardly can sit around feeling sorry for myself simply bc I wish I didnt have one trade off for the other (nerve irritation and preventing us from draining even further fluid) - atleast I do feel better now with the 2 shunts than I did with just the 1 shunt and the 2 shunts also atleast appear to better balance each other and keep each other working thus preventing the occlusions we where dealing with every couple weeks. Dr.Bragg said to me if she could she would take some of my pain as she felt so bad about trading one issues for another and wanting to just make me feel better headache wise similar as we have with the external lumbar drains. I told her that I wouldnt want her to take some of the pain away as she then wouldnt be good to us her patients and we need good doctors like her who listen, believe us and care which it is true.
Balance, balance, balance and we will figure it all out I do beleive since we have already figured this much out. It is what I like about Dr.Bragg she's persistant and she and her team havent given up. She was sweet in saying I could come in anytime as I always make her laugh but in reality her team has quickly become one of my favorite providers and they to with their easy-going, optimistic (never
give up) attitudes make me laugh as well.
I asked her about my feet going numb and lower lumbar discomfort which is also something my Pain mngmt dr wanted me to ask her about and she thought it could be a result of the multiple laminectomies we've had to do in the past year,
less support (removal of the protective bone covering the spine or in the case of the lumbar spine the nerves as the spinal cord terminates just below the thoracic area) and less 'structure' to basically hold everything up. (think of a ladder, if you take out a link or step on a ladder you basically have the same weight but more precaurious bc of less support for the same weight). I fup with her in a month and since we've had problems with nerve issues in my L leg we are going to take a 'wait and see' approach to the numbness symptoms in my feet (since it is intermittent anyways) and see if it doesnt heal with the spine surgery healing. Hope so!
The one thing I didnt think to ask her (remembering 2 of multiple questions is still something!) :) was about potential botox with her Rehab dr which is ironic bc we where talking about this Dr.Ward and his opinion to her that he had told her about giving the thoracic/spine nerves time to heal from the assault of the surgery vs fiddling with the catheter and causing potentially more irritatiom. I have a message in with my current PMnR dr at FMLH about doing further botox (it's been a little over a year) but think it would help. I know she works with her dr and wonder if it wouldnt be good to have a dr like this at the same hosptial as a specialty like hers - she herself said to email her with any questions so I can always do that if I decide to. I wondered if botox couldnt help prevent leg muscles from becoming so tight so quickly so will probably email/call her and her nurse at some point and ask their opinion as I know it really helped my upper spine/neck (which gets so stiff) when I did that. areas.
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I saw Cardiology on tues (a crazy week) and as I figured we are leaving the new beta blocker dose and lasix dose alone (blood pressure is now super low but feel ok with it) and fup with new AEcho in 6 mo. We cont to just teeter on the edge of everything being very moderate but not severe minus the atrial enlargement which is severe and waiting and watching. We dont want to do valve replacement bc of the harshness this would be with the restrictive lung disease, requiring long term coumadin (mechanical valves) and would likely be double valve replacements. I am defintiely in no hurry for any heart surgery and cracked chest - yuck!
Otherwise I typed this part yesterday but was feeling like clearly this was the week for everything to stack up and weight on my mind; usually I am exceptionally good at putting things out of mind nd just dealing one by one but not this week as everything seemed to have been weighting down. I think partially it was learning info about changes to our insur July1st, the recall election and Walker not actually getting recalled (though we did get control of the senate which should prevent any special sessions till the actual elections in Nov when we can hope we keep senate/assembly control again). and a few other things. I am back at my apt atleast and that is defintiely nice! One by one I think I just had to deal with and sort things out in my mind and in some cases on paper.
Will update again soon, - it is my youngest nephew Zander's 6th b-day today and he is spending sat night here plus headed to see my sister in law, brother and niece sun.
Erica
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