I apologize I wrote part of this after last weeks appt meaning to at the very least finish it after yesterday's fup appt with Dr.Bragg and I didn't so I will try to keep it semi short (don't fall laughing). ;0) I'll update the Cardiology EP Study info and then update Dr.Bragg's stuff from Monday below the update from last Thurs.
So the EP Study Procedure (heart catheterization and ablation, a test where catheters are threaded up the legs through the groin to the heart) is scheduled for next Weds, July 1st at 7:30 with a 6:00 arrival.
The Anesthesiologist who has done all previous cardiac surgeries (2) and the separate TEE (Trans Echo, basically a probe inserted down the throat under sedation) at CHW is out of town next wk (she was sweet enough to message me after talking to my EP dr and the Nurses to give them a heads up on what she would recommend as far as an anesthesia approach).
Anyways bc she is gone i'll meet someone else which I guess isn't a bad thing BUT doesn't make it any less slight nerve wracking having someone unfamiliar with airway! Trust, just gotta trust, right?
We are opting to do this Heart catheter via conscious sedation which I am fine w for 2 reasons (my choice and the suspected Arrhythmia per my EP dr. has the best chance of being captured when a pt is at minimum semi-conscious). Apparently per a CHD fb forum I am on many of the women there think I am nuts for doing a possible ablation under this form of anesthesia but I'm not sure how it could be that bad (knock on wood)?
In any case I am unsure how long it is expected it would/could take but the "recovery" (laying still - hope they realize I aint gonna be layin me no flat!) is 4-6hrs after the procedure and then you are able to go home. The procedure normally done w 1 EP dr is scheduled w my dr and his Partner in case they do have to do an ablation, apparently it takes more hands or more involved which atleast if needed it will all be done in 1 sitting.
Following this EP Study/probable (potential) ablation Dr.Kovach and Dr.Earing feel we'll likely start the new heart failure med (Evabradine) though they expect even though they'll have the data from the EP Study (apparently required in order to use this med) they may have to get IRB approval from CHW and request it from the Drug manufacturer (perhaps b/c it is so new and sub-specialized?).. It also will have to be appealed via a prior auth to my insurance as it is not yet on their formulary but in that case my Cardiologist apparently knows the Dean Medical Director well and my Insur. Nurse Case Manager didn't think we'd have an issue. So we'll see? Perhaps we'll get lucky enough and the ablation alone would work but neither seem to be to optimistic about that (either way we have to do the EP Study to get information for the med which works to modify the sinus node and how that works I guess).
No matter any of this it seems Dr.Earing thinks we'll have to replace the mitral valve sooner than later as it is causing (adding to?) decreased oxygen levels w minimal exercise (per a 6MWT they did), increased pulmonary venous pressures and the mitral valve keeps worsening (faster than he had hoped) which he suspects all adds to our symptom issues to.
Update on Monday's and Thurs Appts, Neurosurgery :
Today's Appt (Thurs last wk) with Dr.Bragg went well, I won't lie I was really nervous and really was not feeling great on and off throughout the day so I just was hoping it would go well, which it seemed to.
Dr.Bragg opted to turn down the Codman valve setting to the final lowest level (30 or what equates to a 3 in CSF numbers I guess) - I am glad she did though also admittedly was nervous would it further irritate the spine nerves/stiffness that has been so prevalent since a few wks ago? So far I can tell a small difference w the drainage (I can always tell within a 1/2hr-to an hr period generally) though I think if we had that drainage + some it would be much better.
As far as what she is thinking she brought back up potentially replacing the current Codman Hakim valve with the .5 mininav valve which has a little more resistance (to drainage) than the 0 pressure valve we had but still would she feels allow more CSF to drain then the current valve we have. A bonus to that valve I suppose it is not programmable so would be no issue with imaging, etc. I am obviously a little concerned it would further exacerbate the really badly irritated spine nerves but at the same time I feel like we need to do something.. I really wish we had the 2 shunts draining from 2 locations and can't help but think since there appears to be better drainage from the lumbar space than was the thoracic space it together w a VP Shunt would just work overall better. =/?
We talked about the cardiac stuff, the upcoming EP Study which Dr.Kovach's Team is scheduling (likely for July) but he 1st wanted a chance to review the Holter (24hr continuous EKG) monitor and see if there was any clear evidence on it for an arrhythmia - he suspects based off a quick EKG done at his Appt last wk that there may be an ectopic atrial tachycardia but isn't for certain. Should he find clear evidence on the Holter he said he would be scheduling the EP Study for a longer than is typical period so he and a 2nd pair of hands could ablate the arrhythmia (problem area) while they where doing the catheter study. Otherwise I am uncertain offhand how long a typical EP (heart rhythm) catheter study takes. I had one 11 or so yrs ago but details are pretty fuzzy!
Anyways Dr.Bragg just asked that I f/up with her next wk apologizing for making me come back to see her again. While not ideal to have to drive there again I was atleast on a slightly positive spin able to re-arrange my weekly ERT Infusion and will do that on Tues now + have another Appt on Thurs. I can't remember for sure but I think she wanted this so we could eval how the change in setting went which it did help and albeit far from perfect atleast I wasn't throwing up at night and that is/was an improvement I was happy to take!
She did tap the LP Shunt at Monday's Appt and take off if I remembering around 9ml of fluid which helped a great deal for the most part of Monday. I had hoped it would help me get through 1 night of not waking up a zillion times having to go to the bathroom but that was not to be the case. Instead of (no lie) 6-7-8 times I think I only got up around 4-5 times Monday night. I don't know why pressure at night seems affect need to get up and pee so much but others I know w MPS have experienced the same when having issues. It seems to be a autonomic thing.
As far as a plan she is going to figure a plan out and work with her Secretary to make it happen. Stay tuned on that.. I really, really hope whatever we decide to do helps without causing the often severe spine-nerve irritation I get both when we drain more and at times like yesterday when we did tap the shunt and drew off a semi-larger amount.
Dean Insurance Out of Network (Provider) In-Network exceptions:
On a good side note all but 1 of the 2015-16 DHP (Insur.) out of network, in-network prior auths for July 1 are back and approved including 1 or 2 unexpected ones (that I otherwise use my secondary insur. for). - There are 2 my Case Manager called me about today and was going to go back to the Med Director and have amended to include further wording/testing but otherwise it is good! Always nice when this is done albeit Marge and my PMD do the majority of the effort and I just weight in. =)
In any case i'll update again when there's something to update about,
Thanks for stopping by
Erica
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