These are the days I would trade and be somebody else; as my Infusion Nurse said and I often say as well after she commented "I don't know how you do it", she then commented and I agree "One day at a time, right!?" Between stomach spasms (very odd, haven't had those since before the shunt infection was treated last Dec.) and the shunts replaced/moved. I think the TPL shunt valve sitting in my thoracic spine has shifted or something as every time I move or sit back I can now feel the valve for the past 5 or so days and is especially annoying. Probably my 2 biggest dislikes in life are the thought of anything to do w the ribs (and the valve seems to be rubbing against these) as well the other is anything to do w the nose. No-less this has been especially uncomfortable and especially sitting back is super sensitive; more often than not the past few days I have sat semi-sideways which in turn puts excess pressure on the upper spine/neck I guess bc I don't have full-normal movement in my neck.
At the Pain Mngmt Appt the other day, something she usually does per her exam but my PM dr wanted to look at my back to make sure all newer and previous (older) shunt/spine incisions looked "ok". She commented that there cont's to be some swelling/fluid at the former lumbar shunt (last opened up, shunt removed in Dec.) and was concerned about that; I've noticed the CSF pocket but isn't big enough to cause a problem, if anything it could be bigger! =) The valve is higher up in the thoracic area of the spine + definitely is loose/moves around or something. I think Dr. Bragg had put a pin or something in to hold it in place when she changed the valve back in winter and told me to be careful how I moved/lifted (or it was something along those lines she had advised) as she said it could come loose. I wonder now if it has? Not painful but is odd and kind of un-comfortable and can definitely feel the valve seeming to move + not a comfortable feeling at all! Definitely hope it improves as I believe Dr. Bragg is out next week and although I don't know what date they are looking at for the shunt revision yet, (another fun matter bc then I am still waiting to give other people answers on things I've been asked if I would do) I am guessing, hopefully the shunt revision will be mid-June that way I can do the things I have planned and not have to move to much around? Hopefully I would know an actual date tomorrow (Weds)? Dr.Bragg had said she would be out for a minor procedure/surgery I believe next week so I realllyyy need this valve to settle down and not be an issue not to mention the Hand surgery is next week and VBS the following. Grr to MPS and especially right now!
I think I posted this last week but the Cardiothoracic Surgeon's Secretary at CHW called last Thurs wanting to schedule those appts (not sure if she also was scheduling surgery or that will come at the initial mtng), I know Dr.Earing wants to get this done soon, after Dr.Bragg releases me on her end from the shunt surgery recovery. The hospital that Dr.Earing (Cardiologist) and the Cardiothoracic Surgeon are at is a Children's Hospital with a pretty large team of Specialists (3 Board Certified/trained ACHD drs) and the largest ACHD patient program in WI. The Children's Hospital is ranked #3 Nationally and is ranked #7 for Congenital Heart care/surgery in the Nation. I don't know much about the Surgeon or for that matter yet how long they expect the valve replacement(s) surgery to last or even what they tentatively think in-patient post-op length might be. I've heard as short as a week from a couple Adults and as long as 3 months, all where MPS I Adults. Seems pretty variable, I guess?... the shorter end would be nice and for all to go smoothly would be great! I was initially for a long time freaakkkkeeeddd out about this surgery but have come to the conclusion from talking to other Adults both with and without MPS that the surgery itself and recovery may not be to different than a spine surgery and the first few weeks the hardest. A few patients where even back to driving after a few weeks, I pray that is me! Dr.Earing as I've written thinks that post-op is going to be the most difficult (because of the restrictive lung issues, hydrocephalus/shunts, Endocrine-steroid issues and all the other potentially complicating factors that will likely affect this surgery) but maybe i'll sail through relatively easily? . Who knows, but I can hope!
Surgery will be scheduled so Dr. Earing (my Cardiologist) can be in the OR w the Surgeon (Dr. Mitchell) and so that Dr. Earing (per his wishes) can follow my care alongside the Surgeon "to make sure everything is being done and monitored appropriately due to your underlying issues". I have to call the Secretary for Dr.Mitchell back as soon as I know when Dr.Bragg's surgery is planned for so they can schedule appts w Dr.Mitchell/Dr.Earing and plan the actual surgery time.
My primary Insurance is an HMO but Dr. Earing (Cardiologist) is an out-of-network specialist w in-network approval (as is Dr.Bragg, Neurosurgery (UW), Dr. Mass in Endocrine (FMLH) and a couple other of the specialists.) The reason primarily these drs where approved as 'out-of-network, in-network' exceptions is Dean's Specialists reviewed my records and told my Insurance-Nurse Case Manager my care and issues where to complex and needed to con't to be followed by the sub-specialists when we switched from the Point-of-Service plan to the HMO plan and they did not feel comfortable seeing/following me. Good for me atleast! :)
On a completely side note this is the 3rd time a different provider has asked me about referring a patient of theirs to Dr.Bragg, previously my Pain Mngmt dr planned to/is referring a shunt patient of hers, and my Cardiologist's Nurse just last week also asked me about sending a patient of theirs with complicated shunt issues to her. Today it was my Neuro-Endocrine dr talking about a patient in a similar situation as I was prior to finding Dr.Bragg, where the original Neurosurgeon put in the shunt, revised it a time or two and then refused to see the patient any longer. Since my Endocrine dr works w the Neurosurgeon's at FMLH she often sees the patients that have secondary endocrine issues as a result of shunt/hydrocephalus (or in this case Pseudotumor Cerebri) and was a huge advocate on my behalf that I was having shunt issues when my former Neurosurgeon and some of my other drs didn't really believe it (due mostly to ventricles). All 3 providers comment how impressed they are with Dr.Bragg's persistence, willingness to learn more about MPS and willingness to keep helping in addition her willingness to have taken on my case when essentially she was then dealing with "someone else's work". All have raved about her although thinking about it off-hand I think only 2 of the 3 have spoken with her one or more times and Dr.Maas I think might have? I can't remember back in the beginning especially.. I think they are just impressed that she took on my case, has stuck with me and is so willing to "think outside the box" and "talk to other provider's if she has questions". I know how good she is and has been with my care and her willingness to answer my never-ending (i'm sure) questions in addition to her patience with an pretty complicated situation! I am glad others of my provider's recognize how good of a provider she is. In all actuality I am pretty impressed with how many of my "core" drs now share patients with each other; Pain Mngmt shares multiple of my Cardiologists patients due to referrals from him and likewise from her to him after I had such good luck with each provider and they cont'd to see this through the many up's and down's. I think also she (Pain Mngmt) saw his diligence in following my care and piecing out that the issues aren't just cardiac or lung but he looks at the whole picture (which is something all 4 of these core drs are great about, looking at the big picture in the context of their specialty/issue) when it comes to the MPS dx which not to many drs take in to account a patients entire health picture vs just focusing on what they are trained in. My Endocrine dr shares multiple pts with my Cardiologist and with Dr.Bratanow (Pain Mngmt). Now they are starting to refer patients to Madison to Dr.Bragg, I think bc I've had such good luck with her. I think all 4 are great providers so I am glad other patients get to have them and benefit from their experience/caring/knowledge!
Otherwise the Pre-Op Appt is this Friday with my Primary (Internal Med) dr and the plan remains to do the Hand surgery with just a regional nerve block. The actual surgery will consist of a 3rd and more in-depth (hard to believe they can get anymore detailed than last time) carpal tunnel release, tenosynovectomy (cleaning out the tendons in the hand I guess) and the hyopthenar fat pad transfer. Initial follow up is a week after surgery where the bandages are changed and then the post-op fup is 2 weeks post-surgery. I am not entirely sure actually how long the dressing/splint stay on with this surgery? Never actually thought to ask.
I also have to call and schedule botox injections, I haven't done these since late last fall and my regular dr who did it then is out I think until August yet but my appeal to see a PMR dr that Dr.Bragg and her Nurse recommended cont's to be denied. My PCP called and spoke to the Med Director at Dean but their denial was based on "an in-network provider can do these" which is true but not the whole picture. I can always use my secondary insurance to see this other provider or I can also appeal w Dr.Bragg/her nurse's help (Lisa has offered to help if I want her to in the past with this) to Dean as a patient. I am not entirely sure what I am going to do yet but I did give my Dad the records to have faxed by the Secretary at his work to this other (out of network) PMR dr. I can and probably will appeal the denial but in the mean time think I will have the botox done by one of Dr.Mangin's (my current dr, a Neurologist doing the botox) partners as the neck/shoulder and back muscles are crazy annoyed despite on-going PT.
Thurs I also see the dentist again for a cleaning and I guess molds as 2 back teeth that where cracked w separate anesthesia intubations are going to be pulled by the Dental School's Oral Surgery Dept.. Yippee.
Never actually ends, all this "fun, fun, fun"!
Will update when I know a shunt revision surgery date and appt dates w the Cardiothoracic Surgeon.
Thanks for stopping by,
Erica
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