Just a quick note - I called and spoke with my neurosurgeon nurse for quite a while this morning, I like her and know she wouldnt mince words but I also know she wouldnt just say something just to say it to me and is honest. I was really upset about all of this and it bothers me that this would be the 3rd ICP monitor and feeling like my neurosurgeons colleagues are almost convincing her that im not really presenting with symptoms though she herself has said to me so many times over the past 6 or so months that while the effects have never been long standing she has seen how good it can be/I feel when the shunt was working well. Im just not comfortable doing another 'blind' ICP study and not really having a clear answer what we hope to gain. Sure I would love to not have this shunt and that has nothing to do with why I feel like I need to gain more information before just jumping in to that. I think my neurosurgeon belives me but I think also her colleagues because I dont present clear cut have never met me and non of them where on my original team back when the shunt was first done and none saw the improvements after each of the LP's. Like I think I said before it is hard not having my former PCP to vouch for me (now a hospitalist) nor my former metabolic-neurologist who also saw me and had seen more cases of high pressure/hydro in MPS pts than any other neurologist or neurosurgeon anywhere so he knew what to look for and how it presented. They didnt see how it used to get so bad I literally would be driving somewhere and would pull off to the side of the road, open my car door to throw up and then keep going because it was everyday and I still was working + had many other MPS things going on. My sister called this morning and was just blown away by all this and frustrated that once again because I dont 'look' (in appearance) like the average MPS pt and I dont always present the same that someone, especially she said drs who had never met me would assume I just didnt have anything and was mis-diagnosed from the start. At one appt several years before my neurosurgeon came to this practice her colleague when I was referred to him accused me of being a drug seeker even though I had not once asked anything about medication AND I had a Pain mngmt dr who was so upset when she heard this as she knew how bad I was feeling but also knew I wasnt the type to go behind her back. She trusted me and was upset that this other dr had never bothered to talk to her first before jumping to an assumption about me. Thus im sure is why you, the reader can see why I trust this other colleague of hers not an ounce and why it all bothers me. Sure he may be a good dr and many may like him but I dont and I dont trust him. Brains matter little to me if the dr has no respect of the patient and cant get past their perceived indifference of a patient to actually get the story. Some may wonder what happened to my former neurosurgeon and honestly thats a 'no easy answer' line of question. My Neuro-Endocrine dr told me she works with him and his colleagues (at a different hospital) and that he had dropped another of her difficult patients to basically because that patient also had multiple revisions and he didnt want to deal with it though I honestly think it had far more to do with problems with his NP than with him. My former GC and former PCP both refused to talk to her (the NP) as she was so blatantly rude (I happened to be listening to a conference call my Geneticist had with this NP before my first revision when I had a golf ball sized and growing pocket of fluid on my low back and the NP flat out told my Geneticist he was wrong. He was irate as clearly he could see it and knew it hadnt been there at the previous weeks ERT infusion. I apparently have sucky luck with male neurosurgeons or their staff although I do remember his nurse and secretary where very nice. I dont want this to seem like I dont think my neurosurgeon believes me I just think she isnt sure what to do and is being told things by her colleagues and imsure it is hard.
So anyways in talking to her nurse today I asked instead of jumping in to the ICP and resulting issues could I think about it? We agreed id do this and call her back this afternoon. I was really upset by this time by it all because I know others have seen how good this is from my parents who I see a couple times a week, to my sister, my Physical Therapist (who again last week just commented on how much different the systemic change is to my body even despite all our issues with the shunts because we've had it working on and off and the difference this had on tissue swelling, muscles, etc is stark to him. I cant quite explain it like he did but it completely made sense how when there is pressure it affects your whole body. Other providers have seen the increase in energy, the endocrine improvements over time (and then associated decreases with pressur re-building up and improvements over and over) as well as the actually quite amazing positive affect on GI system (constipation improves completely) to the autonomic improvements such as temp regulation/sweating issues going away and blood sugar issues stabilizing among other things. I called and talked to my Mom as I and we decded we'd like to meet with my neurosurgeon and talk about all this more (parents dont usually go to appts because of work and sheer number of issues beyond just neurologic I see drs for and I am a capable adult who can manage it on my own and prefer to for my own sanity most of time. (thats just me) They've set up an appt tomorrow afternoon so I wrote down a few things to bring up like I did here and also a few questions such as wouldnt I be getting low pressure headaches if the shunt where doing harm/werent pressure and a few other things such as why all these other symptoms always improve amongst a couple other things.
I'll update when I can tomorrow night or thurs.
Erica
No comments:
Post a Comment