tag:blogger.com,1999:blog-1995645300335467747.post6771950002929028782..comments2023-05-20T05:15:48.191-05:00Comments on The Wheel of Fortuna: Reflecting on the causes of BR's painstevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-1995645300335467747.post-79840718892962672532009-04-07T14:49:00.000-05:002009-04-07T14:49:00.000-05:00Kim -Girl, I don't know . . .Kim -<BR/><BR/>Girl, I don't know . . .Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1995645300335467747.post-20028866852759871062009-04-07T13:56:00.000-05:002009-04-07T13:56:00.000-05:00So on the one hand, the doctor agrees with you, bu...So on the one hand, the doctor agrees with you, but on the other, he/she doesn't actually do anything about it beyond agreeing with you. Mind boggling. How do you guys deal with this over and over again? I'm frustrated by all this from hundreds of miles away!<BR/><BR/>Would BR be able to go through the procedure again if it was warranted? Would insurance cover it? I am probably missing an important piece of information about how MS works, but it seems odd that they wouldn't do both placements given what the care team knows of BR's pain issues. <BR/><BR/>I know, I know, preaching to the choir, right?Kimhttps://www.blogger.com/profile/08742904223093862083noreply@blogger.comtag:blogger.com,1999:blog-1995645300335467747.post-77161472892600913042009-04-07T11:00:00.000-05:002009-04-07T11:00:00.000-05:00Hi Steve Hi BR,Steve your reasoning sounds very go...Hi Steve Hi BR,<BR/><BR/>Steve your reasoning sounds very good, hope the docs will tr y your suggestion.<BR/><BR/>Hoping for pain relief for you BR.<BR/><BR/>Thinking about you both.<BR/><BR/>Love,<BR/><BR/>HerradHerradhttps://www.blogger.com/profile/13728207969811635579noreply@blogger.comtag:blogger.com,1999:blog-1995645300335467747.post-54055612682389051512009-04-07T10:35:00.000-05:002009-04-07T10:35:00.000-05:00In this case, I explained my concerns about lead p...In this case, I explained my concerns about lead placement to both the neurologist and the pain doctor who performed the procedure. The pain doctor agreed that a cervical placement might be necessary, and even scheduled the procedure to be performed the same day if he couldn't get good coverage from the lumbar placement.<BR/><BR/>On the way out after the procedure, he told me that he got good coverage from the lumbar procedure, and that the cervical procedure wasn't necessary. Unfortunately, coverage means any sensation over the affected area, and not effective pain control.stevehttps://www.blogger.com/profile/18134766859291227041noreply@blogger.comtag:blogger.com,1999:blog-1995645300335467747.post-39230633431504608762009-04-07T10:24:00.000-05:002009-04-07T10:24:00.000-05:00Steve, what has been the reaction when you share y...Steve, what has been the reaction when you share your research with BR's care team? Are they generally receptive to your findings, or are they dismissive because you're not the supposed expert on the subject? Is there a way to get them to really listen to you? As Susanne said, your ability to make sense of the research is impressive, and you sound more and more like an expert on MS. Do they take you seriously? If not, can you address that in some way? Is there a patient advocate at any of the clinics/hospitals? Perhaps that person could support your efforts.Kimhttps://www.blogger.com/profile/08742904223093862083noreply@blogger.comtag:blogger.com,1999:blog-1995645300335467747.post-18150007143986777592009-04-07T09:10:00.000-05:002009-04-07T09:10:00.000-05:00Steve, I'm not a doctor either...but for a "lay pe...Steve, I'm not a doctor either...but for a "lay person", your understanding of the medical vocabulary is quite something. And I suspect your engineering / computer background lends a good understanding of the similarities of neural pathways and electrical currents.<BR/><BR/>I would tend to agree with your assessment of the treatment, based on your understanding of it, and would further suggest possibly relaying your thoughts and concerns to BR's doctor. As my mother would have said, (rather simply, I admit)... "The worst they can do is tell you no...they can't eat you."<BR/><BR/>Either way, I'll keep you in my prayers that you find some resolution to this...and soon.<BR/><BR/>SusanneAnonymousnoreply@blogger.com