We had a lot to discuss today regarding head pain, arm swelling, whether or not to stay on xarelto, which meds to take now, etc.
1) regarding her thoughts on Xarelto: She spoke to the neuro-surgeons (same group, not necessarily same docs, that performed my original surgeries) to see what their thoughts are regarding whether or not I should remain on Xarelto (or any anti-coagulant) and they thought [i’m paraphrasing] “I should discontinue, if bloodtests confirm the lupus anticoagulant has dissipated AND the hematologist recommends getting off.” I think she has the same concerns as I do about the Xarelto making the lupus anti-coagulant test unreliable. I said that I am willing to “do the shots in the stomach again if needed, to preform that test again.” FYI, the neuro-surgeons basically said that if the clot didn’t clear after 6mo, it was not likely to ever clear. The only reason to continue taking the anti-coagulant is for the lupus-anticoagulant disorder but if there is no sign of that… then Xarelto would NOT be a choice to take.
2) regarding the random crazy head pain: I’ve tracked this on/off. I’ve chatted w/ many of you on/off and had many excellent suggestions/ideas. She thinks maybe the severe pain is more migraine related, not clot related. I don’t disagree, except that doesn’t explain the crazy swelling and cold my arm does. So, let’s remove that and discuss later. Assuming that the clot is causing some blockages that do create some pressure affected by weather. And weather can be a severe migraine trigger. we are going to proceed as if I am having severe migraines. I feel like I’ve come full circle 😉 I used to get these as a kid! So right now, we are gonna keep me on the same meds but increase the dosage just a little, see what happens. [oh wait… somewhere in here between appointments, I STOPPED taking the extended release (XR) version… THAT was a VERY BAD combination. so I’ve just been taking regular topiramate] Last time I increased the dosage, I couldn’t tolerate it and we tried an XR. We are just trying to get a baseline again… I think. If this doesn’t work, there are other migraine meds to try. [last weather episode]
2b) there is a possible other migraine trigger here that could be hormonal cuz I’m not a spring chick anymore 😉 But I still clearly have issues. I’ll be attempting to track all my head pain days & symptoms just in case it’s not just the weather!
3) regarding the crazy “white & cold” arm thing and severe swelling in my neck: no one knows what this is. The MRI’s show that my jugular is still blocked so clearly the blood is going out the back of my head somehow and this has to be related. SOOOO… if/when this ever happens again, I am to proceed to the nearest ER and get an ultrasound of my head/neck/arm WHILE this is going on, so maybe we can get some more information. [this is of course, going with the assumption that that bullet point #2 is migraine induced pain from weather]
previous doctor visits: http://blog.scottsontherocks.com/blog/2016/04/13/doctors-visits-041116-041316/
more random information regarding these latest appointments:
notes of the data I have: I have lots of lists of just about everything but they are not all necessarily combined. I have had many of these “notes” and “apps” since my Palm days, so longterm data 😉 Yes, some of the apps merge with the Apple HealthData App but not all and some are just my own notes or “things” I created. So I will just start doing it all manually, probably into the Apple Health app just to have a central place. I “have the data”… just getting it together is cumbersome 😉 if ya’ll have any app suggestions… I’m all ears.
notes on the neuro: She’s been late, like TODAY, but it’s not the first time and when I’ve asked before if she’s been making rounds, she’s laughed and made comments like, “no I was helping my daughter.” she should’ve lied to me. She’s cancelled. It’s a PAIN to call the office, let me count the ways! and I just don’t think “we click” and I’ve felt this way since “day 1” and I’ve always said that a lot about going to a doctor is just personality. This does NOT make her a bad doctor, she did go to school 😉 she does have a degree hanging on her wall and she does call specialists, so I do trust her judgement. To a point. I’m kinda getting “irritated” that she has been suggesting “the cold thing my arm does” might be anxiety. I finally was like “look, I was asleep! I woke up because I had this cold, ash-white slab of meat lying next to me that I cannot shake off and my neck is swollen like a baby turtle is sitting on it. Please explain to me how I am suddenly having “anxiety” IN MY SLEEP causing these symptoms, that a HOT shower cannot resolve?” [Ya know, I’ve always heard that it’s usually male doctors telling women it’s anxiety…?! I’ve never in my life had a doctor suggest that “it’s me”?! even when I’ll be the first to admit I thought I was being a hypochondriac! and I’ve never been diagnosed with anxiety before. I’m not saying that having a brain clot can’t suddenly cause anxiety but ya know what… that still doesn’t answer my question above….?! so I’m all for getting your recommendations for other neurosurgeons]
notes on the hematologist: he seems ok but SUPER busy. he’s a spceialist for cancer patients, so ALL of his patients are the tricky ones that require extra effort… including me. Only “I” am not on a ticking-clock and I have told him so. I have told him that if he needs to take a call during my appointment… or whatever… to just go right ahead and do it. At first, I felt like he really didn’t know what to do with me. The OTHER hematologist KNEW what to do with me, but he left. He had also suggested getting me off of Xarelto at some point and he had mentioned that the Lupus anticoagulant could suddonly disappear just like it appeared. SOOO, now that this doctor is suggesting I get off Xarelto, it’s not a surprise, I just want to be thorough. Maybe doing the shots in stomach is UNnecceary… any suggestions from ya’ll would be welcome. THIS hematologist has been frustrated that my current neurologist has not returned ANY of his calls. I asked him for a recceomendation and he gave me one. He also thinks its an excellent idea that I should get a second opinion. I told him I was frustrated as well and talk about this and he assured me that anxiety is NOT the cause and kinda pleaded with me to get a second opinion because she NEVER returns his calls.
on the “cold slab of meat lying next to me” comment… I hear ya… and NO… ;-P
[NOTE UPDATE: UGH… GRRR… SOOO, after my neuro appointment this morning, I discovered that the recommendation that the hematologist gave me is one that SHE has talked to and I think may have been on the “team” that she was talking to above. I’m waiting to hear back from that office to see if it’s the same group. There are pros and cons to that situation. I’m not sure which is better… I did get another recommendation from one of my other doctors as well….]
More neuro: http://blog.scottsontherocks.com/blog/2016/06/15/cancelled-neuro-appoinment/