Hi Mike. Your headache on the right side of your head thet you mention, has that been since the procedure took place or come on recently? Has the intensity worsened, gotten better or remained the same? Just trying to see what my future may have in store for me. Regarding libido, the odd part is that in the buildup to my bleed, during the mania that proceeded it for months prior, it was supercharged to the point of me being a pest to my wife. The building pressure must have been pushing all the right buttons, but alas, that balloon popped along with the bleed and initial surgery. Who knows, maybe that new AVM branch that has begun re-inflating will once again start pushing the right buttons. Trying to look on the bright side
Glad things seem to be on the right path for you Mike, with headaches that at least sound like manageable.
I rarely get headaches at all - even less after my embolization. Itâs like some sort of a ghost pain that rolls in, feeling similar to the headache I had right before I had my hemorrhage
And, yeah - ever since coming home, I just been âhornierâ - especially at first. I just formed my own opinion that it was from the blood flow change.
Thatâs the condition, yes. I had intended to write that but I think a combination of autocorrect, my foggy brain and currently awful eyesight contributed to that error.
So, my much awaited phone appointment was with the neurosurgeon this afternoon and was a little more eventful than the followup after the first embolization. It started with him asking me how I felt and me explaining some of the lasting (and some new) effects I am feeling. I explained that I am starting to feel a mild version of the symptoms I was feeling in the weeks before my first bleed; getting manic, getting uncharacteristically sweaty, rapid thoughts etc. He at least got the sense from me that it is dragging down my quality of life and so we went on to what is to follow.
He said he is going to schedule me in for round 3 embolization at the 5 months mark from my last. I asked about radiation and he said that oncologists are steering away from radiating these days and are reluctant. I again pointed to this being a burden I am just not willing to live with. He then brought up micro surgery and that he is going to put further investigation into this being my ultimate treatment. I take this as an indication that our shoddy health care system doesnât have the resources to put me in the line up. I asked him what his ideal time for radiation after my next embolization and the answer was, within 3 months. Either way, I made it clear that I was not wanting to proceed the remainder of my life looking over my shoulder for the ice pick, or holding back on my love of fitness.
Before ending the conversation, I mentioned that I have an appointment coming up with the neurologist who attended my last procedure and who prescribed me the Vimpat. He said that was wise. I told him I had almost stopped taking the Vimpat days after beginning it due to the side effects, but chose to continue. He again said wise move and we discussed that the prescribing doctor did so after reviewing my full symptoms, not just the talk of seizures. SoâŚthis is taking an interesting change of direction; one that I did not quite expect.
I sometimes think that there is as much scariness in going to America and having decisions and surgery done almost immediately as there is in countries like Canada and the UK where the approach by docs seems to be not to earn as much money as possible from each patient but perhaps to spend as little money on each patient as possible and with no apparent urgency! Somewhere in the middle there is a great balance.
It sounds like you got well looked after by both neurosurgeons, if the pace of work feels a bit slow.
Thanks Dick. I mistyped, as the other doc is a neurologist, not neurosurgeon. I am with you with the sweet spot being some place in the middle and am thinking of sending my info down to the Mayo clinic and see if they can at least review it. Not willing to drop a few hundred thousand for the operation, but would certainly consider paying something for their review and advice. I donât mind the waiting (did I just say that) but what I would not be pleased with is if my treatment plan is now being based on what resources are available over what is best for my health. There has definately been a 180 on the talk about radiation vs. micro surgery.
Hello all. It has been a pretty bad last few days for me, with the pattern appearing to be repeating itself; all the symptoms are coming back one by one (by three if you count the 3 focal seizures I had at the office today. My headache, other than right after the rupture, has never felt this bad and focused around my AVM site. I was the only one among my colleagues at the office today, able to do a specific required function and skipped lunch and worked a few hours late. Despite knowing I should stop and go home I had to persevere but took on too much. By the last few hours of the day I was repeating the same steps over and over anytime I was sidetracked by 20 seconds. I had to ask one of my coworkers doing other tasks to take over as I was not able to get past my mind block. I got quite emotional to see myself get to such an incapable position, at a job I have been doing for 24 years now .
When I got home, Iwent for a long bike ride to get some fresh air and come home completely rejuvenated, both in my mood and my brain fog. There is no question that for me, my brain gets a boost from the cardio. Have to make sure to balance with the risks of course.
Did you manage the bike ride? I was rather thinking that while I understand the liberation of cycling, you donât sound well enough. Not knowing anything or being any kind of expert, it does sound like a check-up at the doc is appropriate
Thanks Dick. I am balancing the risks of another bleed with a need for working on my mental health. This episode has left me in tougher mental shape than I had already been in and feeling like a shell of myself. The rides are the only thing that still seems to have a neural connection to my happy processing centre; my rewards centre is malfunctioning and pretty much the full deficit I have from my AVM rupture. I brought it up with the neurologist prescribing me the Vimpat that I was excercising, but listening to my body in the process.The most frustrating part is that I appear normal to everyone around me but feel anything but normal. I imagine that will change once I am sporting a large craniotomy scar.
Thanks again for the feedback as I consider it all.
Chris
