Since the first coil and stint in 2010, following a car accident, and the discovery of a mirror aneurysm in 2017, I am still here. I have been blessed with seeing my family grow to nine grandchildren! I am so thankful for this. My wide opening aneurysm was discovered at an out of state hospital, and fixed in an out of state hospital. My follow-up care has all been done in the state I am living in, WV, (my balance was off, a lot of neuro issues) that did not catch this first annie ,for several months following the car accident, so it makes me nervous to do continued follow-up care for 2 annieās in WV. I think this condition makes a person on edge, almost PTSD, sometimes. At least this is how I feel.
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It definitely can make you on edge. I have a slightly different condition but again with the risk of a brain bleed and I found myself hypervigilant to all the little oddnesses in my head ā a feeling of dizziness in my case, or odd noises and so on ā but in my follow up scans the neuro team told me that there was nothing visible ā nothing physiologically amiss. I was able to bring myself to believe them and to put my degradation pre op and recovery post op behind me several years ago. It is very difficult if you find yourself much less able to let go.
Keep on keeping on! Thereās nothing better than just keeping on!
Richard
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Iām a big believer in listening to our feelings. I also know many of our members have PTSD whether they ruptured or not. Certainly vehicular accidents can cause PTSD. For me, I always ask why my feelings are leaning one way or another at least on good brain days I do. Many times feelings are based on experience , so to me it sounds as if you donāt think the specialist is listening to you or addressing your concerns. That sucks if Iām right.
After I ruptured and the subsequent release from hospital, we became frequent flyers to Baptist where my Neurosurgeon is located. I loved Mr. William her PA but he wasnāt working with her after about a year and she was assigned a NP when WFBH hired a new CMO. That NP wasnāt the best for me. Was having serious Neuro issues, called triage and one of the RNs who knew me became very concerned and tried to get me in with L. L blew me off. She always blew me off, even in front of my neurosurgeon. I finally had to call the front desk and ask for an appointment with my neurosurgeon telling them āI no play with āLā no moreā. Already having an appointment scheduled earlier than they could find another appointment, the lady at the front desk who was also concerned said she needed to talk to my doc and would call back ASAP. I had a new appointment within 15 minutes with a NP who worked with another neurosurgeon. The appointment went great, I wasnāt doing well but she gave me lots of good suggestions and even wrote down my ārulesā I couldnāt remember. 3 weeks later got my MRI prior to my appointment, saw my doc, got scheduled for an angiogram the following week and that lead to repair attempt 3. All of this just to say itās really important to have a healthcare professional listen and observe. If we donāt feel like theyāre listening and acknowledging, it then becomes our responsibility to let them know.
Another thing Iāve experienced is more of a what the heck kinda thing. It happened when I didnāt have to go so often. We went from every 2-3 weeks then monthly, until Iām at where I am now, which I think is every couple of years for my imaging because my neck hasnāt completely occluded and Iāve got that adenoma growing. I havenāt seen my Neurosurgeon since my last diagnostic angiogram to see if the stent was holding up. I can no longer have them because of my reaction to the dye last time. Per my surgeon it will be only to save my life so we rely on the MRI/As to tell her what she needs to know. Iām happy with that decision, I really would rather not go into that severe of an anaphylactic state. I thank God, my lucky stars and RN Chip who taught me how to do relaxation breathing back in the late ā70ās. It saved my life since the RNA didnāt have everything she needed as she was supposed to despite my telling her. I insisted my NP put it all over my chart so as not to be ignored if I ever have to have both shots again. Interestingly Medical Records cannot find the anesthesia report, funny how things like that happen. I should have had my health insurance get it, but right or wrong, I thought the hospital would take my neurosurgeon away from me. I really donāt want another neurosurgeon.
My Neurosurgeon doesnāt follow my Neuro issues for the most part, itās the Neurologistās job. Iāve never met the one they have now where I go, I work with the NP and couldnāt be happier. If I get a lot of bad brain days, I can see him anytime, he works me in. He messes up my MR schedules since he usually orders them and then tells me to let Dr.Q-W look them over.
. Thatās fine since I donāt trust the Radiology group who I assume is subcontracted with my local hospital. Fortunately I have this group who can explain things that some have said. Iāve had so many done that I think I know what I should be seeing in the findings. But when they say something I donāt understand or donāt say something that I think they should be stating, Iāve gotten my answers here. Yes, I do verify them with my Neurosurgeonās team and theyāve been spot on 99% of the time!
I suggest you write a list of what you need from your team. We can help you with that if you let us know. Another thing Iād suggest is practicing relaxation breathing thereās lots of different types, we currently have a member who is sharing YouTube videos, just look up @FinWhaleFan and replies made will come up. If youāve been reading topics, you already know I personally think we should all practice it and why. You may need a neurologist if you donāt have one as they specialize in the after effects I guess one could call them, we get after brain surgery. Neurosurgery is just to fix it and thatās what they do. Seems many members get more help from the Neurologist on the after effects.
Couple of questions if I may, how often are you getting scanned? Is the aneurysm you had surgery on occluded? Occlusion of our aneurysms is what we like to hear as the blood is no longer flowing into it. I donāt have that luxury so Iām scanned every couple of years. Are you going in with a list of questions to your appointments or are you sending them in prior to the appointment so the team can review before you see them? My NP taught me to do that as it makes my appointments faster with her. I donāt do it with the Neurology appointments. Both allow me to ask anything that comes to mind whenever I want.
Thereās also the issue of trust isnāt there? I have trusted my team since I ruptured. I may have over trusted them if Iām honest about it. When I went into severe anaphylaxis things changed when I read my findings on the angiogram and went off like a banshee. For the first time, the findings went on and on about the RN Anesthetist and how great and experienced she was. WTHeck? I called bullshit on it and actually sent that exact phrase to my Neurosurgeon with factual information to back it up. I also demanded it be taken out of the report since theyād never mentioned the RNA at any other angiogram it was removed but I felt like they circled the wagons on me. That led to my loss of trust with both my Neurosurgeon and her NP. BH is helping me get it back even though I no longer have the amount of contact I used to have. Still, it will never be the same, theyāve got knocked down off the pedestal I put on them and realized they are human after all. They didnāt ask to be put on it, so thatās on me. When we put a health care professional on a pedestal because they saved our lives, itās harder for other professionals to rise to that level. I think itās best we not put people on pedestals, just accept them for what they are - human, some more gifted than others, but all with human frailties. That being said, you alternative may be to find a new team, it depends on why you arenāt trusting the ones you have now.
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