I was recently diagnosed cm1. I am 51years old and have had bad headaches all my life. I also have an aneurysm on the basilar tip artery. This all is scaring the daylights out of me. The NS is talking about surgery for the Chiari I just can’t do it now. I am told the aneurysm is inoperable. So many Dr.s in one month. I have been handed off to more surgeons than I can count. Anyone post surgery that can offer some insights?
Thanks, Trecia
Hi, Trecia.
I am just reaching out to offer you my support. I can understand being scared. It’s natural with a decision regarding your health. Have you considered possibly delaying things until you are a little better prepared emotionally? Is this something your doctors may consider also? It doesn’t seem from your post as if not having surgery right away would be life-threatening. I apologize if I have misunderstood. I think it may give you a little time and the emotional space you need to make best decision for yourself and be thoughtful and gather more information. Try reading up here on past discussions involving Chiari I and also check out the Chiari Info tab above if you haven’t yet. Also hopefully others will also share experiences with you.
Best wishes,
Laurie
So a couple of days ago I decided to write my experience of surgery while I still remembered it. SO first thing, the night before we drove up to a hotel in durham and it was really nice. My soccer coach aka my other dad paid for it for us. My aunt surprised me there and we ate there for dinner and they had really good pasta! Anyways the next morning I went to the hospital for as pre op, and I was scared. The lady checked my blood pressure and my temperature and and everything went good until it started getting closer to time. She then had to stick me with an IV and the first time I ‘moved’ and so she had to redo it. My aunt and mom had to hold me down. After she did it I met my anesthesiologist and she was really nice and made me feel relieved because I asked her 1000000 questions about if i would die or not. Then she said she would take amazing care of me and do her best but I could die like in any case but I still trusted her. My surgeon also came in and let me know how much hair he was going to have to shave and how long the cut would be and all those details. After they left the nurse put stuff in my IV to calm me down and the last thing I remember is being rolled into a room with a bunch of doctors I have not met before. I asked if I was going to be okay (Of course I was under medication about this time so I was being loopy) and then it went black. The next thing I remember is being in a place where I was before I had the surgery and I was completely out of it. My mom said every nurse that came to me I would grab her hand and ask if she could put a pillow under my head cause I was so uncomfortable but they all said no because that could mess things up. When they said “no” I would politely say “okay” in a baby voice and would repeat to the next. Then I blacked out again. Sooner I woke up, and I was up. My mom and aunt were there but then my aunt had to leave. I was in excruciating pain. At that time I was okay with dying. I never felt like that before until then. I was in so much pain if dying was an option I would of definitely took it. I couldn't move, and EVERYTHING from my neck up was throbbing. Also from a tube being in my throat to control my breathing, my throat was killing me (it stretched that ball hanging in the back of my throat which from that I can now touch with my tongue) . All the nurses I had were great. They had to come in every hour or so and check everything on me. And that actually opened my eyes to maybe become that when I’m older, but anyways I asked my nurse for something to help my throat pain once and so she gave me a popsicle….. WORST MISTAKE EVER. After I ate it it did not even help and I threw up for an hour. Now Imagine this, Having the back of your neck split open and then vomiting. I dont have the words to describe how horrible that was, once again I wanted to die. I couldn't eat anything the 4 days i was there either. The pain medicine I was on still wasn't enough. I woke up every hour or so at night in pain. I felt disgusting because I couldn't shower. After the surgery and I returned home I had to be homebound from school for a month and I basically was depressed. Yeah I had friends who texted me and came to see me every now and then but me not seeing them everyday and all that definitely impacted my friendship with them. My two best friends I had at the time aren’t even my friends anymore due to drifting. I definitely made some new friends out of it but it wasn’t worth it. Overall my experience with this surgery sucks. I am not the same person I was before it but I definitely think I am a much stronger person and I believe no matter how horrible things get it will always get better. 5 days ago made 6 months since I had this life changing event and I honestly am so proud. My hair is growing back, my scar is healing, my headaches are definitely reduced. If you asked me three months ago if I recommend it, I would of told you heck no. Now, I would say yes. It definitely decreased my pain levels (It doesn't take all the pain away, I still have some every now and then) and gave me a new perspective on things. I definitely think if you're going to have it you should see D. Fuchs at Duke, (if you’re under 18 like me). This is my story and I really hope this helps someone.
Ty Kayla for the insight. I surely hope things are better for you now.
Ty BaltimoreBaby for your kind words. I just found out I also have cardiomyopathy. I am plain ole tired.