Okkk in less than a week I wil have my suurgery… Question how things are gonna be that first day? Am I gonna be awake? Able to idk listen to music, watch tv? Greys anatomy is that day and im a fan of the show. Could i watch it? Ahah lame and stupid question butnI wanna know of at least I could do normal things that night. Thanx
Hi Glory I wish you luck and have no complication at all, can you please come back to us to feed us back how are you getting on after surgery please...AS I am waiting for my OP..just like you I am so worry....
Good luck to you too!! I wish you the best. Faith above all. Xoxo
Good luck with your surgery, Glory. I believe it’s in next day or so… And remember it won’t be long before you will be back playing and cuddling with that puppy of yours.
Good Luck with your surgery give us a feed back, how are you getting on..
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.
Thank you for sharing with us..you are so brave and God bless you also am glad that you are now OK, so are you going back to College/SchoolUni?...are you still on medication..I am also pleased to hear that you have done the right decision by doing the surgery, however when you said you have pain some time now and then..in scale to 1 -10 (10 will be the worst) waht would you say? before and after surgery?..would that effecting your quality of life?
Praying for a successful surgery for you. By now you’re probably feeling crappy but hopefully one day you can give us an update.
Hi Glory4, I'm almost 4 weeks post opt, the day after i was awake in alot of pain and didnt care about tv, food. I could'nt get comfy, still can't. My heads fells like it was put into a trash can and rolled down a hill. I just got caught up on Greys. Just focus on getting better, sleep and take meds on time. I was having problems with sounds before surgry and still do. I wnet on amazon and got a big pack of ear plugs and keep some with me at all times. wish i had the at the hospital. Good luck, wont lie to you it sucked big time, just remember your not alone. It sad when we wish for brain surgery. let us know how your doing
Hi Glory4! I had my decompression 2 months ago. The first 3-4 days for me was horrible pain. I don’t remember alot from the first day after surgery because of the dose of hard core pain meds I was receiving. I was pretty well knocked out but I would wake up in excruciating pain. But each day the pain was less. Day two I was up n walking on my own. This surgery is no mean to be taken lightly! Here’s a hint take some comfy pj bottoms so when ur up n walking no ones seeing ur behind. It was rough for about 5 weeks for me but now I am 100%! No more pain period!!! I hope you’re surgery goes well and a speedy recovery!
Hi Glory, I hope you are well, it has been over 2 weeks after your surgery, i hope your surgery went well, please give u an update.... how are you?????
Hi!! Well I am alive its been 5 weeks and im hanging there… I feel weird sensations around my tongue at the moment, lips tongue, burning… Hands arms I’m still fighting this battle to be honest.
WELL, AT LEAST ITS OVER NOW, TAKE YOUR TIME, BE PATIENT AND PRAY..TAKE PLENTY OF WATERS DO NOT RUSH......
What pain meds did they have you on immediately after surgery? Do you mind me asking?
Hi How are you getting on now since the surgery..have your surgery successful..are you fully recovery..do you have your quality life back, are you on your medication now...the problem is when they are successful we nver heard from them anymore..we really need to hear their experiences..and give us a hope
Glory4 updated us in this Discussion post: http://www.chiarisupport.org/forum/topics/surgery-3-months-ago?xg_source=activity