Hi all! Haven't been on much. Had a tough past 4 wks. Was in 7 days for decompression, removed a bone that was anitomically not supposed to be there, craniectomy and swollen tissue removed that was on either side of my spine putting pressure on the nerves to my shoulders. Surgery was very painful!! Couldn't find meds to ease my pain. Apparently I'm very sensitive to pain meds. I never used them prior to surgery. ecovery in hsp was a nightmare. Insensitive, uncaring!! Eyes were swollen, face too, barely could open my mouth. The morphine came up seconds after it was administered. Nothing else to give me for hours!!! I didn't yell or scream, I just laid there helpless!! I have cerebral pressure so bad it feels as if my temples will pop off!! The pressure feels like almost constant motion sickness. I have nausea everyday and have vomited several times. My NS tells me this is normal. That the pressure can go on for wks to months. I'm miserable. I've had inhome care with a nurse and phys. therapy. After this wk, I have to start outpatient PT. My depth perception is off. I can see ahead just fine while walking, but looking down isn't fun. My fatigue is immense. Some days are better than others. The headaches come and go. I'm only on 600mg of Motrin and Tylenol. The heavy stuff just comes up, too much on the tummy.
I am scared!! I have never felt like this in my life. Everyone tells me I'm being too hard on myself. I am tough on ME!! I just want so badly to feel some semblance of normalcy. I try not to baby myself too much and I do try to accomplish things in the house. Just writing this is tough. I'll need to lay down after this. Anyone else on here feel or has felt these after effects?? I need some help and advice. Thank you for reading and listening.
Wow! I can't help as I haven't had surgery yet but I wanted to let you know that I am so sorry you are going through this. I, too, cannot take narcotics and have to stick with Aleve or Excedrine Migraine which I know are sometimes no help at all. I wish there was something I could do for you.
Sorry to hear this Christine!!!((((hugs))))
I haven’t had surgery yet so I’m not much help there. Just know I’m thinking if you and hope you get some sort of normal feeling soon.
Very, very sorry to hear of your situation. I hope you start to feel better, even if it is just a little each day. I must admit, makes me a little nervous for my own time to come. We are all thinking of you. Hang in there and give yourself permission to rest.
So sorry you are going through such a hard time..It brings back memories for me..I had my Decompression done 3 yrs ago...
My NS told me that it would take some time for my body to adjust to the new CSF flow....I would get dizzy easily , ect...
It does get better....I hate this saying..but it is so true..."Time takes Time"......You are a "FRESH POST-OP" in my humble opinion...be kinder to yourself.....you just had a major operation...only 4 weeks ago....trust me... when you over do you will pay later...
Thank you everyone. I do need to "be kinder" to myself and I know this was a seriously big surgery. Just very disheartening when everyday I have that awful pressure in my head. Today was temple pain and alot of eye pressure. I just want to have a day here and there feeling somewhat ok. I'd settle for that right now!! :)
For those of you who have not had the surgery yet, please do not, I repeat, do not, be discouraged by my experience. This is MY EXPERIENCE. This isn't necessarily going to happen to you. Everyone is different. This surgery has helped alot of us Chiarians. It's the only solution really that is available at present. I hope in the end, it has helped me too. I have no regret what so ever for having the surgery. It was definitely warranted, especially when they were actually in there. I now have to allow myself to heal physically and mentally. I'm a tough girl and this tough girl has been beaten down but now out!!
Thanks again for listening and lending some good advice and kind words.
