Decompression surgery recovery help

[Devmom3]

I am eight weeks post op tomorrow and am really struggling. I still have help at home during the day from my family to care for my children. I can't take care of my baby. I have been able to get her dressed in the morning and change her diaper. I have progressed to feeding her a bottle but I can only handle one feeding a day, two maybe. I can play with her and hold her, pick her up. The doctors have told me not to walk with her because my coordination and balance is still off. One of the biggest issues I have that my "nerve attacks" (as I call them) have progressed from intense pain to temporary paralysis. I can't move for and hour or so. Depending on the attack it will usually be the left side of my body, but at least once a week or so it is both my arms and legs and has once included my face. I am used to be numb all over but not used to not being able to move. This is new. They told me to expect my brain to freak out but that it would calm down after a while but it's getting worse. My husband has to drag me to bed some nights when it happens halfway through the hall. I used to be able to catch it and sit down, but it's happening faster now and I can't get down fast enough sometimes. They increased my topamax and that has helped with the pain a bit. Now I can actually be touched when the pain starts without screaming bloody murder. Did this happen to anyone else?

Also, as I am more active and doing things with my kids and baby and house and such- my muscle pain has become intense. My shoulders and neck have turned to rocks. I have always had problems with my muscles here growing up. I carry tension here a lot so having this surgery here did me no favors. I am taking Tylenol and ibprophen and the Oxi and flexeril and magnesium. I put heat and ice on it. I don't know what else to do. I was barely taking any rx pain killers a few weeks ago and ever since I increased my activity I had to up my dose. They said I would but I didn't want to. Is there anything you guys did to help that I haven't done?

[selmaS]

  It  may   mean  another surgery to close   a leak,or replace  a  failed dura patch....hard  to know for sure.....

Keep  us posted  ...Good Luck  Monday <3

[Devmom3]

Well the symptoms progressed to my face yesterday worse than ever before. I couldn't smile correctly or make some other facial expressions. I also lost the ability to taste sugar for a good portion of the day. When it happened I also got the same symptoms I would before I passed out before surgery. My headaches have returned but there isn't a skull to push against back there anymore so I have been concerned. So we called my neurosurgeon. They told us to go to the ER and get an MRI. I have a pocket of fluid built up. My neurosurgeon said he would look over the films and then discuss with me what we needed to do on Monday. Does this usually mean surgery again?

[selmaS]

The less pain  meds you take,the more likely you will have other pains  you did  not notice b4....and this is the time frame to have  those pains start up.

Each of us is different as to what,and when these pains start.,....and end,,,

But you said you feel worse...and even with a return of some pain you should not feel worse...so do talk with your Drs,

What is "normal" for  one  may not be for  another....I did have pain  at the skull where bone was removed,,,,,,not saying it is everyone's "normal".

[Devmom3]

I got the strength in my hand back back after surgery, that hasn't left, high blood pressure I usually only got while pregnant, and I am no longer passing out. Those are the only symptoms (passing out every day multiple times, high blood pressure, and the complete uselessness of my left hand) that have not come back. Everything came back within two to three weeks. But the surgery was worth it to get my hand back and to stop dropping on the floor every hour. I now have a walker in the house so I can get to the bathroom when my husband isn't around and only one leg is unusable. My follow up appointment is in a couple weeks, but the pain is getting really bad. This is on a level I have never experienced before. They are aware of it and wanted to increase the topamax. But it wasn't anywhere near this bad when I saw them a month ago.
Also, is it normal for the skull to hurt a lot where they removed the piece? It hurts a lot. I know it's healing but I still have to put ice on it every day because I get so much pressure on it.

[Elisaandbucky]

I feel compassion for you as a mother in the midst of coping with this disorder that plagues so many of us. You are a caring mother in your efforts to be with your children and be active with them. Selma is wise in urging you to be cautious not to engage in too much strenuous activity. Even if you can only feed your baby her bottle once a day, know that she knows how special it is when her mother feeds her. Feel at peace with that.

[selmaS]

  Usually around 3 months post op we have a return of some symptoms...they should not be new or feel worse then b4 surgery.....

You may be doing too much too soon....lo lifting, pulling, pushing etc....

Walk...and swim if you have access to a pool with someone to make sure you are ok...but these attacks need to be addressed by your Dr.

Listen to your body if it screams after you do more, cut back..do less...only your body can tell you what you are able to do....no dr, or even us.....