I was diagnosed with CM this past November with a 10mm herniation. I finally met my NS on Jan 22. When I initally spoke to him he said he would only suggest surgery about 50/50 until my husband reminded me to give him what my eye doctor asked me to give him. A week prior I had gone to the eye doctor for my normal annual exam and he had noticed slight increased pressure on my eyes so he put it in my records and told me to bring it to my surgeon when I went. So I showed it to Dr. Adamson (my surgeon) at Duke VA in NC. When he read the results from my eye doctor he wanted to do a spinal tap to see how much pressure I had on my brain since he said he also saw some increased pressure in the MRI but it was hard to tell how much through the imagry. So after he did the spinal tap he explained to me that normal people have about 10-20 pressure on their brain and I had 30. With this he was very concerned, especially with it putting pressure on my eyes the way it was. (What is funny that day I only had a slight headache, I wonder what the pressure would have been with a full blown migraine) So after the spinal tap he was highly recommending me for a suboccipital craniectomy (I think I spelled that right).
My surgery date is April 11th. So can anyone help me with what to expect after surgery? Will I have a problem walking/balancing or anything like that? I honestly have no idea. How soon can I try to take on things around the house? I don't like to sit around for to long.
I plan on trying to go back to work after 2-3 weeks or so but only working half days in the beginning. I work on a computer 90% of the time so I don't think it should be a problem and my NS said as long as I felt up to it he was fine with my trying. My family thinks I'm crazy, am I? Any input would help. Thank you!
Tkelly, I had no new symptoms post op, except for dizziness from the pain meds. I know you are worried about being able to walk, and I would say if you dont have issues with that going in, you probably won’t have them coming out. I don’t think returning to wrk after two weeks is a good idea- too much too fast. The healing process for this operation is NOT “push through” and get better faster- that will actually hinder progress. My friend, you are going to have to spend a lot of time laying around. Best wishes!
Thanks Abby! Some of those made me laugh! lol That really does help! I even had my husband read it over so he would know what to help with/expect. I really appriciate it :)
Abby said:
Here is Beeba's List, and believe me, she knows. Sending you hugs and well wishes. Keep us updated and let us know when you can, how your doing.
Beeba's List Home (after surgery)
My surgical routine - and yes sadly I have one. 1. Check into stores grocery delivery services. Many like giant(peapod), and Safeway have them. It is a great way to feel you are still contributing yet it is all done with just a few clicks and takes just minutes. They deliver right to your kitchen and it is a minimal charge.
2. Clean. Mostly organize things. And show husband how to wash the sheets. You will want to come home to a nice fresh smelling bed. Have extra pillows of all textures for propping.
3. Buy a cheap little trash can ($3) line it with two plastic shopping bags. Hopefully you will never need it but with pain meds it can hit fast and hard and it is good to move around with it. And definitely have it for ride from the hospital. Better to have and not need than need and not have.
4. A heating pad. Squishy ice packs at least 2 to rotate.
5.make sure school knows what is going on and to bump spouse to the "emergency contact" teachers need to know what is happening in their kids. Also you want to feel comfortable being able to turn your phone off - moms just don't like doing this!! But you have to or people call to check on you and end up just waking you
6. Be aware that pain meds really mess with your sleep cycle. You live on a 24 hour cycle instead of the normal 16 awake 8 asleep. So ya just gotta go with it. But when you are up at 3 am - I do like to warn people - infomercial all of a sudden make perfect sense. This is a financial warning!! Lol. Cindy Crawford looks that good from good genes, no pillow will really make your head feel better and carol Burnett is very funny but you don't need a years worth of videos that when you are better you will never have time to watch. And just because these really are the only people happy to talk to you at 3 am - they are not your friend!!! (My husband said I was the only person he knew that could spend money from icu- but everyday was like Christmas!!)
7. There is a pill app or the old fashioned pen and paper. Use them. Write down exactly what you took and when. As much as you think you will remember - you won't. You don't want to miss a dose or even worse overdose. Document it while the pill is in your hand and going down the hatch. Something as simple as a phone ringing can throw you. You will have the attention span of a 2 year old - squirrel!!
8. Limit visitors. You just need to sleep and you don't want the pressure of entertaining other. Despite their good intentions - people come over and you turn into a hostess.
9, for showers - have someone within ear shot. You should be fine - but an ounce of caution. Showers can cause a bit if dizziness
10. Have your sick food on hand. Popsicles,soup and ginger ale.
11. I was allowed to shower at hospital - bring your things.
12. Get hair trimmed and comfortable - you won't want to do it later.
13. Definitely ear phones - if you can download some shows do it. Hospital tv stinks - especially on the weekend. I learned how to breast feed again about a 100 times. My 12 and 8 year old were not thrilled. I finally fell in love with the sopranos on 7 years after the show ended. But I did feel the urge to 'whack" my rude roomie.
14. As soon as you do your last talk with anesthesia - ask for the relaxing medicine before surgery. Never been denied and makes those last few minutes more enjoyable and less likely you will jump off the table and run out butt exposed.
15. Know that right up to the last second - if you want out - you have free will. Keeping that control in mind allows you some feeling of comfort. In your head you will cancel all the way to the hospital - that is normal - but I have yet to hear anyone on the table actually say - get me out. But know you can. Screwing up your surgeon, the hospital or anything else is not your problem. You won't do this but I liked knowing I could.
16. Rest, rest, rest!!
17.do trial runs with the kids. Like pick ups, drop offs and after school sports and such so you can relax and not get that call because someone can't find your kid who gets dropped at one end of school but picked up at the other end. You don't need that anxiety.
18. Let the kids help. They can always lay in bed next to you and babble about day and do homework. Go easy in the parent guilt. You are doing what is needed to be a good parent. You are showing strength and courage.
19. Warm socks with grips in the bottom. You get some crappy ones from the hospital - nice ones are better.
Thank you for replying. The main problems I have walking right now is my feet (and hands) tend to tingle a lot (like they are asleep) so that can tend to cause problems walking but I am hoping the surgery will help with this. So if that's the case I hope I won't have any problems walking then :) Yay! I guess my main issues are indepenance. I really don't like depending on someone else for anything. As I said I hate sitting around doing nothing so this really may be a struggle for me, lol. Oh well, I will figure out a happy medium :) I found out recently my work is planning on sending me work so I can do some "work from home" so I can have more time off without having to worry about going without pay for too long! I am really thankful for where I am working :) So maybe I won't have to go back so early. Thank you very much for the advice!
Tonya
jcdemar said:
Tkelly, I had no new symptoms post op, except for dizziness from the pain meds. I know you are worried about being able to walk, and I would say if you dont have issues with that going in, you probably won't have them coming out. I don't think returning to wrk after two weeks is a good idea- too much too fast. The healing process for this operation is NOT "push through" and get better faster- that will actually hinder progress. My friend, you are going to have to spend a lot of time laying around. Best wishes!
I had no trouble walking around post-op. I actually had a really easy recovery and due to overwhelming fatigue did not return to work until 8 weeks post-op. I felt decent and the pain was very tolerable yet I was so tired. Healing really takes a lot out of you. When I did return to work I found I would get spasms in my neck muscles because they were so weakened from surgery so I did have to take it slow and lay my head on the back of my chair and rest it frequently. My doctor said no driving, no housework, no bending over, and no lifting over 5 lbs. for the first 6 weeks. You really want to be careful even if you feel good because too much activity can lead to complications like csf leaks and such!
Thank you very much for the advice! I hope I don’t need 8 weeks because I will only have about a month of leave built up and they said they will have 2 weeks worth of work I can do at home and that doesn’t include check up appointments. I will just play it by ear and see how it goes I guess. Thank you again!
Anglyn said:
I had no trouble walking around post-op. I actually had a really easy recovery and due to overwhelming fatigue did not return to work until 8 weeks post-op. I felt decent and the pain was very tolerable yet I was so tired. Healing really takes a lot out of you. When I did return to work I found I would get spasms in my neck muscles because they were so weakened from surgery so I did have to take it slow and lay my head on the back of my chair and rest it frequently. My doctor said no driving, no housework, no bending over, and no lifting over 5 lbs. for the first 6 weeks. You really want to be careful even if you feel good because too much activity can lead to complications like csf leaks and such!
Update Post-op: I'm doing pretty good after surgery. The only complication from surgery was apparently my eyes weren't taped completely and they got Betadine in them, especially my right. They chemically burned my cornia but good thing is it isn't in my line of sight but it is still healing and red a week and a half later. They did have to remove a little more of my skull than they expected and they had to file down my C1 vertibrae some for more room, they said they were surprised on how tight everything was once they were in. I was in ICU overnight and came home the next day. Since I have a high tolerance to pain I have been doing pretty well over all. My worst day was yesterday when I got another one of my headaches that I would get prior to surgery. My incision seems to be healing well, I will find out for sure this afternoon when I go in to get my stitches removed. The one thing I noticed right away that has not come back is the tingling in my hands and feet. I hope the headaches go away completely once I heal completely but we will see on that. I have been driving my husband crazy because I am constantly trying to do things around the house, only because I am going stir crazy, lol. Thank you everyone for the advise prior to my surgery!
Tkelly, so glad you are on the mend. Not excited to hear about your poor corneas, yikes! For me the Chiari headache took some time after surgery, the pain slowly changed to different areas of my head before dissipating. Give it plenty of time, it’s normal to continue to have the same symptoms for awhile.
It is good to hear it is normal to still get the headaches for a little while after. I wasn’t sure if it would be considered a success because I still got them. Thank you. I will let you all know what the Dr says today. Hopefully all good things!