hey everyone! So i just been diagnosed with chiari about 2months ago and i do have to have the surgery. I dont want to take any days off of work so im waiting until the summer to have the surgery and because i have all this time to think about it i feel im starting to get nervous, scared just many different emotions i dont really know how to feel i just cant wait to get rid of these terrible head pains i suffer from almost everyday. I was just wondering if anyone who has had the surgery can give me any advice on recovery cause i am 20 years old and i really hope i can still enjoy my summer but my biggest thing is that everything will go well with recovery so if there is any advice to as how i would feel, how painful it is, how uncomfortable i might be just anything ... ?? Please and Thank You :)
Having the surgery was the best decision I have ever made!!! I'm 24 and had my surgery only 5 weeks ago. Like you probably have heard before, everyone reacts differently. For me, the first few days after the surgery were painful, and uncomfortable, but with pain management and rest you will be fine!!! When I came out of surgery and was fully awake, i felt like crap :x but with the pain meds i was able to feel a bit more comfortable. I needed a bit of help moving around and switching positions in bed, but the next day I was up walking around and did much better. When I was finally home, it made all the difference in the world to be in my own bed. It all about taking it easy those first couple weeks.
Some suggestions though,
1: if you have long hair, invest in dry shampoo (I know it sounds crazy as my first suggestion but my hair drove me crazy, and the first week i had a very hard time lifting my arms above my head to even touch my hair, forget washing it. lol)
2. Dont get too worked up! (Yes this is a major surgery, but it will make a huge difference in your life!! I suggest taking the time before your surgery to make sure things are taking care of (bills,any cleaning, ect) so you wont have to worry about anything while your recovering) (get some good books, movies, craft projects even to keep your self occupied during your recovery) And discussion boards and support groups also help alot too!! I know it put me at ease to hear from other people that have had the surgery and have had all the issues with headaches, and everything else that I did. It really helped put me at ease.
3. I suggest getting a pregnancy pillow (I know this is even weirder!!! but the huge "U" shaped pillow was amazing to have because I was only comfortable laying on my side and it helped SOOOO MUCH!!!) and your probably wondering where the heck I came up with this one, A women in the hospital that i shared a room with, had neck surgery and had one and said it was her saving grace and it became mine too!!!
4: Keep moving as much as you can (with taking it slow) when your recovering! It will make all the difference in the world when you move around a bit. Go outside get some fresh air and sunshine!!!!
I know those suggestions are all over the place, but I wish I knew about some of them before my surgery!!! But I have to tell you I have yet to have a chiari headache, and this is the longest I have gone without a headache in almost 10 years!!!!! Good Luck to you and hope that everything goes well!!!!!
Beeba thank you so much for responding! But the reason i am waiting until the summer because just about 2 weeks before i got diagnosed with Chiari i got a new job working in a elementry school so i really rather not take any days off at all. My only symptom is the head pains thank god nothing else and when i did see my surgent he said that it shouldnt be a problem waiting for the summer his exact words were "you been dealing with the headaches this long if you can go a few more months it should be fine". I have 13 MM and just have to do an MRI of my spine. If i read right you have had the surgery more then once ??
Beeba said:
Nicole, everyone reacts to surgery differently. For most people they are out of work for a minimum of 6 weeks. Again though every one is different. Also depends on any other issues you may have. Is there a reason you did chose to wait until summer? I only ask because once I made the decision (sadly both times) I wanted to move ahead. Even waiting these few days is killing me. And at least for me it seems like when the symptoms start they only get worse. My fear was that if something isn't right it should be fixed asap so not to cause any further issues - things are suppose to work a certain way and if they aren't my assumption would be that isn't good. I only wish I had known at 20 I could have alleviated years of vague symptoms and probably never would have gone through what I went through. But who am I kidding they didn't even have MRI when I was 20!!! Good luck in your decision making - pretty heavy stuff for a young girl who should be enjoying her life not sitting with a terrible headache. I am sorry you have to deal with this. Please keep me up to date.
Kimigibler Thank you so much for responding ! Your respond really helped me out a lot. Its funny that the first thing you talk about is your hair becasue when the doctor first told me i have chiari the first thing i said was they dont have to shave my head right. I absolutely LOVE my hair it is very long and im so upset they do have to shave a part of it I know for some people it might sound crazy lol but thanks for that helpful tip. Im already preparing to just be home relaxing for my summer try not to be moving around to much im just praying that my recovery goes well. This really makes me feel better talking to someone who has had the surgery and i know everyone reacts diffrent to surgery but i see that you said you just had surgery 5 weeks ago are you still in any kind of pain have you been feeling better and better day by day ?
Kimigibler said:
Having the surgery was the best decision I have ever made!!! I'm 24 and had my surgery only 5 weeks ago. Like you probably have heard before, everyone reacts differently. For me, the first few days after the surgery were painful, and uncomfortable, but with pain management and rest you will be fine!!! When I came out of surgery and was fully awake, i felt like crap :x but with the pain meds i was able to feel a bit more comfortable. I needed a bit of help moving around and switching positions in bed, but the next day I was up walking around and did much better. When I was finally home, it made all the difference in the world to be in my own bed. It all about taking it easy those first couple weeks.
Some suggestions though,
1: if you have long hair, invest in dry shampoo (I know it sounds crazy as my first suggestion but my hair drove me crazy, and the first week i had a very hard time lifting my arms above my head to even touch my hair, forget washing it. lol)
2. Dont get too worked up! (Yes this is a major surgery, but it will make a huge difference in your life!! I suggest taking the time before your surgery to make sure things are taking care of (bills,any cleaning, ect) so you wont have to worry about anything while your recovering) (get some good books, movies, craft projects even to keep your self occupied during your recovery) And discussion boards and support groups also help alot too!! I know it put me at ease to hear from other people that have had the surgery and have had all the issues with headaches, and everything else that I did. It really helped put me at ease.
3. I suggest getting a pregnancy pillow (I know this is even weirder!!! but the huge "U" shaped pillow was amazing to have because I was only comfortable laying on my side and it helped SOOOO MUCH!!!) and your probably wondering where the heck I came up with this one, A women in the hospital that i shared a room with, had neck surgery and had one and said it was her saving grace and it became mine too!!!
4: Keep moving as much as you can (with taking it slow) when your recovering! It will make all the difference in the world when you move around a bit. Go outside get some fresh air and sunshine!!!!
I know those suggestions are all over the place, but I wish I knew about some of them before my surgery!!! But I have to tell you I have yet to have a chiari headache, and this is the longest I have gone without a headache in almost 10 years!!!!! Good Luck to you and hope that everything goes well!!!!!
Im doing well! I am experiencing this weird sharp pains that i have been calling "rushes" (feels like when you get up to fast) But I also have been doing too much i think since I am only 5 weeks out. But this has been the longest I have gone without a Chiari headache!!! and many of my other symptoms are also disappearing which is worth everything :) And dont worry about your hair, they will only shave enough to make the incision which you can easily hide by wearing your hair down :) Im still rocking this sweet 90's skullet because I made the awesome (lots of sarcasm here lol) idea to cut my hair before my surgery into a bob... but with clip in extensions my scar is easily hidden, although i dont really mind it. Please dont hesitate to ask me any questions :)
Nicole said:
Kimigibler Thank you so much for responding ! Your respond really helped me out a lot. Its funny that the first thing you talk about is your hair becasue when the doctor first told me i have chiari the first thing i said was they dont have to shave my head right. I absolutely LOVE my hair it is very long and im so upset they do have to shave a part of it I know for some people it might sound crazy lol but thanks for that helpful tip. Im already preparing to just be home relaxing for my summer try not to be moving around to much im just praying that my recovery goes well. This really makes me feel better talking to someone who has had the surgery and i know everyone reacts diffrent to surgery but i see that you said you just had surgery 5 weeks ago are you still in any kind of pain have you been feeling better and better day by day ?
Kimigibler said:Having the surgery was the best decision I have ever made!!! I'm 24 and had my surgery only 5 weeks ago. Like you probably have heard before, everyone reacts differently. For me, the first few days after the surgery were painful, and uncomfortable, but with pain management and rest you will be fine!!! When I came out of surgery and was fully awake, i felt like crap :x but with the pain meds i was able to feel a bit more comfortable. I needed a bit of help moving around and switching positions in bed, but the next day I was up walking around and did much better. When I was finally home, it made all the difference in the world to be in my own bed. It all about taking it easy those first couple weeks.
Some suggestions though,
1: if you have long hair, invest in dry shampoo (I know it sounds crazy as my first suggestion but my hair drove me crazy, and the first week i had a very hard time lifting my arms above my head to even touch my hair, forget washing it. lol)
2. Dont get too worked up! (Yes this is a major surgery, but it will make a huge difference in your life!! I suggest taking the time before your surgery to make sure things are taking care of (bills,any cleaning, ect) so you wont have to worry about anything while your recovering) (get some good books, movies, craft projects even to keep your self occupied during your recovery) And discussion boards and support groups also help alot too!! I know it put me at ease to hear from other people that have had the surgery and have had all the issues with headaches, and everything else that I did. It really helped put me at ease.
3. I suggest getting a pregnancy pillow (I know this is even weirder!!! but the huge "U" shaped pillow was amazing to have because I was only comfortable laying on my side and it helped SOOOO MUCH!!!) and your probably wondering where the heck I came up with this one, A women in the hospital that i shared a room with, had neck surgery and had one and said it was her saving grace and it became mine too!!!
4: Keep moving as much as you can (with taking it slow) when your recovering! It will make all the difference in the world when you move around a bit. Go outside get some fresh air and sunshine!!!!
I know those suggestions are all over the place, but I wish I knew about some of them before my surgery!!! But I have to tell you I have yet to have a chiari headache, and this is the longest I have gone without a headache in almost 10 years!!!!! Good Luck to you and hope that everything goes well!!!!!