I am back finally after undergoing Decompression and Craniocervical Fusion surgery on August 4th. First, I would like to thank everyone for their support during this most difficult time. It means so much to me. I'll give you a quick bit on the surgery and then go into the main reason I am writing this discussion.
My surgery went pretty well. A total of 11 hours in surgery. One thing to note, I did have to stay intubated and asleep overnight (which they warned me of ahead of time) due to the fact that the operation was so long resulting in some severe swelling in my face and throat. It was safer for them to keep me intubated and asleep overnight to allow that swelling to go down before they exubated me the following morning. I then spent two nights in ICU and then another 5 nights in a regular room for a total of 1 week hospitalized. The pain was bad. And getting my pain meds situated was a difficult process. I am still dealing with some very severe pain from surgery. Everyday is a struggle.
Since my surgery I HAVE NOT HAD ONE OF MY HEADACHES/MIGRANES THAT I HAD BEEN SUFFERING FROM EVERYDAY!!! (my primary symptom) I am very happy to report this! It is such an incredible relief to not feel that excruciating pain that i dealth with everyday for 3 1/2 years. But i am of course still in some pretty severe surgical pain, which is to be expected. My recovery is going to be much longer than those who just had a decompression, because the fusion is much more severe and painful and takes a very long time to recover from.
But the hardest part for me right now is unfortunately my depression. I am having a very hard time wanting to get out of bed and do anything. I am having an even harder time with my family, especially my younger brothers who are in their first year of college. They are so inconsiderate and other than the first couple days i was home have not wanted to do anything whatsoever to help me when i obviously can't do many things for myself. I am so hurt by them and thier mean comments. They have never really cared about my horrible situation with my health and it hurts me more than ever. I do understand that they are young and immature, but to me, its not an excuse! I've been so depressed lately and I've just sort of crawled into a ball and just want to lay in bed all day. I feel neglected by my friends because they're all too busy to visit and other than my two best friends, I really havent had any visitors and that has been bringing me down. Even my best friends barely come by. I undertand that they're in school and all that and everyone has their own lives, but i am still feeling very lonely and neglected because of it. My mom keeps trying to get me up and going, but then we just get in fights and she says I need a support group and to get back to my therapy(obviously havent been due to recovering from surgery)
I just dont know what to do. Im feeling so alone and so un cared for and im really hurting very bad. I thought this would be better after surgery but it hasnt. Has anyone dealth with this?? Part of it is also because of the pain im dealing with post surgery, the fact that i dont get to do much but sit around the house, I cant just get up and drive and go somewhere(even though my mom stays home with me and we have been to lunch and a couple places but it is so hard for me.)
I know im blabbing a lot but im just struggling so much right now with a lot of things. I need all the support that I can get. :(
So happy your H/A's are better..as for the depression...IMHO.....completely normal...plus the pain meds can make you even more depressed....never mind family members that are USELESS!!!!! There are always at least 1 in every family!!!!!!
I am glad you shared your honest feelings with us...YOU ARE NOT ALONE..YOU HAVE US!!!!!!
Feel free to vent whenever you need too. I’d be happy to send you my number and you can text away. I am afraid of feeling like that after my surgery too. If there is anything I can do to help PLEASE let me know.
I had basilar invagination surgery and cervical fusion too. It is hard to stay still and do nothing. But....I think rest is an important part of the process for getting better. Five weeks post opt is not very long. Recovery from fusion is a process and I understand it takes about a year. I did nothing but sleep for about five weeks after my surgery; I haven't read about anybody else who did so much sleeping, but it seemed to work for me. I think I have a pretty high pain threshold, so, while I had pain, it wasn't anything that the pain medication I was given didn't control; I was given valium and diladid and that seemed to work for me. I didn't take the pain medication for very long after the surgery except for at night. I guess I'm lucky in that regard. It took about five months though before my neck was really somewhat comfortable and I woke up and felt "normal" again. I'm not sure I know what normal feels like, but I didn't feel so tired or sick. I wore an Aspen Vista Collar for about five or six weeks after the surgery full time and even after that when my neck got tired or hurtful. I did find that I had to stay away from doing some things or it would make my neck hurt. I couldn't do anything on the computer for about three or four months or I would pay for it afterwards. It's been a year now and I still limit how much time I spend on the computer. I still also will wear the collar if I ride in the car for any length of time.
I'm sorry you don't have people around who will encourage you and help you get the rest you need. That is so important for the recovery. I was lucky that my friends cooked meals for us and came to visit. I'm glad that you have at least a couple of people who come around and especially that you get out once in awhile for lunch; it is boring when you have to set around and do nothing. Hang in; a year ago I was like you; for the first time in my life I was wanting to get up and clean house LOL! It feels like the recovery time will never end; but the good news is that is does. The worst part is over and recovery gets easier as time goes by. You are in my thoughts and prayers. If you need someone to talk to, send me an email and I will send you my phone number. I have unlimited long distance and I'm retired, so I have time to talk. I hope you feel better. Remember you are not alone....you have us, your Chiari family!
Thank you Lori, the support means a lot. Unfortunately today was worse than yesterday. more fighting with my mom about my situation. she thinks i "dont want to feel better" and "need serious therapy". problem is i have been so exhausted everyday and can't bare waking up because im so tired. today i slept most of the day and of course that caused a fight in the house. I try explaining to her that this was not a cure and i will forever have these many conditions, but in her mind i'm just making excuses. i dont know why i'm so tired all day everyday but i can't help it. i wish it were not the case. another hard day :/ seems like they keep coming that way.
Thank you for all your well wishes.
lori said:
Hi...
So happy your H/A's are better..as for the depression...IMHO.....completely normal...plus the pain meds can make you even more depressed....never mind family members that are USELESS!!!!! There are always at least 1 in every family!!!!!!
I am glad you shared your honest feelings with us...YOU ARE NOT ALONE..YOU HAVE US!!!!!!
Thank you so much Mindy. I really really appreciate it. When are you having your surgery? and what kind? Mindy said:
Glad for the headaches being gone.
Feel free to vent whenever you need too. I'd be happy to send you my number and you can text away. I am afraid of feeling like that after my surgery too. If there is anything I can do to help PLEASE let me know.
Shirley, Thank you for your message! it did make me feel so much better, especially about the sleeping thing. All i have wanted to do since surgery is sleep. everyday i am so exhausted even if i dont do anything. but my mother thinks that this is the "worst thing i could be doing" (laying in bed sleeping all day) which part of me agrees with. But i literally can't help it. I can't keep my eyes open. I don't know what to do. Hearing that you slept a lot makes me feel better, unfortunately it doesn't stop the fights with my family(especially my mom) on this topic.
Thank you for all your support! it has been very helpful Shirley C. said:
Hi Marisa
I had basilar invagination surgery and cervical fusion too. It is hard to stay still and do nothing. But....I think rest is an important part of the process for getting better. Five weeks post opt is not very long. Recovery from fusion is a process and I understand it takes about a year. I did nothing but sleep for about five weeks after my surgery; I haven't read about anybody else who did so much sleeping, but it seemed to work for me. I think I have a pretty high pain threshold, so, while I had pain, it wasn't anything that the pain medication I was given didn't control; I was given valium and diladid and that seemed to work for me. I didn't take the pain medication for very long after the surgery except for at night. I guess I'm lucky in that regard. It took about five months though before my neck was really somewhat comfortable and I woke up and felt "normal" again. I'm not sure I know what normal feels like, but I didn't feel so tired or sick. I wore an Aspen Vista Collar for about five or six weeks after the surgery full time and even after that when my neck got tired or hurtful. I did find that I had to stay away from doing some things or it would make my neck hurt. I couldn't do anything on the computer for about three or four months or I would pay for it afterwards. It's been a year now and I still limit how much time I spend on the computer. I still also will wear the collar if I ride in the car for any length of time.
I'm sorry you don't have people around who will encourage you and help you get the rest you need. That is so important for the recovery. I was lucky that my friends cooked meals for us and came to visit. I'm glad that you have at least a couple of people who come around and especially that you get out once in awhile for lunch; it is boring when you have to set around and do nothing. Hang in; a year ago I was like you; for the first time in my life I was wanting to get up and clean house LOL! It feels like the recovery time will never end; but the good news is that is does. The worst part is over and recovery gets easier as time goes by. You are in my thoughts and prayers. If you need someone to talk to, send me an email and I will send you my phone number. I have unlimited long distance and I'm retired, so I have time to talk. I hope you feel better. Remember you are not alone....you have us, your Chiari family!
I am scheduled for decompression surgery nov 14th. I am going for another opinion just to be positive. I have no support from my family on the decision to have surgery.
Marisa2140 said:
Thank you so much Mindy. I really really appreciate it. When are you having your surgery? and what kind? Mindy said:
Glad for the headaches being gone.
Feel free to vent whenever you need too. I’d be happy to send you my number and you can text away. I am afraid of feeling like that after my surgery too. If there is anything I can do to help PLEASE let me know.
Awww Marisa. I'm so sorry you're so sad!! What a long surgery, you poor thing!!I understand your pain and the feelings you're going through. I just had my surgery on Aug. 23rd. Toughes surgery I have ever gone through. Painful as could be. They warned me about the pain, but I wasn't prepared for that!! Your surgery was obviously more involved. Mine was 5 1/2 hours. My surgery was more extensive than they thought. I too was in ICU for 2 days and the step down ICU for 5. They couldn't find pain meds that did the trick. I found out real fast who my family and friends were. Unfortunately honey this is what happens. Remember, you just had major brain/fusion surgery. You are amazing!!! I know you would like certain people to be there to love and support you right now. It hurts and I understand your feelings. You are courageous and each day will give you renewed strength and a pain-free existence. That's what really matters. The people who really care, will surround you with love and get you through this. I'm having my share of the blues myself. It comes with any surgery. This is a traumatic time in "our" lives. Brain surgery isn't for sissys, that's for sure!!!
Chin up sweetie, better days are coming Marisa!! XXOO :)
Marisa, I just had an appt. with Dr. B. yesterday. I have not had surgery yet and was there for a consult. He did mention to me that even the most gung ho patients with little pain after surgery often experience depression a few weeks after surgery. The fact that you are in considerable pain I am sure would compound the depression anyone would feel after such a traumatic experience. I think you feel so alone because no none really knows what this is like unless they personally are going through it. I will admit that before this hit me I would here about someone's pain and think "oh that's such a shame" and then get on with my life. This illness has definitely made me more compassionate to others going through chronic pain. Thank God for the internet where we can find others who know exactly what we go through. As for your brothers, sadly, siblings can be real jerks sometimes but I am sure they love you. They probably just are too busy being consumed with their own life right now and really cannot even comprehend the depths of your pain. Some people too are so worried through their loved ones surgery and when that loved one makes it through alive they think "wow, glad that's over". I haven't even had surgery yet. I have a very good husband, great kids, a caring sister, and good friends yet still there are times I feel so lonely. While everyone else is busy with and enjoying life I am fighting to make it through the day alone. Lean on your mom. She sounds wonderful. As a mom myself I can think of no place I'd rather be than by my daughter's side through the most difficult parts of her life. And remember all of us are here all going through different stages of the same battle. I wish you well. You will be in my thoughts and prayers.
I am so sorry that you are having such a hard time! I had surgery way back in 2006, and it did not help my pain. I was depressed. My pain is getting worse and there seems to be nothing that anyone can do for me so the depression is settting in again. It can be a lonly place to be in pain, but there are so many wonderful people here that know how it feels to be misunderstood! And I think most of us will want to listen to you and help how ever we can! If there is anything we can do! Prayers!
I hope you are getting all the rest you need and are starting to feel some better by now....it's a journey and it takes awhile. Just wanted you to know I'm thinking of you.