Fusion & Decompression surgery scheduled - No help any Advice?

So I finally booked surgery end of February at TCI for a cranial cervical fusion and a decompression. My husband will have to stay with our four young children and I am working on finding someone to go with me. It hard because I have a small family who can not leave town due to their jobs or chilren, so Im on my own. I have thougth of trying to hire an aide to go with me, but money is tight. So we will see.

Anyway, for those who have had a fusion, do you have any advice on traveling home. How did everyone feel after discharge. I know its a tough surgery, just trying to figure out how long I am going to need help and so forth. Any advice is greatly appreciated . You guys are a wealth of knowlege.

You will need a driver to get you home,decompression is a hard surgery and coupled with fusion will take lots of recovery.If you don’t take care of yourself you will pay later,this recovery is a long one and you have the fusion too so you will need help for a couple of months at least.Mine is out 15months and my symptoms are still present but not as bad.I can tell when I’ve over done it so please get some help if at all possiable.Good luck with your surgery,I will pray for a favorable outcome.

Mase, can you divide the kids up to different friends and family so your husband can go with you?

I wish but my little guys are only 2 and 3 . THe older children could go to a family member, but the no one is willing to help the the toddlers. They are very much in need of structured schedule at this age and they are very active boys. So its a tough choice, and my husband is torn about it, but I know my children will be happy and safe while Im gone. I feel like Im tough and I will be fine with out him, at least I try :)

My oldest som who is almost 14 will be a good help to me when my husband returns to work. Hes a super kid :)

Lynn -

I am thinking of flying there and back, just so the travel is shorter. Did you Fly as well ?

I was fortunate to get a NS here in my area so I didn’t have to travel.I know this is going to be hard but you have the chance to get well and that’s important for your kids too.My outcome has been a success but I am still dealing with issues left behind from damage from chiari.Where do you live? I live in Clyde,N .C.the nearest city is Asheville.I do wish you had more help but if you can get over the first few months it should get better.This recovery is the slowest healing time I’ve dealt with as for surgeries and There’s been quiet a few of them.The brain is truly a strange organ to heal it’s up and down so there’ll be good days then bad days just remember that a bad day doesn’t mean things are really going the wrong way it’s normal.Does your surgeon know you are going to fly?I hope it all works out for you.My surgery is 15months out and things are still changing and some days better than others but it took me so long to get help it’s truly a miracle to feel better.

I had my surgery in New Zealand and was lucky enough to get a funded flight home after surgery. Thank goodness, as the 5 minute drive from the hospital to airport was hell. There would’ve been no way I could have coped with the 5 hour drive home. I recommend to have someone to help after surgery, I felt really bad for first couple of days, couldn’t even sit up to have a drink. I would have been lost without my support person.

Hi Mase! I would definitely have someone go with you! You will be on major meds after your surgery and you will want someone to be with you. I had my surgery with TCI back in May last year. I had to be there a couple days early and had to stay in the area for several days after I was discharged from the hospital. The recovery is super tough, so a support person is really important. There is a house specifically for TCI patients and families to stay for cheap right across the street from the hospital if you need it. You have to call to make sure they have a room available. That was a great help for my husband while I was in the hospital, as he was only allowed to see me every 3 hours for a short time during the first 24 hours after surgery. So it gave him a place to go and relax and rest. I hope you can get it worked out for your husband to go…you will want him there with you. Please let me know if you have any other questions that I might can help with! Good luck!

Hi! I am 10 months past my crainial cervical fusion and decompression surgery. And I am doing wonderful. You will definately need help for at least two months, especially with such little children. Take it slow and give yourself the proper recovery. It is most important.

I had the surgery at TCI, but I am lucky enough to live on Long Island only a short trip from the hospital. Please know that it can have wonderful, positive outcomes. My advice for the trip home is take it slow. Sit down or lay down whenever you can and have a small, soft pillow with you at all times. I still keep on with me for anytime I may need it. It helps make the back of my head feel comfortable and secure because I have some parts that have lost feeling. It's no big deal, but the pillow makes me feel more comfortable.

Please feel free to contact me or friend me at any time. I wish that I had had more postive people answer me before the surgery. It would have helped a great deal.

that is a very hard surgery you do need someone to go with you I had my surgery jan 2012 and I still struggle with it. where are you having your surgery at if you don't mind me asking


I am 6 months out of surgery and the best advice I can give you is to make sure you have your prescription for pain meds BEFORE you get home from the hospital. Make meals and freeze them for easy preparation like spagehtti, chili, soups, etc. The airplane type neck pillow was a lifesaver for me. I found one at Big Lots for $3. I would've paid $100 for it knowing how it helped me keep my head up and comfortable. I too have four kids but my teenager stepped up and helped with her sisters. Make a list for friends and allow them to help. I was fortuante to have people just stop by and bring meals and snacks for the girls.

Just take it slow when you get home and stay on schedule with the meds. If you miss a dose just one time you'll never miss it again. The pain eases up but you WILL get thru it. This procedure will be a cake walk for you. As a mother of four, you are a strong woman! God bless you and your family!

Mase, I think youll be ok without a family member while you are in the hospital, but not for the flight home. Someone needs to fly out to meet you and fly home with you.

I can't give you any advice on the surgery or recover its self. I'm on the site because my daughter was diagnosed. But I have been recently been through a very difficult pregnancy with a long recovery and had to deal with not being able to take care of my family (or myself for that matter..haha). It seems the recover has some similarities.

You'll probably get plenty of medical advice from doctors and nurses. I think the practical advice is just as important. Be realistic about what you can and can't do. It's hard for us super moms to not be able to take care of everyone else in our family but if you don't take care of yourself first you can't take care of anyone else. Please take all the Chiari patient's advice and take it easy. It seems the payback for overdoing it is always worse.

Since you get to plan your surgery ahead of time, assume that you will be unable to do more than you thought. I remember when I had to be happy when my only accomplishment for the day was starting a load of laundry. (how pathetic--but I did something :) ). Stock your freezer with prepared meals. Make a list of items that friends and family can help with would also be helpful. And don't forget little things that they could help you with, even something simple that you COULD do but if they could do the task for you then maybe you could spend more time cuddling with your kids, because you'll probably feel like they are getting neglected while you are recovering. Friends and family want to help but they often just don't know how or what would benefit you. So if they say, "if there is anything I can do..." take them up on it Maybe it is just companionship, maybe they could fold a load of laundry while talking to you or unload your dishwasher, or pick up the toys in the living room (not a hard tasks....unless you can't bend over.:)... but they will feel helpful..) I was feeling so awful and out of it that I often couldn't even come up with a list for them. It was just more stress to formula the list so I avoided it. So if you cold think of things before you're "wacked out" on paid meds that might be helpful. Also consider items that might help your husband. He will probably be taking over some of your mom responsibilities so maybe some help for him. (we live on a farm so our family could do chores for him so he could do more household things). Maybe some friends can take the kids for a play dates. Even a hour here and there is helpful. Is there some young kids around that could come and play with the little ones. Maybe someone too young to be a babysit on their own but with you there they could at least distract the toddler while say you made supper or attended to something else (cause everything will take you longer to do than you plan...oh wait your a mom you already know this rule. hah

Set your standards low. You're house will not function the same while you are recovering. It doesn't have to be perfect or up to your pre-surgery standards. Are your kids health, and I'm going to say, relatively happy? Is it that big of a deal the floor hasn't been swept in two weeks. It takes a little mental readjustment.

You might feel like you are neglecting your children. I mean not so much as physical needs but just attention in general. I remember just missing my daughter. Yes she was in the same house but I spend all of my time sleeping or in a quiet room, if she could hang out with me it was for short periods because she was to rambunctious and her bouncing in the chair would make sicker. I missed some of her activities. She would say when are you not going to be sick so you can play with me. It just made me sad. So my advice is that even though the recovery might feel like the longest thing in your life (2 years for me) it is a relatively short period in their life and they bounce back easily. Kids are resilient and they will not be scarred for life :). You might just adjust what "quality time" together means. Our big event for the week was going to the grocery store, what a highlight huh? We live in a small town so the store isn't very large and it didn't take long and we would make a pit stop at a little park. I mostly rode along and sat and watched but it was our family time for the week....yeah to the grocery store. We didn't plan anything else so if I felt terrible we could cut it short. My daughter was 4 and looked forward the weekly "chore".

Lastly go back and read this well after the surgery, because right now with might just seem silly. Keep faith that you'll get though and roll along with the bad days. Don't hesitate to seek some help for the psychological aspect of dealing with a chronic condition or long recovery. I can't say all of the above is all my own ideas. I had a counselor that was very helpful. I didn't see her often, and at the time had a hard time justifying spending the hours with her instead of my family since I had limited time in the day to "function" but it was worth it. I'm new to this support group but it looks like it a great place to be.

I said lastly but one more, try to surround yourself with the "positive" people in your life. You know the ones that always make you feel better. Avoid those that stress you out. (one of mine was my mother...very hard for me to be ok with the fact that she isn't or won't be my go to person just because she is my mom) You'll have a good excuse to avoid them...... "I'm not feeling well".

Good luck to you and your family with your surgery!!

You all are so wonderufl. Thank you for taking the time to give me such kind advice. Its great to know that it all can and will work out.

For those who have had the surgery with TCI, does he give you prescriptions prior to release from hospital. I am assuming you all have them filled at a pharmacy nearby.

Also, does anyone know if the Variety house has internet ? This way if Im up to it, I can skype with my kids.

Hi Mase! Yes, The Variety House does have wi-fi. I facetimed with my kids while there. You will get a prescription before you leave the hospital. My husband just went down to the pharmacy there and got them filled. But they will tell you that if you need refills, to call them before you leave the area.

Hi. May I ask why you are getting fused? Is it your 1st surgery? Anyway. .private message me if you like. I live near the TCI. Maybe I can help in some way.

Thank you Jessica, I will pm you.