Upcoming decompression and craniocervical fusion surgery!

Welcome Greetings and Introductions
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Hello All,

I am a brand new member and i think that this will be very helpful for me throughout the process of being treated for my chiari. I was curious if anyone has had a posterior fossa decompression along with a craniocervical fusion in the same surgery?? I am preparing for these operations on August 4th at TCI. I mostly would like to know what to expect with recovery. I am very fearful of this process as I have never done well recovering from surgery. (always in a lot of pain for a long period of time) If anyone has any reccomendations along with advice on what to expect it would be greatly appreciated!!

Marisa :)

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Hi Marisa.....WELCOME!!!

Sorry that you have to go thru a major surgery ..but you have found the right place for support!! I know that I have gotten lots of info and support here..I know you will too.

I had the posterior fossa decompression and C1 lamenectomy...I did not have the craniocervical fusion like you are having.

So, i can only tell you how i did...i spent 7 nites in the hospital....1 nite in ICU....right after the operation, in the recovery room..the nurses and doctor makes sure you are well medicated...not out of it..but at least tolerable.

I went prepared..with cozy jammie bottoms b/c i didn't want my butt hanging out with those awful gowns you have to wear ..also...i brought a fleecy blanket from home ..which was a wonderful thing..i folded it and put it over the pillow case...naturally , the incision is going to be sore ...that really helped!

Don't be shy...tell the nurses when you are in pain...no heroics !!

The 1st few days after I was wobbly on my feet..used a walker, then cane...my NS said this was b/c my brain/body was not use to the CSF flowing correctly....he said it takes a while for the body to adjust to the new flow...he was 100% right.

I will be honest with you....the worse day was the day after surgery ..when the NS's PA .physicians assistant...came to see me..we had a great rapure....he told me i was going to hate him after he took the bandage off.....he was right...I said a few choice words..LOL....When closing after the operation was done...the PA place a large piece of guaze type thing on the incision ...when he took it off....all the dried blood and hair around it came off too!! hurt like hell...so, if i were to do it again...b4 the operation...I would ask the NS to PLEASE wrap my head like a mummy or whatever...just don't slap a piece of gauze there to save the hospital 2 bucks!!!!LOL....But ya know, now I laugh about it..so, I guess it wasn't that bad!!!!

Once home....I was still on pain meds for a while..but I found that moving around was good for me , mentally as well as physically. I had good days and not so good days right after..that is natural with any operation...Trust me......it does get better....

Oh, sorry for this long response....one more thing....make sure they give you stool softeners in the hospital...between the pain meds , not moving around a lot ect...you do not want to get constipated!!! I even brought my own Senecot from home...that is a natural veg. laxative..they sell it at Wal-mart....I get the generic...4 bucks. Just my experience.

Marisa,I am so happy you found us...we are all here to help one another.....keep us updated.

Blessings,

Lori

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Marisa, I did have the decompression and the cervical fusion in the same surgery plus I had severe basilar invagination which had caused my brain stem to become kinked corrected. The angle of my bones going up into the skull was only 126 degrees instead of l80. The doctor took the bones apart, lifted my head higher and fused everything back together with two bones he harvested from the ribs and corrected it to l56. Unlke Lori, I didn't wake up in a lot of pain; actually when I first woke up nothing hurt. I never had what I condidered intolerble pain in my neck or head. My worst pain, and it really wasn't intolerable with pain medication was the incision on my back. When the doctor told me he was going to basically take my head off, I was, of course, scared. But nothing was as bad as I could imagine it to be bed. I did not find everything a horrific experience, i was uncomfortable for quite awhile, but it wasn't really so bad. I had to wear a cervical collar for over a month almost 24 hours a day. I'm claustrophobic, so that was the part I worried about the most. Another Chiari patient told me about the Aspen Vistas Collar and let me wear hers during a Chiari educational meeting where I met here. It is a collar which is adjustable up and down as well as around and is very cushiony. After my surgery I got to the point where I was very comfortable in it; didn't have any trouble sleeping in it either. Even though I'm ll months post opt now, I still wear it sometimes in the car if I'm going to be in a lot of traffic. I would highly recommend it. My doctor ordered it before my surgery and I took it to the hospital with me.

I was up and did a walk up and down the hall the day after my surgery. I was lucky that I didn't experience any problems from the anesthetic. I had done some water therapy for about a year before my surgery and I think that helped me be stronger for my recovery. I slept for several weeks after I came home; was tired and still took some pain medication - not much - mostly when I went to bed at night. I didn't have any stiches on the outside of my incision - no zipperhead- they were all on the inside and were the dissolving kind. My doctor had a home health nurse come by every so often and change the dressing on the back of my neck - it wasn't a hugh dressing, it just covered the incision. She came for about a month if I remember correctly. I got up every day and ate my meals sitting on the couch. I was fortunate that I had friends who cooked for us during that time and brought the meals and had them ready to eat. All I had to do was sit down and eat. I hope you will have that kind of help too. It's very inportant that you get lots of rest afterwards and allow your body to heal. I found that I had to use the computer during that time. If I did, I suffered. It made my neck hurt and it still will make it start hurting if I stay on the computer for too long at a time. I ended up with quite a bit of mobility in my neck. I have almost total up and down movement and pretty good movement to the right. I'm limited when I try to turn to the left.

That's my experience. But we all react differently to surgery and recovery. Different doctors do different procedures; mine didn't open the dura, but some doctors do. As I said I don't have a zipper scar and my scar is almost totally gone. Before I had my surgery I found as list of questions on the internet to ask the surgeon before surgery. It was on one of the chiari sites. My doctor took the time to answer all of them for me. I was there so long he actually gave me food! I thought it was important to have a surgeon who does a LOT of these surgeries and I was lucky enough to have one who does them every week and operates on people from all over the worl. I hope your experience will be as good as mine. I didn't go into the surgery with the expectation that I would be perfect afterwards. I was hoping just to make things better. If I had known how much better it was going to make me feel, I would have done it sooner. It's nice to not be so dizzy and foggy headed. I can actually walk a straight line now, Probabably still wouldn't pass a sobriety walk, but I don't drink, so..... Having the dizziness gone alone made the surgery worthwhile for me. Also, knowing that I have done what I can to halt progress of the Chiari gives me a freedom of worry that i didn't have before. It is what it is and I have done what I can to make my life better......and it is. My prayer for you is that yours will be too. I'm praying for you as you go through this difficult time.

Hugs

Shirley

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Lori and Shirley,

Thank you sooo much for your responses. I really appreciate the advice and I now feel like I know a little more about what I'm getting into. All of these things are very helpful!! I'm so glad I joined. I already feel so much better about everything! I am going to make up a list of questions to ask my NS when we meet a couple days before surgery.

Shirley,

Do you know where I can find that list of questions you mentioned? That would be so helpful!!

Thank you again! I will keep you guys updated!

Marisa

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The website I used is:

http://www.pressenter.com/~wacma/askdoc.htm

Hope this helps.

Hugs

Shirley



Marisa2140 said:

Lori and Shirley,

Thank you sooo much for your responses. I really appreciate the advice and I now feel like I know a little more about what I'm getting into. All of these things are very helpful!! I'm so glad I joined. I already feel so much better about everything! I am going to make up a list of questions to ask my NS when we meet a couple days before surgery.

Shirley,

Do you know where I can find that list of questions you mentioned? That would be so helpful!!

Thank you again! I will keep you guys updated!

Marisa

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Hi Marisa....

Hope you are doing ok..in my thoughts.

Please keep us updated!!

Lori

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Marisa,

Hi....just wanted to say hey and let you know I am here, as well as the gang here, for you...praying for a great outcome and quick recovery for you.

Let us know how you are.

Lori

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You all are so great on here. Sharing your stories of post op really helps us upcomers of surgery. For me def it has taken away some of my fears of after the surgery. I feel better already. Thanks!

Lots of love and prayers to you Marisa. I'll be thinking of you honey!

Love, Christine XO

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I haven’t had any surgeries yet but I will pray for you and send you lots of positive thoughts! :slight_smile: Nice to meet you toO!!

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Thinking of you!! All will go well !!!