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Jazzmine1212 10-28-2012 10:49 AM

c1 c2 fusion headaches normal?
I had a c1 c2 fusion about a week and a half ago and it's been really hard recovering. Most of my problems are with my headaches more than the neck. It goes to my forehead up around the top of my head. The worst is trying to sleep at night because laying down makes it 10x worse. It seems to be not that bad when I initially put my head down but after a couple minutes into it the pain just gets excruciatingly bad. I can't lay on my back at all that's the worst of the positions. I can't even sleep propped up with pillows because my head still has to lean back a little. I sleep a little better on my sides...but I still feel the pressure and pain but not as bad as when I'm on my back, although I have to flip to each side about 6 or 7 times at night to dull the pain a little. I feel it from the base of my skull by the neck up to my head. It's like my whole head is killing me. Is this normal? Before surgery I had this problem but it wasn't as bad... and now it's much worse than before. I feel like I'm going to go crazy. My mid back is starting to really hurt too now. How long until my head feels better?

What's worrying me is that one of the surgeons asked me a couple days after the surgery if I feel a lot better with the headaches. He said I should feel better, but the other surgeons was saying it's a painful surgery. I'm worried that these headaches won't get better. Can anyone please give me some advice that knows about this? I would be so thankful.

georgie782 10-28-2012 11:11 AM

Re: c1 c2 fusion headaches normal?
My husband had a c6-7 fusion 3 weeks ago, his headaches arent any better then they were from the start. He had fallen and the surgeon thinks that when he hit his head it shifted his scull just enough cause thie headaches and he also told him that his headaches may get better stay the same or get worse. They are no better and sometimes worse he told me to let you know that when you go to bed, lay on your back with a very flat pillow or like he has a feather pillow and dont let it hit your shoulders and force yourself to sleep like that if you can, he said it really makes a difference when using a feather pillow or a flat one. When his head hurts really bad in the day he tries to rest in his recliner with the tv down low and try not to do any mind thinking, another words try not to engage in any talk where there is thinking involved he cannot multitask at all. Good Luck to you, see you on again.

teteri66 10-28-2012 07:48 PM

Re: c1 c2 fusion headaches normal?
I would think the headache from a c1-c2 issue would be quite different from one stemming from C6-C7.

I would suggest that you call your surgeon tomorrow and let them know you are really struggling with the headaches when laying down trying to sleep.

If the symptoms are getting worse, you should call to report this too.

Let us know what you find out. It really isn't all that common to have fusion so high up as we have discussed previously. I'm sorry you are having so much pain. I'm not sure what you were expecting regarding recovery, but, with any spinal fusion surgery, one needs a great deal of patience. It takes a long time and has its ups and downs....

badhbt 10-30-2012 10:44 AM

Re: c1 c2 fusion headaches normal?
Hi there! I had a c1 c2 fusion on the 25th. I am having the same I guess it makes it normal? I didn't have a problem with headaches until now. It is good to know somebody out there with the same surgery. I hope you are getting some relief. This has been the hardest thing I have ever done!


teteri66 10-30-2012 11:27 AM

Re: c1 c2 fusion headaches normal?
Glad you posted, and welcome to the board. You two can be recovery buddies! Not that many people have fusions so high up, so it will be nice to have someone to talk with who is going through the same thing.

How are you feeling other than the headaches?

I think surgeons tend to sugar coat the difficulty of recovery. I know they don't want to scare the patient before- hand, but sometimes it is better to be prepared so you don't think something is wrong when confronted with the assorted new aches and pains, etc. Be prepared to be patient.

badhbt 10-30-2012 11:50 AM

Re: c1 c2 fusion headaches normal?
I think you are so right. I am a nurse and I totally underestimated the recovery. The nurses even sugarcoated it. I am hanging in there. I have a new respect for surgery patients.

teteri66 10-30-2012 12:38 PM

Re: c1 c2 fusion headaches normal?
This is a bit off-topic...but a cyber-friend who is an nurse anesthetist and in her state is allowed to function as an anesthesiologist, being in charge of a surgery, told me that of all the surgical patients, they used to make fun of back patients, thinking they all were prone to exaggeration when it came to pain. Then she had a lumbar fusion and immediately realized how wrong she had been!!

badhbt 10-30-2012 12:44 PM

Re: c1 c2 fusion headaches normal?
I agree I had no idea how hard recovery would be and I am a nurse. The nurses even sugar coated it. I am taking it day by day.....really hard though.

Jazzmine1212 11-13-2012 12:13 PM

Re: c1 c2 fusion headaches normal?
It's been about 3 and a half weeks since my surgery and although I'm now feeling a little better, it's been still very difficult. I'm glad to know someone else is also going through this with me. I'm having a lot of back pain because of the stiffness. I tried to move my neck right and left also up and down...I know I'm not supposed to, but I can't move it. The up motion is more flexible, but it's hard to brush my teeth and rinse or even try to move a tiny bit down. Is this normal? I thought the surgeon said up and down isn't an issue with a c1 c2 fusion....only right to left will have some motion loss. It's worrying me that I'm so stiff. I have days that I'm in tears and get down. The hardest part is trying to care for me two young kids...I miss doing all the normal and usual things I did with them. The doc wants me to wear my collar for 3 months. How long are you supposed to wear yours? I hope your doing well.

badhbt 11-13-2012 04:16 PM

Re: c1 c2 fusion headaches normal?
Don't worry we are the exact same. I tried moving also and can't, I think we will need some physical therapy when we get out of these braces. I have to wear mine for 3 months also. Have you had trouble sleeping in yours? I swear I have tried every pillow in my house and nothing seems to work. I use my airplane neck pillow the most. I have days where I just cry like a little girl...and get down. I think it is all normal. This was a major surgery. Did you get your staples out? Does you scalp feel numb and weird? Sorry so many is just nice to know someone else is going through this. I don't have kids and I can imagine that has to be hard. It will be 3 weeks for me on Thursday. Hope you had a good day today. Hugs.

Jazzmine1212 11-14-2012 01:35 PM

Re: c1 c2 fusion headaches normal?
I didn't get staples just stitches that dissolve. My head is pretty much numb from the back and sides...almost my whole head is numb except for a small area above my forehead and around down the ears. He cut two nerves so that's why it's numb and it's going to stay numb. He did say the numb patch gets smaller in time though, but most will stay. I get headaches around my temples and forehead area. I'm miserable and tired of this collar and the stiffness. I can't do anything because I can't look down which is so important for doing things. I try to walk around the house to get some exercise, but I lay down or sit on the couch most of the time. I hope I get better....a part of me sometimes thinks it won't get better and that I'm always going to feel pain or discomfort. Can I ask how old you are? What state are you in? Also why did you need a c1 c2 fusion?

SteveeMed 11-14-2012 01:55 PM

Re: c1 c2 fusion headaches normal?
I have been diagnosed with Bow Hunter's Syndrome and the surgeons recommend fusing C1 and C2, I am not sure if I want to. Why did you have to have C1 and C2 fused? I hope you are doing better.

Jazzmine1212 11-14-2012 02:00 PM

Re: c1 c2 fusion headaches normal?
They think it's either arthritis or some auto immune disease or it's a small c1 bone I was born with that didn't give me problems until now. They're not sure, but I'm supposed to see a rhumatologist next month to see if I have anything.

SteveeMed 11-14-2012 02:05 PM

Re: c1 c2 fusion headaches normal?
I was wondering why you had to have your C1 and C2 fused? I have Bow Hunter's Syndrome and the doctors want to fuse my C1 and C2 and I am unsure about it, so I am trying to do some research before making up my mind.
I hope you are doing better.

Jazzmine1212 11-14-2012 02:17 PM

Re: c1 c2 fusion headaches normal?
I don't know what your situation is, but my c1 bone was unstable and loose. it was also pushing on my spinal cord. They said I had to have it done or else I could be paralyzed.

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