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Old 11-14-2012, 01:36 PM   #16
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SteveeMed HB User
Re: c1 c2 fusion headaches normal?

Thank you for replying so fast and thank you for telling me about your health issue.
I ask because it is not usual for the C1 and C2 fused it is usually lower. I hope you are doing better.
Bow Hunter's Syndrome is a very rare disease only fourty people in the world has it and I am trying to find someone else that has it.
I hope your recovery gets better.
Thank you,
SteveeMed

 
Old 11-14-2012, 03:29 PM   #17
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Re: c1 c2 fusion headaches normal?

I had os odontoidieum which is a birth defect for me. It caused me to have c1 c2 instability with cervical stenosis. I put it off for years until I started to get neurological symptoms...then that is what convinced me to do it. What were your symptoms that caused you to go through surgery? I know it was a big decision. I wish I had the dis-solvable sutures because the staples were hard to sleep with. My Doctor didn't tell me anything about the numbness. I am completely numb in the same areas you are. I just can't believe it could be permanent and my Doctor didn't even mention it. Being in the brace is a challenge. Which brace are you in? I am in the Miami J brace, but I also have the Aspen just to switch things up. I am 40 and I live in Washington. How about you? Is there anyone that can walk with you. I have someone that comes and walks with me. I couldn't go far at all, but I am working up to it. It does make you feel better to walk outside. Things are going to get better, it only takes time. Keep your head up, I know how this can get you down.

@steveemed I am aware of Bow Hunter's, but I didn't know how rare it is. Do you get symptoms every time you turn your head? Or what symptoms do you get?

 
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Old 11-14-2012, 04:17 PM   #18
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SteveeMed HB User
Re: c1 c2 fusion headaches normal?

I haven't had surgery yet, I just saw the spinal surgeon yesterday.
I am doing research about C1 and C2 fusion before I decide to have it or not.
Bow Hunter's is rare so there is a lot of research about it and the doctors admit they do not know a lot about it except not to turn my head left, back or forward or I could have a stroke, that is where the fusion comes in so I couldn't turn my head.
I hope you are doing well and thank you for replying so quickly.
SteveeMed

 
Old 11-14-2012, 04:20 PM   #19
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SteveeMed HB User
Re: c1 c2 fusion headaches normal?

I haven't had surgery yet, I just saw the spinal surgeon yesterday.
I am doing research about C1 and C2 fusion before I decide to have it or not.
Bow Hunter's is rare so there is a lot of research about it and the doctors admit they do not know a lot about it except not to turn my head left, back or forward or I could have a stroke, that is where the fusion comes in so I couldn't turn my head.
I hope you are doing well and thank you for replying so quickly.
SteveeMed

 
Old 11-14-2012, 04:59 PM   #20
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Re: c1 c2 fusion headaches normal?

Steve, I read about it and it seems like people with your condition find out when they are really young. Did you just find out about this? Can I ask how old you are? Also did you see several surgeons for different opinions? I went to about 4 or 5 surgeons until I found one that I felt comfortable with and that was willing to just do my c1 and c2 only. There were others that wanted to fuse all the way to my occiput and that would have been a lot more harder to recover from.

I'm in my mid 30's and I was fine growing up up until a year ago when I started having neck pain. I went to see several doctors and they all said I was fine and to seek physical therapy. Well that was just made things a lot worse. Everytime I saw a doctor they would say physical therapy would help, but after 3 physcial therapist and 5 doctors in a year the 6th doctor finally figured it out by a simple xray. By that time I could hardly move my neck and the pain had gone to my head. My walking was off and I couldn't hold my head up straight. So then after that I saw several surgeons to find the right one. And here I am. I go back in 2 weeks for my 1st xray to see if I fused. I hope so! I have an Aspen I wear and a Pacific collar to sleep in. I also am taking forteo to help with the fusion and my really low bone density.

 
Old 11-14-2012, 05:20 PM   #21
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Re: c1 c2 fusion headaches normal?

Wow it sounds like it has been a long road for you...how frustrating. I also had to find a surgeon that would fuse c1 and c2 only without doing the occiput. I didn't want to lose that much motion in my neck. I hope your xray shows fusion, I will pray for you. I did the donor bone because my surgeon thought using my own bone would be painful. I hope mine fuses because I would really hate to go through this again. I also had walking problems...which was really scary. Has your symptoms gotten any better yet? If not I wouldn't be too discouraged...I think it takes awhile to heal. Lets keep in touch. It is comforting to know someone else out there is dealing with this. I hope you are getting relief from your headaches. Does your surgeon know you are having them?

 
Old 11-14-2012, 06:29 PM   #22
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SteveeMed HB User
Re: c1 c2 fusion headaches normal?

I am 61 yrs old and did not notice anything until about 6yrs ago I started falling and getting lightheaded and nausea. I thought it was my heart because I have a dual chamber pacemaker and cardiomyopathy so did the doctors. in the past year I have fallen quite a lot and noticed it was when I looked left. So my primary doctor sent me to a neurosurgeon and they decided to have a neuro angiogram and it showed that indeed I have Bow Hunter's Syndrome, Disease or Stroke it is caled all three. I have seen four neuro and spinal surgeons and from what they know only the C1 and C2 would be fused it wouldn't take the Bow Hunter's away but it will stop me from having a stroke from turning my head left.
Stevee

 
Old 11-14-2012, 07:06 PM   #23
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badhbt HB User
Re: c1 c2 fusion headaches normal?

That is so interesting. The human body is amazing. How do you prevent from looking to the left? Do you wear a neck collar? Are you thinking about doing the surgery?

 
Old 11-14-2012, 09:41 PM   #24
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Re: c1 c2 fusion headaches normal?

Oh that is interesting. I guess if you don't do the fusion then you have to make sure you don't look to the left? You don't have any other reason then to do the c1 fusion correct? Since you stopped looking to the left have all the symptoms gone away?

To Badhbt - you said you knew you needed the surgery for a few years. ..how did you get diagnosed? Did they take an xray for a reason? What made them look there to find it?

 
Old 11-15-2012, 05:55 AM   #25
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badhbt HB User
Re: c1 c2 fusion headaches normal?

I found out in my twenties when I was in a car accident. They thought I broke my neck in the accident, but with further testing they were able to tell it was not a new break. When I was born my head was stuck looking one way. My mom was instructed to stretch and force my head the other way several times a day. One day she heard a loud pop and I wouldnt stop screaming. She took me to the ER and they told her the she cured me because I could turn my head both ways....that is how they did it in the 70's haha. Why did it take them a year to diagnose your problem with a simple X-ray?

 
Old 11-15-2012, 10:52 PM   #26
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Re: c1 c2 fusion headaches normal?

Ouch wow. I'm amazed you lived with that until now. Nobody thought to do a simple xray. They all were looking at my MRI's saying they don't see anything wrong. They all thought that. These were some good doctors too, but they never thought to look at c1 or c2. They all asked me if I was injured and I said no. So I guess they didn't bother looking there. It just makes me mad thinking about it because I started to believe it myself until I went to the last doc who took an xray and found the problem.

Are you able to do stuff around the house? What kind of things do you do at home? I hate not being able to drive. Do you drive? I never knew how important it is to look down because almost anything I want to do requires you to look down. Are you able to move your head down to look? I feel the swelling is coming down, but not having the freedom to move my neck and body the way I want frustrates me. I can't imagine healing to the point where I don't have to think about my neck while moving. I hope that happens. Did you ask your surgeon about life and how movement will feel and be like after? What did he say?

 
Old 11-16-2012, 03:47 PM   #27
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badhbt HB User
Re: c1 c2 fusion headaches normal?

That sounds so frustrating....I know how scary it is to have symptoms and to not know the cause is even more scary.

I was in such a rush to get the surgery done that I didn't know what questions to ask. I believe he said I would lose 30% of my neck mobility. I can't drive with my brace on...I hate being confined to the house. I walk around ok, I have been on a few walks in the neighborhood. I can look down, I can't see my feet unless I bend at the waist. Do you feel tight in the back of your neck? I feel like I can feel the hardware in there. I too hope I feel normal. Do you work? If so when do you plan on going back. I can't imagine going back right now. How are you sleeping? Do have any secrets on getting your neck comfortable?

 
Old 11-16-2012, 08:21 PM   #28
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Re: c1 c2 fusion headaches normal?

I don't work right now. I'm a stay at home mom of 2 kids under 6 years old. I have been sleeping with three pillows...not stacked on top of each other though. I have one under my body more of a flat one. Then I have one a little above the head with the third one on top of the two below. So it's almost like a triangle if that makes sense. I sleep on my sides only and I also use a pillow between my knees. I walk fine too but I can't look down right now at all it's way too stiff. Your lucky you can move it because I can't move any direction right now. The doctor doesn't want me to move it anyway because he doesn't want the hardware to come out. So I don't really try to move it anyway. I cheat sometimes just to see what kind of movement I have and when I try and see I can't move it right, left or down it discourages me, but I know they said it's normal to be stiff. I just hope looking down isn't going to be a problem because I never knew how important it is to be able to look down since we have to do it everyday for almost anything. Did you have your surgery from the front or back of your neck? I hear fusion from the front is a lot easier. I hate going out of the house with this stupid neck brace. People stare like your a freak. I hate attention anyway especially this kind. How is it when your in a car being driven? When I'm the passenger I have a hard time riding because I have to use my muscles to hold my head in place even with the brace on. My neck gets sore and tires from it. Hope your doing better. I have about 2 more weeks until I see my doctor. I'm hoping they see fusion or something, but I remember the nurse said at 6 weeks they really don't see any fusion it's too early. They usually xray to see if the hardware is still in place. I'm sill hoping they see something fusing though!

 
Old 11-16-2012, 09:28 PM   #29
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Re: c1 c2 fusion headaches normal?

They went through the back of my neck....pretty large incision. Thanks for the sleeping tip. I have a tip for you in the car. I use a neck pillow...like the one you use on a airplane. It is called the evolution pillow....it is made of memory foam. I use it while sitting on the couch too. Are you still taking pain medication for your neck? I have tried to cut down but I don't know what is realistic for recovery. I bet you have your hands full with the kids....do you have someone helping you? Your chances of fusion are better than mine, I think you will be fine. Did you have a orthopedic surgeon or a neurosurgeon? I hate going out too with the brace. I have found a couple neck gators that cover it pretty good.....I guess it is good that it is winter. Do you live somewhere cold?

 
Old 11-17-2012, 01:11 PM   #30
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Re: c1 c2 fusion headaches normal?

Steveemed, I am expecting to be diagnosed with bow hunters syndrome this week going by all test results so far. I have had it for a minimum of 11 years if it is it. I haven't seen anyone else online so far who has it so it's great to see this conversation with someone else who has it

 
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