Yesterday I had my follow-up appointment with my NS. I came prepared with my husband and MRI films.
According to the MRI films as well as the NS I not only have Chiari Stage 1 I also have a degenerative disk disease as well as herniated and disks bulging at multiple levels in my back.
As for the Chiari...
There is a Chiari malformation with tonsillar herniation about 8mm. There is no evidence of a tethered cord or a syrinx. He is recommending a suboccipital craniectomy and C1 laminectomy for decompression.
As much as I'm on the computer when it comes to researching Chiari I draw a blank because I can't find anything that talks too me instead of at me if that makes sense.
I have degenerative disk disease too. I had my surgery on 16 Jul last year. It was hard for me to make the decision to do it. I would lie awake at night and think about what was the right thing to do - I felt kind of damned if I did and damned if I didn't. The thought that helped me the most was knowing that, when I decided to go ahead with the surgery, I was doing what I could to free myself of the worry of not doing anything. The surgery made some things better for me. I'm no longer dizzy and have vertigo all the time, the fogginess in my head is gone, and I don't have headaches. I'm improved but not perfect. I still have some problems from my slipped disks in my lower back and I hope to get that fixed too. If I had known how much better I would feel after the Chiari surgery, I would have done it sooner. Even though the doctor told me that it wasn't elective; that I had to do it, I still put it off for awhile, so I understand how tough a decision this is. I had a suboccipital craniectomy with occipital cervical fusion. I didn't find the surgery or the recovery too bad. At first I did a lot of sleeping and just resting. I'm lucky that I was able to do that and didn't have to rush back to a job. I've had to adjust to having my neck bones fused together. I do have some movement in my neck, but still needed to make some adjustments. Now it seems kind of normal to me. Remember, nothing is ever as bad as we can imagine it to be. We all respond differently and recover differently after this surgery. It's good to be informed. Just know that a lot of the information on the internet is old. There have been lots of improvements in this surgery and the success rate is much improved. I don't have a zipper scar; my doctor does a different procedure and he puts all the stiches on the inside and sterry strips on the outside; my scar is almost invisible and it appears that it will totally go away. Different surgeons do different procedures, so it is good to research and quiz your doctor before the surgery. Most of the stuff on the internet is lecture material, so I found the talk with my doctor more informative. I found a list of about 20 or so questions on the internet to ask my doctor before the Chiari surgery. He took the time to go over all of them with me and explained what procedure he would use and answered all my questions. I was there so long, he was evening giving me food LOL! I'm lucky that I found a good, competent, passionate, surgeon; I hope yours is too.
I think we know when it is time to have the surgery....for me it was when the fear of the symptoms overcame the fear of the surgery. I had really serious basilar invagintion and I started having a lot of trouble breathing and swallowing and that was scary. To have the surgery is such a personal decision. Even though my husband was supportive, he just couldn't help me with that.....I had to make the decision by myself. When I finally came to the conclusion that it was the right thing for me to do, I had made peace with it and most of the fear of the surgery went away. I went to the hospital that morning with the thought and expectation that my life would be better after the surgery. I didn't expect to be perfect afterwards and I'm not. But things are better so I made the right decision. I'll keep you in my thoughts and prayers as you and your family go through this difficult time. Hugs and blessings to you.
but at the end of the day, there isnt any amount of info thats going to make up your mind for surgery, you dont have to do this now, it depends on your symptoms,
imsurprised that the NS wants to operate due to no syrinx or tethered cord,
I have degenerative disk disease too. I had my surgery on 16 Jul last year. It was hard for me to make the decision to do it. I would lie awake at night and think about what was the right thing to do - I felt kind of damned if I did and damned if I didn't. The thought that helped me the most was knowing that, when I decided to go ahead with the surgery, I was doing what I could to free myself of the worry of not doing anything. The surgery made some things better for me. I'm no longer dizzy and have vertigo all the time, the fogginess in my head is gone, and I don't have headaches. I'm improved but not perfect. I still have some problems from my slipped disks in my lower back and I hope to get that fixed too. If I had known how much better I would feel after the Chiari surgery, I would have done it sooner. Even though the doctor told me that it wasn't elective; that I had to do it, I still put it off for awhile, so I understand how tough a decision this is. I had a suboccipital craniectomy with occipital cervical fusion. I didn't find the surgery or the recovery too bad. At first I did a lot of sleeping and just resting. I'm lucky that I was able to do that and didn't have to rush back to a job. I've had to adjust to having my neck bones fused together. I do have some movement in my neck, but still needed to make some adjustments. Now it seems kind of normal to me. Remember, nothing is ever as bad as we can imagine it to be. We all respond differently and recover differently after this surgery. It's good to be informed. Just know that a lot of the information on the internet is old. There have been lots of improvements in this surgery and the success rate is much improved. I don't have a zipper scar; my doctor does a different procedure and he puts all the stiches on the inside and sterry strips on the outside; my scar is almost invisible and it appears that it will totally go away. Different surgeons do different procedures, so it is good to research and quiz your doctor before the surgery. Most of the stuff on the internet is lecture material, so I found the talk with my doctor more informative. I found a list of about 20 or so questions on the internet to ask my doctor before the Chiari surgery. He took the time to go over all of them with me and explained what procedure he would use and answered all my questions. I was there so long, he was evening giving me food LOL! I'm lucky that I found a good, competent, passionate, surgeon; I hope yours is too.
I think we know when it is time to have the surgery....for me it was when the fear of the symptoms overcame the fear of the surgery. I had really serious basilar invagintion and I started having a lot of trouble breathing and swallowing and that was scary. To have the surgery is such a personal decision. Even though my husband was supportive, he just couldn't help me with that.....I had to make the decision by myself. When I finally came to the conclusion that it was the right thing for me to do, I had made peace with it and most of the fear of the surgery went away. I went to the hospital that morning with the thought and expectation that my life would be better after the surgery. I didn't expect to be perfect afterwards and I'm not. But things are better so I made the right decision. I'll keep you in my thoughts and prayers as you and your family go through this difficult time. Hugs and blessings to you.
I had the same surgery your NS is recommending. I too have disk issues..I had 1 fusion b4 the decompression and 1 a yr later..I too, agree with Jolene ..I think the 2 go hand and hand.
How are you feeling about this??? It is very overwhelming....We are here for you!!!
It comes in waves, at times I can and will joke about how "my brain is so large my skull can't contain it" and all my husband can do is shake his head and say, "yes, it's true." Then on the flip side there are times where it scares the daylights out of me.
I'm tired of hurting. I'm tired of being tired and I'm tired of the headaches.
Now, I have no problems with the actual surgery, I don't know why, I can't explain it. What concerns me is the recovery and whether or not my insurance company will cover it. So it's the mundane things that make me nervous.
I had bulging disks too. I did have the decompression surgery done first. Then they fused C5 & C6 11 months later. Even though it sounds like bad news, it is good news that you don't have a syrinx or tethered cord. Those complications really make things more difficult. I would consider the decompression to maybe help with the disks, too. Keep us posted!
I was concerned about the recovery too. I didn't want to wear a collar aro9und my neck and since I was having fusion done, I knew I would have too. I was more concerned about the things that make me claustrophobic than I was the surgery. During the surgery, you are so asleep, so I know what you mean. I just told them to wake me when it's over. To get over the fear of the surgery, I practiced wearing the collar before I had the surgery. The recovery can be o.k. too; mine wasn't bad.....it's great you think positive about the surgery.....just add the recovery to those thoughts too.......and.....just concentrate on how much better your life can be after the surgery!
Hugs
Shirley
Kajosmom said:
Thank you Lori,
It comes in waves, at times I can and will joke about how "my brain is so large my skull can't contain it" and all my husband can do is shake his head and say, "yes, it's true." Then on the flip side there are times where it scares the daylights out of me.
I'm tired of hurting. I'm tired of being tired and I'm tired of the headaches.
Now, I have no problems with the actual surgery, I don't know why, I can't explain it. What concerns me is the recovery and whether or not my insurance company will cover it. So it's the mundane things that make me nervous.