Hi, I would just like to reach out to others who have had decompression and cervical fusion. I have not been able to find many people who have had both done. I am 6 months post op. I feel better than I have in years. However, my neck is stiff and I have lost a great deal of my range of motion. I was just wondering how other people have made out and what I can expect as I go forward in my recovery. I am still doing physical therapy and working as hard as I can to get back more ROM.
Keep me posted on the as I am currently in the process of scheduling neck surgery for spinal cord compression. Once this is repaired I can the talk to the Dr about decompression for CM1. I have been curious about the healing process and how much of the symptoms are from which issue.
Bill Zern has had Craniocervical Fusion & CM Surgeries and is a great guy.
If you send him a message I am sure he would answer you.
By any chance do you have EDS also?
Make sure you discuss with your neurosurgeon what to expect in terms of return of range of motion. Occipito-cervical fusion(which is what most Chiari patients who have a fusion undergo), eliminates the Occiput-C1 and often the C1-2 joints, eliminating >50%(and sometimes close to 90%) of the rotational range of movement. Often, additional mirrors are required for driving, you tend to move your shoulders to look around, etc. However, flexion extension should only be minimally reduced(10% or so once PT is completed).
The neck surgery recommended for me is at the c6-c7 to repair cord compression. He said something about going in from the front and putting a rod and bracket lifting the bones upward. I’m not sure if this is considered fusion. He also talked about taking stem cells from the hip area to help keep the parts intact. Does this level surgery affect motion that much? He said it may feel stiff or mildly limited temporarily but will it be permanent?
This procedure will enable us to better judge if decompression of the brain is truly needed. He said he would not consider decompression for CM1 at this time because it is too dangerous to put me face down on the table with the cord compression.
I began having severe Chiari symptoms but wasnt diagnosed. This was 2010. Things progressively got worse for me and in 2011 the Neurosurgeon said i needed a cervical fusion at C3-4 and that would fix everything wrong. By February 2012 i was in severe pain. Another MRI from another Neurosurgeon said I had Chiari And I needed Decompression surgery. I am now 7 months Post Op and while my headaches in the back is gone I still suffer from Chronic Neck pain and even to the shoulders. I also still suffer from alot of nausea other things. I have decided that once the neck and brain have been operated on, you will find some relief but some of the problems will most likely be here forever to live with. I take 15 pills a day to help combat my symptoms of which some are muscle relaxers, Neurontin, pain meds. I do hope the best for all who have had both surgeries 
KSUE said:
I began having severe Chiari symptoms but wasnt diagnosed. This was 2010. Things progressively got worse for me and in 2011 the Neurosurgeon said i needed a cervical fusion at C3-4 and that would fix everything wrong. By February 2012 i was in severe pain. Another MRI from another Neurosurgeon said I had Chiari And I needed Decompression surgery. I am now 7 months Post Op and while my headaches in the back is gone I still suffer from Chronic Neck pain and even to the shoulders. I also still suffer from alot of nausea other things. I have decided that once the neck and brain have been operated on, you will find some relief but some of the problems will most likely be here forever to live with. I take 15 pills a day to help combat my symptoms of which some are muscle relaxers, Neurontin, pain meds. I do hope the best for all who have had both surgeries :)
I have almost 45 to 50 degree rotation on each side when laying down. However, when I sit up or stand, I cannot achieve that much rotation. Can you tell me how to achieve it when standing?
Dr. Trumble said:
Make sure you discuss with your neurosurgeon what to expect in terms of return of range of motion. Occipito-cervical fusion(which is what most Chiari patients who have a fusion undergo), eliminates the Occiput-C1 and often the C1-2 joints, eliminating >50%(and sometimes close to 90%) of the rotational range of movement. Often, additional mirrors are required for driving, you tend to move your shoulders to look around, etc. However, flexion extension should only be minimally reduced(10% or so once PT is completed).
Yes, I was fused from C1-C5, as well as having the decompression surgery. It took me a while to get used to the changes in range of motion, but I hardly notice it now, although I do have to use my mirrors more when driving. My surgeries were in 2008. I was mostly "cured" for four years (with occasional bad days), but I've been having symptoms again lately, though I'm not sure yet if it's from the neck or the Chiari or something else.
What symptoms are you having again. I do feel really good considering what I was before. It is just nice to talk to people who have gone through the same thing. Thank you for your response.
summerofsoaps said:
Yes, I was fused from C1-C5, as well as having the decompression surgery. It took me a while to get used to the changes in range of motion, but I hardly notice it now, although I do have to use my mirrors more when driving. My surgeries were in 2008. I was mostly "cured" for four years (with occasional bad days), but I've been having symptoms again lately, though I'm not sure yet if it's from the neck or the Chiari or something else.
I had a C5-C6 fusion just over a year ago. Range of motion was reduced, at most, about 10%.
From what I researched, doing one level can result in up to a 20-25% reduction in RoM, two levels can be closer to 50% and 4 levels (which is what is affected on me) is closer to 90%. My NSs opinion was to do the one that was causing most of the issues and revisit if I still have pain or problems. It was a good tactic. I am thinking of digging out the TENS unit for the first time since surgery because I'm having a little muscle stiffness, but overall, I'm pleased with range and surgery outcome.
I have RSD in my left leg and unfortunately, it has spread to my hands as a result of surgery. If I knew that going in, I still would elect to have the surgery, as cold and twitchy hands surely is better than 8/10 pain in my neck and shoulders most days.
I'm having bad headaches, including migraines, and neck pain. I'm also nauseous a lot. I'm having pins and needles in my face and fingers, and swelling around my neck. I also have neurocardiogenic syncope, and that seems to be much worse two. I've fainted two or three times in the last week, where for a while I had gotten so that I wasn't fainting at all, except maybe once a month when I had my period.
schbud said:
What symptoms are you having again. I do feel really good considering what I was before. It is just nice to talk to people who have gone through the same thing. Thank you for your response.
summerofsoaps said:Yes, I was fused from C1-C5, as well as having the decompression surgery. It took me a while to get used to the changes in range of motion, but I hardly notice it now, although I do have to use my mirrors more when driving. My surgeries were in 2008. I was mostly "cured" for four years (with occasional bad days), but I've been having symptoms again lately, though I'm not sure yet if it's from the neck or the Chiari or something else.
Hello,my name is Thomas. Feb 02 I had decompression and cranial / cervical fusion. I feel much better than I did before the surgery but that was 11 years ago. If you are young the possibility of a good recovery is high. If you are older like myself all that can be said is PAINKILLERS OR MOVE TOO COLORADO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
And what do you consider older? How have you manged with the range of motion? I am only 7 months post op and can't really complain about the pain and I am happy to say I do feel much better than before the surgery. I am just dealing with adjusting to not being able to move my head and my neck is stiff very often. I am 51 years old.
TOMTITANIUM said:
Hello,my name is Thomas. Feb 02 I had decompression and cranial / cervical fusion. I feel much better than I did before the surgery but that was 11 years ago. If you are young the possibility of a good recovery is high. If you are older like myself all that can be said is PAINKILLERS OR MOVE TOO COLORADO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Range of motion will get better over time. But too achieve the best range of motion, your going to push your neck muscle past your threshold of pain more the once. I'am not saying hurt yourself, you will experience that with out trying over the next few years! Use your shoulders and your hips to turn your head and then then use your neck muscles. It will become second nature to you over time and you will notice that you turn your head with your neck muscles more and more. And now the age factor!!!! I was 32 years of age when I, had surgery. I'am a very active person before and after surgery, some of my pain is from being this way!! I would say after talking too younger patience from ages 15 to 24 they do adapt better and have less or no pain than what I, see in older persons.
Thanks so much for your reply. I will keep trying and I wish the best to you.
TOMTITANIUM said:
Range of motion will get better over time. But too achieve the best range of motion, your going to push your neck muscle past your threshold of pain more the once. I'am not saying hurt yourself, you will experience that with out trying over the next few years! Use your shoulders and your hips to turn your head and then then use your neck muscles. It will become second nature to you over time and you will notice that you turn your head with your neck muscles more and more. And now the age factor!!!! I was 32 years of age when I, had surgery. I'am a very active person before and after surgery, some of my pain is from being this way!! I would say after talking too younger patience from ages 15 to 24 they do adapt better and have less or no pain than what I, see in older persons.