Im a 55 year old male and was diagnosed with chiari a few years ago, I do alot of reading on here but im at the point to write to you, Up until a few years ago i had no real issues but now they have begun, I have the headaches and the tingling in my hands and feet, If i get up fast i get dizzy my cordination is sloppy sometimes but i manage. Spoke with my doctor again today and they have been telling me to have surgery, He says i have a C1 skull fusion and a angulation of C2 and C3 joint with basilar compression the dens being retroflexed, Said looks like an early edema in upper cord, Not sure what that means but cant be to good, i also have sleep apena. I have the chiari pushing on one side of the spinal cord and my spine turns inward and puts pressure on the other side so i have restrictions from both sides, The doctor said my spine is not connected to my skull?/ didnt think that was possible, He wants to do a decompression and fusion on a Monday( not this week)(no date set yet)and then on a Wed go back threw my nose and grind away part of the bone turning into my spinal cord, it would be one surgeon doing one procedure and another one doing the other, I would be having this done in manhattan ny threw cornell, Is it dangerous having two big procedures done so close together? Any input or advice would be appreciated because im very confused and dont have an answer on what to do, I would like to not have the surgery and live with the pain but he said as it progresses it will or may get worse and its not reverseable, less then a year ago i had a full hip replacement,
Good morning Pepsican,
I am so happy you are reaching out on this site. This is a great website I am certain you will find some of the answers you are looking for here. I am also a new addition to this forum and I would like to share a bit of my experience if you don’t mind reading a bit. I too have a C1 fusion. The way my Neurosurgeon explained it during my initial consult this was my body’s (mother nature/god’s), way of self-preservation. Had this fusion not occurred I most certainly would have died at birth. Round 1 me!!! I have been fighting Chiari ALL my life in one way or another. I was born in 1969 and ultimately diagnosed in early 2005. I lived with nearly all of the symptoms that I have seen described on this site i.e. headpain, (I refuse to call them headaches because this does not do it justice, a non-Chiari sufferer can simply take a Tylenol or Advil for relief) vertigo, numbness, ringing, etc…along with a myriad of other unexplainable phenomenon. Please, Please, Please if you are contemplating surgery do extensive research and DO NOT just take the word of the one or two Dr’s that they can “fix” you. I am sure I will take some heat for that comment but my reasoning is simply this. In most decompression surgery’s (not all), the surgeons are guessing, although an educated and calculated guess, about how much material to remove to restore normal CSF flow. I keep reading about people on here who shortly after their surgery have their symptoms return. It seems more often than not, and the symptoms return to an unusual extent worse than before their surgery. Several members on this site have reported multiple surgeries and are still dealing with Chiari related complications. Additionally, I am not sure if I mentioned this anywhere else but my herniation was 11mm. Not that this is significant as Chiari is asymptomatic and presents differently in nearly everyone. There are however, some commonalities.
There are great Neurosurgeons out there doing awesome work. But the fact is there are just a handful who specialize in or only do decompression. What’s more still even fewer using the latest Doppler type imagery technologys in the OR. I have attached a link that has a plethora of Chiari related videos
http://www.chiariinstitute.com/Videos/index.html
This research is long and arduous and when coupled with the frustration and isolation due to the nature of this beast we call Chiari someone can easily become overwhelmed. I would love to talk in person or feel free to email me directly so that I may share some of my tribulations and successes. This may or may not help but I am open to the opportunity. There is an email link on our homepage please feel free to contact me directly. (Apologies in advance if this breaks forum protocol) Keep the faith my brother you can beat this!!!
Dennis
I would seek out a second or even a third opinion. It does sound like you have issues that could get worse if not corrected however I'd make sure you felt completely comfortable that you needed surgery before scheduling anything. It sounds like you aren't yet at a point where you want to make that decision so getting more information should help! Keep us posted!
I just hear about many people going threw decompression surgery and there no better for it, To me a surgeon wants o operate because thats his answer and thats what he does, I need to know its in my best interest, Anyone have anyone to see in NY
Pepsican, I think the surgeon who is telling you it’s time for surgery is probably right. The Chiari is one issue, and just a decompression alone would not fix your symptoms- because like you said you also have compression to the front of your spinal cord/medulla (sharp clivo-axial angle), a protruding/ retroflexed odontoid, and then stretching of the cord from the effective dislocation of your head from your neck (yes that is real). The cranial cervical instabilities need to be fixed. You already have apnea and that shouldn’t be taken lightly, some people with these problems become paralyzed and need a vent to breath.
Please do some research on the best surgeons to fix your Chiari and instability. Drycare is right that not all brain surgeons do well with this surgery. I am not familiar with who is at Cornell, and they may be amazing with these surgeries for all I know, but look into it. I know that The Chiari institute in Long Island does a lot of these surgeries and has a good reputation. There is also Dr Henderson in MD, Rosner in NC, and Theodore in AZ.
There are some great videos about the how and why the instabilities need to be fixed. I will attach a couple of them here, but they are all at CSFinfi.org, under videos, under DC or Metropolitan Area.
http://csfinfo.org/research/csf-funded-research/csf-ehlers-danlos-syndrome-colloquium/
I don’t know if it’s unusual to do the decompression and fusion in one surgery and the odontoidectomy days later…
I’m sorry you are having symptoms and facing this. I hope you find the best surgeon.
Jenn
I want to thank evryone for there help and imput, What you say here makes a big difference on how i feel and think so i thank everyone for that, I was always in good shape but gained weight over the last few years, so i think that should be my first goal to lose weight, im not sure the right thing to do i dont want to rush in to something but yet i dont want to wait to long where things get worse that arent reversible, im not very good with making decisions let alone the right ones, Kenny
Lately i also find myself falling a sleep if im watching TV or at the computer i get real tired real fast and my eyes feel like shutting and sleeping is this also common?
Ok thanks i also noticed lately that i get a sharp pain in the middle of the upper part of my back and maybe to the left alittle bit mostly in the back but some pain also in the front left anyone else get that kind of a pain?
I agree that you are probably not getting quality sleep, and this dangerous. People with apnea fall asleep during the day, and they don’t get the amount of rem sleep to be fully functioning. I have the upper back pain that radiates to my left shoulder, neck, and sternum.
And that back pain is all from the chiari? anything to help that pain besides surgery
I had a decompression last feb, and as far as I know the Chiari is “gone” so I think this pain is from the instability. Im waiting to see Dr Henderson in a couple of months to get a diagnosis and hopefully a surgery date. This upper back is relatively new, last two months or so. Arnica gel helps quite a bit- I recommend it. You can get it at Walmart or Walgreens. 
Im thinking about getting my test CDs and making an appt with Dr Henderson i wonder how long a wait to see him?
The last I heard he’s scheduling about 8 months out.