I’m considering making the leap and finally getting this done. It’s a surgery no less than 4 neurosurgeons has recommended, but I’m still leery. 2 docs said I could ride and 2 said no. I’m very confused about what I want to do, as this surgery might not even make my pain better. Any personal stories and advice is apprecaited.
If you had this surgery, were you able to ride again? I’m 16 y/o, active, and needing this surgery for CCI and Chiari Malformation.
grandprixer, I haven’t had this fusion surgery and I have a few years (well more than just a few) on you but wanted to share a few thoughts.
A good friend of mine, when I was talking to her about my progressing scoliosis and increasing pain, told me that surgeries such as this are elective. You can elect to do it or not. You might, at this point in your life, choose not to. At some point, the pain and quality of life may be such that you decide you do want to do the surgery. Only you will know when you reach this point.
My take is not as much could you ride but should you ride and the risk if you do come off.
I would start by taking riding out of the equation for a moment. How much pain are you in? Are you willing to assume the risk that surgery may or may not help? It is a cr*p shoot and definitely not an easy choice. I know my surgery didn’t have the outcome I dreamed of but in many ways it was still a win as I am now pain free.
I get the feeling that riding is important to you. I’d be asking the Drs about the risk to your fusion if you do come off the horse you are riding. Damaging the cervical spinal cord can be pretty devastating as I am sure you already know. Would this be a risk you want to take? Any rider can come off any horse at any time 
Maybe driving is an alternative to riding? What riding discipline do you participate in now? How do your parents feel about you getting the surgery and riding afterwards?
Girl, this is really a hard one! At 16 with 4 neurosurgeons recommending the surgery it is really hard to venture an opinion. But I will tell you my experiences.
First, I have a cavalier king charles spaniel with chiari and syringomeylia. I know without gabapentin she is in pain, but the gabapentin seems to control her very well. I don’t know what your symptoms are with the chiari and is this the main concern to the docs?
Second , I am much, much older than you and have 2 herniated discs in my neck with some nerve pain down to my right hand. I was sent for PT and while doing that I saw a total of 3 neurosurgeons and an orthopedist. The orthopedist told me to immediately stop riding and Never ride again!! But she thought riding was so dangerous and basically thought I should take up riding a couch. For me, at my age to have surgery, would probably mean more surgery down the line because they only wanted to fuse c5/6 and something above or below would possibly give within 10 years after. What I am trying to say is “most” doctors are going to advise not to ride because it is deemed dangerous because of the risk of falling. The surgeon I would have chosen if I opted for surgery said “live your life” it is all a risk.
I believe only you can truly decide if you want to ride after. I have known people who have needed neck surgery after a fall…so basically its all risk and you can minimize it if you go back to riding by choosing wisely which horses to ride to reduce your chances.
Not sure what else I can tell you not knowing you. But I hope this helps a little.
I can tell you about mine. C3/4, C4/5 , C6/7 with compression but I only needed C4/5 and C6/7 for the fusion. I opted to go to the best scoliosis Dr. in the country and traveled to Maryland, Dr. Paul McAfee to get it (after he did my husband multi level lumbar with movable rods and spacers).
We discussed at length that what we needed to do was make sure I could ride. We opted to use a devise that could be implanted with screws instead of the cadaver bone/ or my bone which takes much longer to heal.
I was out of the collar in 6 weeks, back to work in 3 months but didn’t get back on my horse for a total of 6 months which was probably too soon, but my horse was GP and I felt safe as my first horse to get back on.
Don’t rush it! My Dr. put it this way…“do you like feeding yourself?” That is how serious the healing needs to be.
In contrast, someone else I knew when the bone route and had to be in the collar for 6 months, which means no driving and very restricted for movement.
I am 2.5 years out and have nerve damage for putting off my procedure, I am about to be nerved (like navicular) So bear that in mind when you are putting off your procedure.
As for riding, I bought a safe youngster (duh!!) and we competed Training and First level this year and onto 2nd and 3rd next year.
Horse people are resilient. We are a different breed.
I was just going to ask if you were anywhere near Maryland so you could consult with Dr McAfee mentioned above. Not only is he insanely good he is very reluctant to operate unlike most surgeons. Bonus is his goal is always to get you back to doing what you want to do as opposed to telling you what you can’t do. It is thanks to him that I havent had a fusion yet and for that I am very grateful but also know exactly who will be doing my fusion if I ever decide the time has come.
I had a ruptured disk at C5 & C6. The nerve pain was awful and constant. I eventually got a “Prestige” disk instead of a fusion. The factor that moved me to chose the device was the option of later getting a fusion if it didn’t work. Thankfully, 8 years later, the device has spared me a long recovery and stress on the adjacent joints. Recovery and return to riding was immediate … 2 days after surgery.
That’s a big decision for 16 yr old. Based on what little I know of this syndrome, the surgery is probably necessary but may also leave some complications. Fusing four levels will likely leave you with some range of motion/turning your head issues, but those are probably less important than what issues may be solved by the surgery. I hope you discuss with your parents and make the best decision for you. You are young and otherwise healthy so much more likely to have a good outcome!
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