Anyone had multilevel cervical spine reconstruction surgery?

Good morning I am in the midst of recovering from an extensive Multilevel revision cervical fusion Naples, Florida. We have two young surgeons that relocated here from John Hopkins, a husband and wife team, and they operate in tandem. Mine was the 3-4, 4-5, 6-7. And was six hours long. Luckily, mine was done anterior. The reason mine was longer is there was a ton of scar tissue it took the ENT almost an hour to get through it all . Some of the new newer techniques are not to give the patient a collar which really has helped me start to strengthen my muscles sooner . The recovery is not easy, but I have to say it’s not horrible either. I was struggling with pain until about the six week mark and now the pain is mild. Swallowing issues are a bit of a struggle however you can make or have someone help you make smoothies I’d put protein powder in it with the extra calories and nutrition. I lost weight during the this so I am working with a functional integrative dietitian who’s giving me tips of certain protein powders, etc. to use. I could not swallow solid food for about a week… Don’t be alarmed if this happens. Still have a bit of trouble, swallowing large pills, but body pill cutter and was also told to turn your head to the opposite side of the incision if you’re having trouble swallowing any pills etc.

I’m sorry that you’re going to have to go through this but also happy that you’re going to have it done and it feels as though you’re going to be in good hands. I’ll be available if you have any questions at all during your recovery I would be more than happy to help you.

Leigh

@leigh17
Hi Leigh 🙂
Thank you so much for sharing all of this — it’s incredibly helpful and reassuring to read your experience. I’m really grateful you took the time to explain everything in such detail.
The info about swallowing issues, the ENT involvement, and how the newer recovery methods help you regain strength sooner really gives me a better idea of what to expect. I’ve been pretty anxious about the recovery, so hearing that it does get better (even if it takes time) definitely helps calm my nerves a bit.
If you don’t mind me asking — what was the scar tissue from in your case? I didn’t realize that could add so much complexity to surgery, and it sounds like it made your procedure even tougher.
Truly appreciate your kindness and encouragement. Wishing you continued healing and strength as you keep recovering!

— Heather

Hi Heather,
I had similar symptoms to you and recently, on November 24, had a C3 through C7 fusion. Please feel free to ask me anything. I am only three weeks out of surgery on Monday, so I can only speak to the early post surgery experience. Thinking of you,
Cariña Using

@cusing oh and also, mine was done anteriorly. I was warned about possible difficulty swallowing it first, but I have had no issues and was eating oatmeal by the second day. The first week was probably the hardest, but manageable. I was in the hospital for two nights, but if I had it to do again, I would’ve stayed longer because they are much more able to manage any pain, but I really wanted to get home. It was definitely not the worst pain, but initially something that you need to stay on top of. (Don’t get behind on pain meds and take them on a regular schedule initially. I had zero pain from the incision or in the front of my neck. The only pain was really my trapezius muscles, and it feels similar to a pulled or strained muscle. After the first week, I have only used Tylenol, if that helps you see how quickly the pain improves. They also prescribed me a bone growth stimulator, which is supposed to help the fusion heal, which I highly recommend. Out-of-pocket, they are very expensive, but I have Ehlers Danlos syndrome, and many insurance is cover it if you have a multilevel fusion and any underlying condition. They don’t know why my neck was the way it was, but have guessed that it is either due to hEDS with cervical instability or years of Botox in my neck for chronic migraines. I hope that gives a little bit more information, but again feel free to reach out or find me on Facebook under Cariña Trujillo Using and message me there. ❤️

Hey there! I’m 56 F and just had ACDF C5-6 and 6-7 done within a few mos of each other. It’s been interesting! My surgeon took my old hardware out and put a longer plate in to span C5-7. I’m 10 days into this recovery and it hasn’t been as easy as the first one.

Lesson learned: Observe restrictions and be patient with the healing process. Some days are tough, mentally and otherwise, especially if you are used to being physically strong and active. You’ll bounce back, but not if you push the envelope. Trust me! I’m paying for my impatience right now! Let family, friends, and your kiddo help you even if it hurts your pride and you feel like a drag. Don’t go back to work before your body is ready. Listen to pain and fatigue and make yourself stop and rest. Healing takes a lot of energy, but the human body has an amazing ability to repair itself if you let it! Keep your chin up (literally and figuratively)! Pls reach out if you need a pep talk or have questions about my experiences.

I had a fusion and bone spurs shaved in 2020 I just had a second surgery to replace a disc rt above the fusion and I’m having more complications now than I was before surgery. I had a post surgical MRI done recently and my pcp says nerves are pinched. I haven’t returned back to work I see the neurosurgeon in 2 weeks he’s just been telling me I should be fine. This whole thing is ruining my life I lost my job and I’m about to lose my house I have 3 kids and I bought this place myself. I wasn’t prepared to be out of work for this long

@chasitie
I’m really, really sorry you’re dealing with this. Reading your story honestly makes my heart hurt for you. This is exactly the situation so many of us are scared of — doing the surgery hoping for relief and ending up in more pain and more stress, while life just keeps piling on.

This is what I’m afraid of too. At some point you have to ask… do the risks outweigh living every day in constant pain with no real quality of life? It’s such an impossible spot to be in, and it feels like doctors don’t always see how much is at stake outside of the MRI.

Being told “you’ll be fine” doesn’t help when you’re clearly not fine, especially when your job, your home, and your kids are all affected by this. That’s real life.

You might want to look into short-term disability, FMLA if it applies, or even Social Security Disability — especially if your doctors can document nerve issues and that you can’t work right now. A hospital social worker or patient advocate might also be able to help point you toward some kind of financial or emergency support. You shouldn’t have to figure all of this out on your own.

Just know you’re not alone in this, and you’re not crazy for feeling overwhelmed. I really hope your surgeon listens to you and takes this seriously when you see him. Sending you so much strength — you truly deserve better than this.

@steelme43 I’ve looked into everything and there really isn’t any help as of yet. I recently applied for SSDI you have to be out of work for a year. I paid for LTD but a new company took over and I didn’t meet the requirements of working there long enough

Although I had my neck/cervical surgery, your account parallels mine. 2001 I had posterior neck surgery on C2-C7 . The hardest part fort me, was wearing the MIAMI J COLLAR for 3 months, couldn't drive, home from work, etc. It really helped, as time went on there was a huge reduction in pain. No PT. About 2 years later, pain started again, this time an anterior surgery was performed on C-2 to C-7, disks were removed and cages implanted with a titanium rod which gave my neck a lot of support. There are many other joint replacements that occurred, but that is a story for another day. Good luck, I am sure it will help with your condition. Just the pressure off the spinal cord will offer great relief.

@morkat

Thank you for sharing this. That’s exactly where I’m stuck—being scared of surgery but also scared of continuing to live with this level of pain and limitations. Taking the pressure off our spinal cords seems to make the most sense before more dangerous damage occurs. Glad you found relief. I really appreciate you taking the time to respond.