Cervical disc fusion

[KerriC1]

Hi all. I have a neurosurgeon appt Thursday (not a chiari specialist) for the 3 herniations I currently have. 2 of them are significant and are causing nerve compression. I also have CCI and have been told cervical occipital fusion would probably be necessary in the future.

My question is if I go ahead with the disk fusion would it further damage the CCI? Or would the cervical fusion be he better option altogether? I'm just looking for opinions from fellow chiarians simply because everyone here is honest about their progress both good and bad. And Drs usually sugar coat things. At least that's been my experience.

I'm still a little concerned about the surgery site as well. Just haven't had the chance to talk to a specialist about it as of yet.

I hope everyone is doing well. I'm gonna try to get back on here more often, it's just been a really rough few months

[lasel22]

I'm sorry you had to go through that. I feel annoyed at this doctor for you. I know the feeling these types of doctors give us as patients and its not a good one. We've already been through so much we dont need to see someone rolling their eyes.

Are you going to see a new neurologist? The tremors are probably coming from the instability. I get tremors too, they get worse the more i do.

I think if you could find a NS who is very knowledgeable regarding EDS that would be the way to go. The problem is finding one.

I hope your appointment on Monday goes ok, I hope they at least listen to you. So far I haven't met a neurologist I like, if they cant figure things out they just assume you are emotion and unstable (which we are :) ) and try to medicate.

[KerriC1]

Thank you both! Yes this was disappointing to say the least. He wants me to go to neuro rehab and eluded to ms I believe....

Lasel, how bad are your tremors? Mine have gotten to the point that daily tasks have become challenging and I'm scared I'll end up in a wheelchair.... I saw my primary care doc and while examining me he lifted my leg high and made my leg tremor and shake so badly that I'm pretty sure I freaked him out.... at least he's trying his best

The good news is that both these Drs are on the same page as far as no surgery at his time for the discs. Which leads me right back to chiari/instability/high ICP....

Your surgery is soon right? I'll be praying for you

[lasel22]

Hi Kerri, my surgery is up in the air right now as my insurance company initially denied authorization. My doctor had a peer to peer with someone from the insurance company and i am waiting to hear back. From what i understand from others who needed a fusion, denials are not that uncommon and appeals are often necessary.

That's good news that both doctors don't think the disc herniations are the problem. At least you can just focus on the instability.

I'm sorry the neurologist appointment was disappointing, but I'm not surprised. Are you going to neuro rehab? What is that? Physical therapy? I can't even do PT. Once I start trying to do any type of exercise or stretching, even minor neck strengthening exercises, I start to feel bad.

My tremors don't seem as bad as you describe yours.  If I am laying on my back and I do a straight leg raise, I can only go to about 45 degrees and my legs shake when I try to keep it up. I also tremble when I bend my legs to pick something up and get up. It's like I feel a shaking through my body. I think it is from muscle weakness. My hands will shake if I use my arms a lot too, but not that bad. When I was in neck traction up to 25-30 pounds I was able to raise my leg up to 90 degrees and keep it there, no shaking. So my strength improved dramatically and the shaking disappeared.

[KerriC1]

I'm sorry you're in surgery limbo. What a terrible position to be in. You'd think he insurance co would understand when a specialist says yes his is needed...

I'm unsure exactly about the neuro rehab. All I know is he specializes in brain injury, so who knows where they're going with that.

I feel terrible for saying that I'm comforted by your description of your tremors. It did put my wandering mind at ease a bit knowing it more than likely is due to instability. I'm bothered by the nonstop tremors of my hands and walking has become as bad as pre op.... thank you for sharing your experience

[lasel22]

Hi Kerri, I hope your appointment went well, if it was today. I was wondering if a chiari specialist who also is familiar with EDS would know which surgery should be done, or rather, which one should be done first.  I would think having a craniocervical fusion first might add even more stress to the already herniated disks, but that's just a guess.  How far down are the herniated disks, would an option be having both done at the same time. Say, if it was c3 and c4 would a chiari specialist know if a craniocervical fusion through c4 is the way to go??

I hope your appointment went well and you got some answers.

[KerriC1]

Hi guys, thank you for the advise. And I apologize for not getting back sooner. The appointment did not go so well. He was a local NS and I went for the disc issues but he kept going back to my brain. Over and over. And basically shamed me for going out of state to have decompression done. But my hand and leg tremors bothered him and he wants me to get a new neurologist...... he didn't really get into the herniations too deeply.

The cervical herniations are c4-5 c5-6 and c6-7. I didn't appreciate some of his mannerisms. He even rolled his eyes when I told him I have eds and instability. He said I may just be hypermobile..... and here's the reason I went out of state. So I have another appt Monday for an opinion and then contacting a specialist also.

[selmaS]

Sorry you had that experience.....I too went out of state and would do it again in a heartbeat.

[selmaS]

Hi KerriC I have not had this surgery so can't give first hand knowledge on any of it....I was told I would need a fusion due to CCI too...but have not had the need to do it yet.....
Ask if the fusion they are considering doing will affect your ROM and if so how much.....
How close to the CCI issue are the 3 herniations? What disks are involved?

Keep in mind if you have CCI you also have EDS and recovery may be slow due to that.....