Help Needed With Estimate Cost For Cervical Fusion Or Chiari?

[diamondcut]

Can anyone please tell me if they have had cervical fusion for Cervical cranio Instability and/or Chiari Decompression surgery?

I have been recently dx wtih CCJ but my options in the UK for surgery ande help are not great!

I am trying to ask people who know about or had these types of surgeries so i can get an idea if i came to the USA just exactly what i am looking at as far as money to raise. I see on google chiari can be around $30-40,000.

But can not find anything on cervical fusion.

Has anyone been treated at the TCI or by Dr Fraser Henderson?

Many thanks

[Mytwogirlsrox]

My dad is having a c3-c7 fusion it's approx $40,000

[Mytwogirlsrox]

Not including recovery & rehab! That's the surgery, period!

[Katybug]

I don't know the answer to your question but you may want to join a nd post the same question on the Inspire Forum at www.ednf.org. I know several people on that forum have had fusions and chiari decompression with Henderson.

[diamondcut]

Thanks Katy and others, i have done that actually, it sounds like most surgical procedures are around the $40.000 mark.

Let me know how you get on with your angiograms i would be really interested to know.

[badhbt]

Hi there,

I had a C1-C2 fusion. I think mine cost about 70,000....that is what my insurance was billed. I am not sure if self pay would be a different cost. I stayed in the hospital for 4 days.

Hope that helps. Do you have instability?

Heather

[Katybug]

My CT angiogram was read by a Neurosurgeon right in front of me (well the brain part of it was) and I got a clean bill of health for my brain. Although, I have predominantly right sided migraines and all of my major veins, arteries, sinuses were hypoplastic on the right side which I find interesting. Neurosurgeon said it's normal for one side to be hypoplastic and the other to be dominant and that it is not the cause of any issues.

As for any suspicions of CCSVI, I haven't received the complete report from the radiologist yet, so I don't know what might be going on in my neck yet.

[diamondcut]

Thats very interesting Katy thanks, i hope maybe you do find some sort of answers.

Thank you Heather for the info, i have had a few people tell me different prices but at least it gives me some sort of idea.

Yes i do have instability, mine looks like it is the posterior part of my C1, its coming away from my skull and the gap or space is 3 times what is with in normal ranges. I have a partly retroflexed odontoid aswell as other tell tail signs such as plannus build up around the c2. My problem here in the UK is getting drs to do anything about it.

I have read up as much as i can on this subject and understand surgery is very drastic and dangerous but i think we all reach a point with our pots or eds that you have to take what options are out there.

How did your fusion surgery go? How are you doing now?

[lejones1]

A family friend saw Dr. Henderson and absolutely adored him and said he was very good about coordinating care with her doctors at home. He did a cervical fusion and also tethered cord surgery - I think she said it was about $80,000 but I believe that was for both. She had some complications in the year following surgery - her incision didn't heal properly and it turned out there was an infection. So she went back for another surgery, but all is well now! I know it made a huge difference in her quality of life - there were times pre-surgery when she was bedridden, housebound, and now she's living a pretty normal life - traveling, socializing, much different than before.

[badhbt]

It definitely sounds like you have instability. Have they ever done a flexion and extension xray or a flexion/extension MRI?

It is a risky area to have problems because that is where all communication from the brain to the body is. I had a problem with my C1, C2 and odontoid process. My flexion/extension xrays/MRI showed cervical stenosis due to the instability (my bones were hitting my spinal cord)

My story is unique because I have known about this problem for 15 years. I had absolutely no symptoms from it, it was a incidental finding after a car accident. I kept putting the surgery off because it was hard to run out and have surgery when you have no symptoms.

When I started having my symptoms in August I quickly revisited my neck issue. I had 4 neurosurgeons review my case. 2 thought all my symptoms were from my instability, the other 2 thought the were not related. I was not diagnosed with POTS at this time. I was having a ton of crazy symptoms and I was having a hard time doing my job. I decided to have the surgery because I was a walking disaster waiting to happen, and I needed time off work to figure out what was going on.

The surgery was a lot harder than I thought. I was in a neck brace 24/7 for 3.5 months. Surgery really made my symptoms worse....and I thought I had made a huge mistake. It did give me time to do a lot of research. I came across this site and I got tested for POTS. It has been a long road. I know this a long answer to your question.

I have to say that my POTS symptoms were worse than my surgery, and that surgery was pretty big. I had my surgery in November and now I am doing so much better. It has been a slow progression, but at least I can work and function. I can't say for sure that the surgery helped me. I did go to a ND and was diagnosed with Lyme through IGENEX labs. I have been on antibiotics too.

So I don't know what is helping, the surgery, the Lyme treatment, or just time?

[diamondcut]

Hi Heather

Thank you for your reply, you almost found you POTS back to front then! I have read blogs on fusions etc and there is no cut and dried answer as to if it will help or not is there, i can only go on how my nuerological symptoms have just declined so badly this last 2 years, yet my HR and BP has stayed the same. Things like travel, any sort of head movent, tracking things with my eyes, reading, washig hair, all make me so dizzy and weak but not in a POTs way if that makes sense. The data i have collected from my most recent MRI all has strong evidence of CCI, now its about finding a dr who will be able to recognise this happens with EDS and is prepared to help. My next appointment i will be asking for flexion and extension images. Do you think mri is better than x-ray because it will show up more soft tissue or brainstem compression/streching?

It is such early days for you and i suppose you will never know if you hadnt had surgery, perhaps things would have got a lot worse, possibly not, but as hard as it has been for you i would think you did the right thing when you read about the awful predicament you can be in when your brainstem and spinal cord is compromised.

I hope you continue to recover well

[badhbt]

You are right, there isn't anything cut and dry about it at all. I find it interesting that on the dinet website it states that cervical stenosis can be a cause of POTS. I have a hard time finding any information on this.

I don't think I have EDS, are you hypermobile? I am sure not, but I am also not sure if that is one of the criterias for the syndrome, do you know?

I think both a MRI and a plain Xray is helpful. A xray will show the amount of instability and they can even measure how many mm it is moving. There should be zero amount of movement. The MRI is helpful to see the brainstem like you said, and also how much the spinal cord is being pinched. In my plain MRI you couldn't really see any compression to the spinal cord. When I did my flexion and extension MRI you could clearly see where the spinal cord was being pinched and the brainstem was stretched. The only thing about that kind of MRI is that you have to stay in the flexion and extension postion for the whole MRI. They do but blocks etc, but you have to be still.

I did find some information on getting diagnosed for a Chairi 1 malformation. The literature I read said the best MRI for that diagnosis is a standing MRI. Since the brainstem can slip in and out of the canel, Doctors can miss it because when you are lying down it slips back into normal position vs standing will show the defect. Only 1mm has to slip in order to be diagnosed and it requires a trained radiologist to find this small defect. I have never had a standing MRI, I think my Doctor would pass out if I asked for another test...haha.

I have found articles about EDS and CCI, have you?

My neurological symptoms were the worst too. My VS could be practically normal, but I couldn't touch my nose to someone elses finger. My vision was a complete mess, I had a hard time even describing what was wrong, but I felt like I was in a bad cartoon. I had bad dizzyness with any movement and my spatial perception was really off. I was having a lot of problems thinking clearly...I almost felt like I was having a stroke all the time. I was in slow motion.

I guess one good thing that came out of all of this is it made me get the surgery and I am stable now. I don't know if I would have ever gotten around to it, and more than likely I would have had some problems the older I got and more damage was done. I wouldn't want to have that surgery in your 60's or 70's

Hope you get some answers and get some good Doctor's on your side. I had some luck emailing neurosurgeons and they agreed to look at my Xrays/MRI/CT scan and gave me their opinion. They refused to let me pay them, so I thought that was nice.

If you want any info on the surgery feel free to message me. I can send you a copy of the post-op xray so you can see the hardware...it is pretty amazing.

Take care!