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[jchebert1979]

Hello everyone, I just had a huge opening post typed out but I hit the back button and everything was erased. Since I am in a lot of pain I will make this short.

For 18 months now I have been in severe pain. The pain is in my head /neck, left upper back, left chest, left arm. Any exertion makes it worse. I hurts to just stand up. Also my legs buckle sometimes when I am starting to walk. I never fall, they just buckle and feel like they are giving out.

Aslo when I turn my head or look down I get a sensation in my left foot. It is not painful, just uncomfortable. My neck pops and cracks all day long by just turning it. When I do crack it myself I sometimes get a shock down my arm.

Basically if you have ever been to physical therapy and had one of those electrical stimulators on, that is what all of the areas I mentioned above feel like 24/7. People ask me about quality of life and I stopped thinking about that a long time ago. The pain is so bad that I can't think about surviving the day, I think about surviving minute to minute.

I have been to countless cardiologists, neurologists, nuerosurgeons, and even the Mayo Clinic. They have all dismissed my symptoms as anxiety and depression (I'm sure plenty of you here have had that run around).

I have also had surgery for Chiari 1 malformation which I had hoped was the cause of this but I am sure now that it isn't.

I have had numerous MRI's and they all show the same thing. C5-6 herniation (extrusion) with mild or moderate (depending on which MRI report) central stenosis and bilateral foraminal stenosis.

Here is a pic of one of the older MRI's from last year, let me know what you think.

[jchebert1979]

Forgot to add, I am seeing a top neurosurgeon in my state who has already offered a prodisc ADR tomorrow. I held off on the surgery because the brain surgery seemed more important and there was a chance that it would help my current symptoms.

[Harrison]

J, sorry you are here, but I hope we can help. Gosh, you have some homework cut out for you! Sorry to add to the load with a question or two.

"I have also had surgery for Chiari 1 malformation which I had hoped was the cause of this but I am sure
now that it isn't..."

Can you talk a little bit more about the basis of your conclusions? And more about the brain surgery? Do you happen to know if your CM was congenital? I found an article recently which may be helpful, though this may be old news for you…

For what it's worth, we've seen C5-6 problems that LOOK much worse, but patients are not symptomatic. The difference between them? A diagnosis to explain the source of disease. Or, more often than not, no reasons at all -- just speculation and tentative conclusions. There continues to be more questions than answers in many patients' situations. : (

I look forward to learning more. I hope we can give you the support you need in the days ahead.

[jchebert1979]

Thanks for the reply. Basically Chiari Malformation is when the bottom portion of your brain herniates through the opening of the skull. It can back up spinal fluid and put pressure on the brainstem. There is a controversy in the medical field because of all of the vague symptoms that it causes.

The operation is called a posterior fossa decompression. They go in a an take out about a 50 cent peice worth of skull in the back to make room. They also take tissue from your underneath your scalp and sew that into the lining of the brain to make more room.

Deep down I never thought that the Chiari was causing the problems that I have described, but since it was possible that it could be, I had hoped the surgery would relieve them. I have absolutely no regrets though. The doctor told me that it was actually worse than he could see on the MRI's and I had an issue that he mostly see's with people who have spinal cord cysts. Thankfully I did not, but it was probably only a matter of time before they developed.

Also I healed extremely quickly from the surgery. I was driving at two weeks with full range of motion in my neck (they cut through neck muscles at the back of the head) at three. I was back at work in 4. Most can't turn their neck at 3 months. Oh and when I say back at work I mean I have a job where if I need to I can lay down and rest.

As far as doing my homework, that is all I've been doing for the past 18 months, lol. I have been researching ADR's this whole time as well as Chiari Malformation. Since the only tests that have come up with any info are the MRI's (multiple EMG's showed lower voltage in left arm but nothing specific) I had to make a judgment call on what to do first.

Here is a pic 3 days after surgery.

[jchebert1979]

Oh just saw the link to the article. The Dr. who wrote it was the Dr. who performed my surgery.

[kimmers]

JCherbert...

Welcome to the forum.
I have hit the wrong key on my computer too many times.
Glad u healed up with the Chiari Malformation quickly.
Cannot speak about cervical ADR as I had a lumbar surgery, but there are plenty of cervie people on here.
I will say what others will say on here: having a good (great) surgeon is what is most important. I didn't know anything about ADRs when I first figured out I might have to have surgery and now, well still learn a lot about ADRs.
I do know some people are very misinformed about ADRs. They have been doing them in Europe longer than here, but they are not experiemental, unless they are the ones in trials.
So welcome and good luck with your decision.

Kimmers

[jchebert1979]

Hello everyone, I will be seeing the NS who initially offered a prodisc c for my c5-6 herniation. I have asked a few doctors about this symptom and I always get looked at like I am crazy. I am wondering if anyone here has experienced it.

At the back of my neck/base of skull i get a gurgling sound as if there is a pressure release. It is very difficult to describe but it feels and sounds as if you were forcing saliva through your teeth with your tongue. It lasts a few seconds and usually happens when I am laying down.

I used to think it was related to the Chiari Malformation and the backing up of spinal fluid, but the post surgery decompression MRI shows a HUGE area for spinal fluid flow. Besides, my CSF was never blocked.

I wonder if this could be from spinal fluid getting backed up at C5-6 due to the central stenosis? If that is the case, then the increased pressure in that area could in turn be putting pressure on the cord itself causing symptoms of myelopathy. Any opinions would be helpful.

For those who know what they are looking for in an axial MRI view, here is a picture of the central stenosis on the top and a good disc on the bottom for reference. Let me know what you think.

Thanks,
Jason

[Harrison]

Hey, J,

I hope it's OK that I merged this with other topic (got your PM). For what it's worth, for us, I believe your problem is highly unique. I don't think we can or should speculate on what the symptoms might be. Do you have a (another) neuro-CM doc in mind to see? We are happy to provide support and help you network, but the community is (perhaps) not fluent in CM matters. That said, we are here for you!

[jchebert1979]

"Do you have a (another) neuro-CM doc in mind to see? We are happy to provide support and help you network, but the community is (perhaps) not fluent in CM matters."

See that is the problem that I am having. I shouldn't have even talked about the Chiari. In fact I have had two NS here refuse to see me for my neck because I have had surgery for Chiari.

As far as I'm concerned the Chiari surgery was a success and it is no longer a factor in my symptoms. Of course I know that no one here can diagnose me but what I need is speculation. I have exhausted every avenue that is available to me. If nothing more, hopefully someone who is in a similar situation can give me some input. I mean isn't that what most of us are looking for when we joind these kinds of groups?

I hope this reply doesn't sound too abrasive but I am here because doctors have been of little help.

[Harrison]

J, I understand what you are saying now. I'll defer to others to chime in and offer their ideas and support.