My NS says my syrinxs aren't related to my Chiari?

Hey all,

Sorry I've been AWOL - you guys are so good to me, but life's been stressful lately and I haven't been online.

Basically, I have a herniation between 5-7mm when you look at the MRI different ways, my NS says it could even be a bit more because they didn't get the view he normally uses to measure the herniation.

I also have 2 syrinxs - 1 that runs from t2-t4 and the other runs from t5-t12? I don't remember the exact verterbrae, but I do know the first one is 3cm and the second is 15 cm, basically my entire thoracic spine has syrinxs. Both are only about 2mm wide and they're not sure if it's one long syrinx or two separate syrinxs cause it looks like either or when you see the MRIs. The MRI report suggested additional testing to find out but my NS said no need. He said the syrinxs are too low in my spine to be associated with Chiari and are no big deal. He also said the syrinxs aren't causing any of my symptoms - I have back pain, bladder control issues, weakness and lots of tingling in my lower body. He also doesn't think those are Chiari related symptoms either.

So do I have syringomyelia then? I was under the impression that syrinxs are bad and when present with Chiari they are usually related? Why else would I have syrinxs?

He's only done 2 Chiari surgeries but he's got a great national reputation in neurosurgery. If I get a referral to another NS, it could take years (thank you Canadian health care) and I'd rather have this dealt with sooner then later. He's going to do decompression but I have to lose enough weight to make it safe enough first.

Any thoughts would be great.

It seems like a lot of your questions are technical or medical, and though I want to respond, I don't think an English major is the best qualified to help you understand things. So I'll stick to what I actually "know."

First, I, too have a syrinx, about the same diameter as yours (2mm), but mine is in my cervical spine, something like C5-C7. Even there, one of the three NS I consulted said he thought the syrinx might be unrelated, because it was too low. So, yes, your NS is "right", because your syrinx might be unrelated. On the other hand, according to a different NS, the exact mechanism which makes a Chiari descent of the tonsils (herniation) cause a syrinx is unknown. They are trying to understand exactly how the syrinx forms, but don't know. So, as far as I'm concerned, your syrinx might still be caused by Chiari.

Second, I was also told that syrinx can be caused by: tethered spinal cord (which they would have seen in a lumbar MRI if you had one), accident (like a car crash) or a tumor (big scary word, but something my NS wanted to conclusively rule out with a contrast MRI in the months prior to surgery). My gentle advice would be to talk to your NS about whether he thinks there are other possible causes of your own thoracic syrinx(es), and what he might do to rule out these possibilities before the decompression.

Third, do try to find out what he plans to do for your decompression. Just bony decompression, without opening the dura, seems (based on forum posts and a few tidbits picked up here and there) to be associated with revision surgery. It seems like it may not do the trick fully. My own NS says that is why he also "buzzes" the tonsils back during surgery. A scary sounding idea, but I'm about eight weeks post-op and don't seem to feel any affects of that part of the procedure.

Fourth, if the procedure he plans sounds reasonable, don't worry about his skill set. My NS explained that the Chiari procedure is essentially the beginning (opening, cutting the skull to get to the brain, opening the dura) and end (sewing in a patch or sewing up dura, hopefully with no leaks, closing the surgical site) of a tumor operation. And for us, the NS doesn't have to go rooting around in our actual brain looking for tumor bits. So, in some sense, our surgery is technically easier.

Fifth, some specialists can order an EMG, electro myleogram (?), in your legs to test your peripheral nerves for damage. Using this test, my NS could tell that my syrinx had been damaging the peripheral nerves for at least five years, probably ten. So, you would be able to trace your tingling to the syrinx for sure. The real question, though, is if the Chiari surgery will help that syrinx. Try to rule out those other causes, and then consider decompression.

Finally, my personal belief is that earlier surgery is good. My NS told me this week that the longer you have symptoms, the longer it takes your body to heal those symptoms. So, for me, symptomatic (in some sense) for only months, healing is a matter of weeks. If symptoms lasted three years, he offered the example that the symptoms might take eighteen months to resolve. So, personally, once you've determined Chiari surgery might help YOU, I would agree that sooner is better than later.

Good luck! I found this part of the decision process quite difficult, but did get through it. When I went into surgery at the beginning of July, I was VERY certain it was the right decision, and I am very glad I had surgery.

My honest opinion....sounds like you need a second opinion.

In all of my research it looks as if Syrinx can be directly related to the pressure from the tonsilar herniation caused by Chiari. Get a second opinion. Blessings to you!