Saw NS, Even More Confused

[fmimom]

Hello,
I had my appt. today with the military NS at our base, which was my only option to see a NS.  He was very nice and had obviously reviewed my MRI prior to my appt. which was definitely a positive sign.  
He says that I don't have a syrinx in my thoracic/lumbar region, but rather a "dilated central canal".  I have had 2 separate radiologists determine that I have a syrinx, but the NS says that it would only be a syrinx in that area if I had a sign of spinal trauma, which I don't.  He also said that if it was a result of my low-lying cerebellar tonsils, the syrinx would be in my cervical region which is clear of any syrinx.  He did indicate that I do have low-lying cerebellar tonsils, but they are only 3mm and they obviously aren't causing any issues due to the fact that I don't have a syrinx in my cervical region.  He said that my brain has learned to accomodate and equated it to wearing a size 8 1/2 shoe when you are a size 9, no big deal.  I asked him if it was possible that they were still causing some sort of CSF obstruction and he said that it was possible, but highly unlikely.  I asked if I should have a CINE MRI done and he said that I already had one.  Wouldn't I know if I had one?  I have had an MRI done of the brain, one of my c-spine, and one of my T-spine.  I then had a complete spine MRI w/ and w/o contrast done.  Is that the same as a CINE MRI and could that determine if there is any blockage?
I told him that my symptoms are progressing, especially in the last few months.  He did a small Neuro. exam and didn't say much about it.  I think that I failed it because I couldn't even walk toe to toe and I lost my balance with my eyes closed.  He attributes all of my symptoms to Fibromyalgia.  I said, so am I just supposed to let my symptoms progress and assume that it is all Fibro. and he said that Fibro. is a real disease and that there isn't much that can be done for it because the treatments often just make the fatigue worse.  He did put in an order for me to have another MRI done in a year to see if I develop a cervical syrinx and as I was about to leave asked me if I wanted a referral to see a NL. I feel a little hope that I will at least be able to see a NL, but I really doubt I will get much of anywhere with them, either.
So, now I have even more questions.  I wonder if I just accept his opinion and accept that I have Fibro. and really nothing can be done (I've already tried trigger point injections, epidurals, and meds.).  I wonder if I should try to get a 2nd opinion, but I honestly don't see my PCP allowing it at this point.  Plus, he kind of made me wonder about that because he said that he has never seen an adult have any relief and most have had more complications post-surgery.  He even mentioned the Chiari Institute and how they will perform surgeries on people like me only to cause long term problems that have resulted in lawsuits and the doctors losing their licenses.  Should I try seeing if someone will review my files even though he said that and there is most likely no way that I will be able to see anyone else at this point?  I wonder if it is safe for me to go back to doing exercises that I thought I shouldn't do- he said that it was perfectly fine- no restrictions.  All I truly know is that the tingling in my hands is getting incredibly worse, my balance is horrible, I feel like I'm going to pass out while driving, I have constant headaches, I am always forgetting things, and now my legs are  in pain and some days it is almost hard to walk.  Any ideas?

[actressmouse]

You need another EXPERT opinion.....plus...not for nothing....but making your feet fit into an 8 1/2 when you need a 9 isn't good for your feet either; it causes bunions!   This guy, however nice, is obviously not an expert.  I, too, had my surgery at TCI  and I feel better already (I'm just now 5 weeks post op).  I had 4 opinions before I decided on surgery AND I waited a year....only to see my symptoms get worse.  Go get another opinion.  

[Drew305]

Like everyone says on the blog... There is no harm in having a second or even third opinion. But again, like everyone says.... you need to see an expert. They are experts for a reason and will be able to tell for certain if they can help you. I sent my films and reports to the institute in WI and am waiting to hear back- sent them this monday. Good luck and definitely try to see a specialist.

[irislita]

Well def.seems he is a non specialist.a syrinx can build anywhere in the spinal canal...the location doesnt make a different diagnose!
I am sorry u are more confused and hope u somehow at least can send ur files to a true specialist.i hope u get the care and answers u.need

[selmaS]

  Hi, I am sorry to disagree with ur NS...I most likely am partial to TCI as I had my surgery there and am so glad I did...they did not make me worse, but helped me feel better....I am 3 yrs post op and doing better each yr, I have more strength to do more then I was doing b4 surgery and I was having drop attacks...I know many that TCI has helped....

Also, in talking with others with chiari I know far too many with a syrinx in the lumbar and thoracic area due to chiari not an injury...it is possible....and I also know it is not the length of the herniation but the width....

AS for a CINE MRI it is very similar to having a reg MRI but done in 2 parts....u go in for the 1st part like a reg MRI, and when u come out they inject the contrast dye, and also add a clip to ur finger to monitor ur BP....this is done as the 2nd part of this MRI is done in real time as a video, so motion instead of still pics to see how the CSF is flowing, to see if it pulsates along with ur heart rate.

I would think u would be aware u had this done too....

I was told I had fibro for yrs, and I now know it was not that...I also have EDS and that causes much of the pain I have , so u do have to be checked for all related conditions....

  Stop driving...that is dangerous....really u could get killed....this is one thing I have yet to go back to as I had drop attacks and never felt them coming on and do not trust if I would have them again,. plus my depth perception is off, as well as my night vision...so driving is too scary for me....

Only u can decide what ur next step will be, but listen to ur body and ur instincts about this.

Good luck <3