well, I am mad as ****. had the mri of spine in feb. went back to neuro 2wks later and was told everything was normal. since then I have been dx w/TN and my pcp was looking at report from neuro and asked me if he had told me I had a cervical syrinx? that doesnt sound normal!! I dont understand why he didnt tell me. PCP said it would cause the TN if it has enlarged enough to reach brain stem, but it would not cause all my lower body tingling, numbness, burning, aching and shocking pains that has been going on and off for a year and half. I go to new neuro in 2wks, but i was looking at those images and thought they look so much alike how do the know which is which.
So have they told you that you have a syrinx? where is it at in the spine?
I don't have the results of the 2nd batch of studies. I'm hoping to know more soon. I don't know a lot about this. But, they mention brainstem because I think that is where it starts getting hairy if it expands and elongates into there. I really don't know enough to speak about it intelligently unfortunately.
Something disrupts the CSF flow. Large majority of cases are from the arnold chairi malformation, but it can be caused by other obstructions, or viruses, etc. If they saw a syrinx, then I do believe they should watch it for elongation and expansion. Just from my short time looking into this. Did you get a brain MRI too?
Maybe the doc is saying it wouldn't cause the problems downward because it's in your c-spine? That's just my attempt at a guess. They are looking at mine in the c- and t-spine. Initial info I have is that mine expands throughout both so I praying it's a glitch and making a fair attempt at being calm. My main symptoms though are a feeling of water moving around in the center of my spine, feels nervy and my skin burns on my mid-to-lower back. I have had areas of numbness, spasms in various areas, but I have MS, so who knows what is from what.
Don't get too freaked out though, varying websites have differing info on them. The best sources of info I've read into discuss work on the cause of the 'obstruction' not the syrinx itself. By doing so, would restore most times the flow. The sites that discuss operating on the syrinx itself steer clear of.
Just another guess here for me, but thinking neuroradiologists with the proper scans should know the difference due to location, look, etc.
Did you manage to get copies of your study? For the next appointment? Do you have your timeline and list of symptoms prepared?
Yes, I have seen the sites that talk about surgery, I really dont know anything yet from the reports, When I get them,( b-4 June 11) I am going to make copies of them to keep. I did have an MRI of the brain June 07, and spine Feb 08, everything normal, according to the doctors, I never seen the reports myself though. My back gets numb when I bend over, just the slightest angle, and alittle time it goes completly numb(mid section) I have had alot of electric shock pain, aches and stiffness, prickley feeling in my feet all the time, feeling of being on fire in patches on my right side (torso, leg and foot) spasms in right thigh(new) twitches, weakness/heavy right side, spasms in foot, brain fog, right eye pain and blurry, and dizzy/nausea, bowel and bladder problems ( 2 UTI ) 2 times I have had the water running on me feeling and last month started the TN. Everything started Jan 07 and it last 2-3months and then goes away. After 1st time everything went away but after 2nd time the prickly in my feet stayed, everything has been lower body until just a month and half ago except for the brain fog, So many things. I have started working on the time line and will take with me on June 11th.
Seems to me that any kind of nerve damage, lesion syrinx tumor let alone any diseases cause the same symptoms, am I right ? but would they come and go like ms does, and do they tend to flare when you get hot? I have been doing better this wk, but yesterday I went to a greenhouse to get some flowers and I had to cut it short in there, I started getting dizzy and the prickly in my feet got very intense, it took about 3-4hrs after I got home to feel better. By the way I was in a wreck in 2000, whiplash bad, guess the syrinx could have developed from that.
Various angles worsen my problem too. I've only had this new stuff though since February. Sitting, moving and bending over, you can feel it more. It's so very strange.
Prior to this new stuff though, I have had the numbness but it's spotty, and can be anywhere, pops up and then goes to other spots. I've had bowel problems too, pain in my eye, stiffness, but again, trying to figure out exactly what is causing what symptom is not something we can do alone. I'm glad you have a couple weeks to gather your facts for this Doc.
Now that I think about it, I had whiplash a very, very long time ago. The scary thing about reading about those syrnix to me is the expanded central canal and how over time can cause damage to the spinal cord.
Our saga continues huh? We just need a good doc who is in the know, to figure this out so things don't progress.
From what I've read, a syrinx most certainly CAN cause all of the symptoms you've listed. And the symptoms can be very hard to treat. I would see about a second or even third opinion. Perhaps you can find someone with actual experience (as I don't think anyone specializes in this) in dealing with and treating syrinx.
Not to scare you, but there might be a certain amount of urgency to finding the right doctor as the longer your symptoms persist before treatment, the less recovery you may have if you choose intervention (drainage or implanting a shunt).
I've had two--the cervical syrnix resolved after emergency cervical stenosis and cervical fusion surgery (I was diagnosed with MS--after 30 years of suspicion, as a lesion was found when admitted with profound arm weakness caused by the cervical stenosis) but an additional syrinx was found in the thoracic spine (T-6) a couple of years later while looking for additional MS lesions. I don't know what might have caused the thoracic syrinx as I have no known history of thoracic injury or disk problems in that region either. We also don't know how long it's been there either, as despite my longstanding neurological issues, no one had imaged the thoracic area for decades. The T-6 lesion (syrinx) does help explain some of my other symptoms such as gastroparesis. Unfortuantely that is one of the worst places to have one, as T-6 nerves control various autonomic functions.
This T-6 lesion may explain my longstanding and persistent flank and lumbar pain, as well as some of the other symptoms that weren't explained by a 1983 femoral nerve injury--but that would mean that this T-6 lesion would have had to develop at the same time as the femoral deficit, which is puzzling in itself. We've never figured out what caused the 1983 lumbar plexus palsy (which involved the femoral nerve) as I had gone in for knee surgery and it was over a month before anyone realized that I had a profound deficit (it mainly affected my quads, and I'd been in a fixed knee splint prior to starting PT). The doctors suspected a retro-peritoneal hemorrhage (or MS), but a one-time incident wasn't consistent with my long-term symptoms (and no MS lesions were found, though due to the development of other neurological issues the MS question persisted), so I always questioned that assumption.
The nervous system largely continues to be a unexplained mystery, though research is constantly expanding our body of knowledge. Sometimes diseases can expose the workings of the body as much as studying a healthy body, so don't consider any of your time with a doctor as wasted. It not only may help you, but may help the "next guy" coming behind you. That said, don't let any doctor talk you into something you don't understand or that you are uncomfortable with, and don't stay with a doctor who doesn't answer your questions, lies to you, or dismisses your concerns. I would be outraged by being lied to by a doctor about your diagnosis--it is quite literally dangerous that you didn't know that you had this condition. Secondly, I would be very reluctant to continue seeing a doctor who dismissed your symptoms. It may be that he was trying to reassure you (not appropriate) or that he in fact is uninformed about the condition and it's potential effects but either way he is not the doctor for you. Regardless, do send him copies of any medical sites or journals (make sure they are valid and legitimate sites, not just bloggers or psuedo-science sites, etc.) that confirm your symptoms are well-known to be associated with having a syrinx. He will then know that (especially in this day and age of the internet) he can't get away with passing on inaccurate information--whether he knew this was incorrect or not.
That said, you also have a responsibility (as does every patient with a chronic illness or condition) to learn everything you can from valid and legitimate sites so that you can be your own advocate. It may also help to have those close to you learn just as much so that they better understand what you are going through, what is happening to you, what may lie in your future, and best be able to advocate for you if you are not able to.
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