I went to Vanderbilt, almost two years ago, to see exactly what type of autonomic dysfunction I had.. They almost immediately diagnosed me with POTS. More recently, I have been seeing a neurologist at the University of Miami. He noted that I have many very large cysts on my spinal cord. He feels strongly that even though I meet the criteria for POTS,my problems may be that I am leaking spinal cord fluid from the cysts. I have a lot going on physically and this is only part of it. I'm curious, have any of you heard of this? If so, please tell me what you know. Thank you so much!
My son's doctor checked him for a spinal fluid leak, MRI Myelogram(sp?) last December. It came back fine though. The doctor said that could have been a very easy fix to his problems.
With the MRI they did say he has some cysts on his nerve endings, but that they weren't a problem. I have always wondered if the cysts are a problem though. He also has a small cyst on his brain, that the doctors also tell me is now problem.
As POTS is a "syndrome" (a constellation of signs and symptoms that doctors tend to observe occurring together) rather than a disease (a set of signs and symptoms with a unified, identifiable cause), this doesn't necessarily mean that Vanderbilt was "wrong" in their diagnosis of POTS but more that they failed to dig deep enough in your case.
I apologize for repeating my "symptom vs. disease" spiel for the millionth time. It's just key to understanding that POTS is more of a "classification" than a "diagnosis." It tells you what is going on postural orthostatic (when you are upright) tachycardia (overly fast heartrate) syndrome (cluster of signs/symptoms), but it doesn't tell you WHY; it is not a diagnosis of a disease process. Nor is any "subtype" of POTS except in the case of specific, identified forms of secondary POTS or NET-deficiency.
In short, it's possible that due to CSF leak you met the diagnostic criteria for POTS. Whether or not a specific doctor or clinic would consider that secondary POTS or not consider it POTS at all is another matter entirely; I can't say for sure. I've never seen that as a particular example. It seems plausible, at least.
Diagnostic semantics aside for the moment (oh how I have such a terrible knack for getting caught up in that!), what tests are they planning on running? When will you know more about whether or not you are indeed leaking CSF and what they can do about it if so?
I hope that whatever comes of this, it results in an improvement in your treatment and your quality of life!! I'm here cheering for you!
Thanks guys! Next week I am having lumbar, thoracic and cervical MRI's done w/contrast. He said "sometimes" you can actually see a leak.
I have had MRI's done annually for the past six years, due to suspicion of MS. When I had them done last year, it seems that there were many, many large cysts that have formed since the previous year. I'm anxious to see what the MRI's show this time around.
Honestly, I have been to several great hospitals, seeing some of the best doctors over the past six years. I can honestly say, that I am exactly where I would be if I hadn't seen a single doctor...very discouraging. EVERY doctor contradicts the one before.
I'll let you guys know what happens next week...and thanks again!
I think I understand to some extent what you are saying about being discouraged with the doctors contradicting one another.
I'm not in that same boat exactly, but I've come to this point where I'm kind of fed up with most of the "specialists/experts" and would rather spend most of my time/effort working things out with my general practitioner (who ironically enough is a "lowly" resident). At times I have no choice but to see the specialists to get certain tests or whatever, but when it comes down to it, I'm tired of the experts because it always seems to result in me spinning my wheels more than actually getting somewhere. The family medicine perspective seems a lot more ... rational? direct? practical? Whatever it is, it always seems like it's less about running umpteen different tests and more about just finding solutions to improve my life. I think that's where my head is, at least right now.
I'll keep you in my thoughts and look forward to hearing how things go for you,
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