A little bit of background on me: I am a 19 year old female with a 3.5 + year history of headaches, dizziness, stomach issues, neck pain, low back pain, etc. I have been diagnosed with a brain malformation called Chiari 1 malformation that causes some of these symptoms. I recently (12/21/12) had surgery to hopefully help relieve some of these symptoms. The concerning part is that i black out and sometimes pass out when i go from a lying to a standing position which is NOT a symptom of Chiari. I have wondered if something else is causing this, but i was waiting to see how i recovered from my surgery.
I had a follow up visit today with my neurosurgeon and he did a blood pressure/ heart rate test while I was laying down, sitting, and standing. He found that my blood pressure drops drastically (almost 15 points) and my heart rate goes up even more (almost 30 points) when I go from a lying position to a standing position. The resident called this "very significant'. I did not get to talk to my NS about this as he was very busy and only the resident came back in, but the resident said I do not need further testing and to just stay hydrated. I do not agree with this and think that I need to find a dysautonomia specialist and get tested for POTS and other dysautonomic disorders. Does this make sense or do you guys think that I should just wait and see how I recover from the surgery?
Chiari does have some comorbidity with dysautonomia. Also, dysautonomia can be triggered by surgery. If I were you I would go ahead and schedule a consult with someone who can evaluate you for dysautonomia, including POTS. It says on your profile you are in IL; if you are wanting to go to one of the major dysautonomia clinics in the US, you'd likely be choosing between Mayo in MN or Cleveland Clinic in OH. It's almost midnight or I'd probably pull up google maps and calculate the distances for you, but you can do it more accurately knowing where you live in IL anyway.
You definitely have other options besides going to one of the big autonomic clinics at this stage. Most large teaching hospitals have at least one specialist who does this sort of testing; you may want to start by calling the cardiology department and asking for an electrophysiologist or EP-cardiologist. Talk to his/her nurse or secretary and make sure s/he does Tilt Table Tests before scheduling anything; if they do that, they're probably the one patients get sent to to test for dysautonomia/POTS. There may be additional testing that you will need that will be through the neuro or other departments, but especially with your presenting symptoms, the bulk of the tests you'll need at this stage will be cardiovascular.
Please feel free to post again with any further questions you have. I look forward to getting to know you, and am sorry it's under these circumstances. I hope you start getting answers soon.
I am looking into doctors covered by my insurance in the Chicago Land area and it looks like I found four of them so far. All of the have areas of expertise in autonomic disorders and testing, but have different specialties.
One is Dr. Barbara Deal a cardiologist (not sure about the electrophysiologist part) at Children's, but I am not sure that I can get into Children's because of my age (I am 19.5)
The second is Dr Scott M. Miller, an EP-Cardiologist at Luthern General.
The Third is Janice L. Gilden which is the one that I found from multiple dysautonomia physicians list that other people have posted on this forum, is a specialist in internal medicine. It looks like she does endocrinology and diabetes more often though...
The fourth is Dr. Alexandru Barboi who is a nuerologist at Rush University.
I am not sure if you have heard of any of these doctors and if you have a recommendation, but from what you were saying is that it looks like maybe the doctor at Lutheran General would be the way to go since he is an EP-Cardiologist.
What you are describing sounds like orthostatic hypotension when it comes to your blood pressure reading lying down versus standing. The first thing doctors seem to think of when this happens is dehydration, which explains your doctor's admonition to keep hydrated.
While the first three symptoms you list- if by dizziness you mean light-headedness, stomach issues and headaches can all be associated with dysautonomia, I believe Chiari's is associated with headache (as well as rapid heart rate). And dizziness- could you define a bit more? For example, does the room seem to spin or do you seem to spin or are you light headed or do you have a feeling like your head is swimming etc.?
After I had a surgery, years before I was diagnosed with I.S.T. and P.O.T.S., I was blacking out after a knee surgery at home one time when trying to get up from a wheel chair to use the bathroom. Your surgery was still not very long ago. I think I would follow your doctor's advice about hydration and perhaps for now- wait to see if these blacking out/fainting type symptoms persist for a longer period of time (maybe give it six weeks from when you had your surgery). If it continues, despite keeping well hydrated and putting more time distance between you, anesthesia and allowing further recovery from your surgery, I would inform your doctor of a persistant problem and request a referral for further testing regarding your orthostatic intolerance.
If you do pursue further testing, an EP definitely is the right kind of cardiologist if you are looking to get your orthostatic intolerance type diagnosed.
I would either go with the EP-cardiologist or the cardiologist at the children's hospital. There's actually a fairly good chance that the children's hospital will see you, despite your being over 18. I just became a first-time patient at my local children's hospital at the age of 33! If the children's hospital has a specialist that they think can specifically suit your needs, they are often willing to bend or break the limits of age when it comes to "children's." This often applies in cases of rare, under-recognized, or difficult-to-diagnose disorders and diseases, or patients with multiple diagnoses/comorbidities.
Keep us updated on how things go for you and let us know if you have any other questions.
I was waiting to see how I felt, but I have just been getting progressively worse over the past couple of weeks so I decided something needed to be done! I just started back at college yesterday and it was a disaster! I will need to figure that one out...
Anyways Children's said they would not take me due to my age (the nurse that took my call was incredibly rude!) so I decided to go with the EP-Cardiologist at Lutheran General. I made an appointment for February 1st so I will keep you all updated :)
I came across your thread while researching the right dr to see to diagnose POTS. I have been seeing various doctors over the last year and a half and am tired of feeling this way and I am just getting worse. Was curious to see which doctor you went with and if you would recommend. Thanks!
After some trial and error I ended up going to Dr. Barboi at RUSH University! Although he is a neurologist he is the correct fit for me because I have other neurological issues as well (Mainly Chiari 1 malformation along with a connective tissue disorder EDS). I love him! He is the first and only doctor that has actually been interested in helping me figure out ALL of my issues. The doctor at Lutheran General was not a good fit for me. PM me for more information on that.
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