I live in the San Francisco Bay area. I've been trying to find a doctor for my son who has some experience with Autonomic Dysfunction in this area, for a long while. I just made an appointment with a Dr. Friday, at Stanford, who is treating POTS patients. The appointment is... get this... 6 months away! Apparently, she only works there one day a week. At first they said no, he's only 14, must be at least 16. But I kept calling, and today they said OK!
I know most of you folks here are not West Coast, but if anyone has been seen by Dr. Friday, or knows anything about her, I'm eager to hear your experience. I'm going to keep looking, and try for an earlier appointment, if possible, but at least we finally have a foot in the door.
While I do not live on the West coast, I did want to tell you that I am glad for you that you have an appt for your son :)
Did you ask them to put you on the Cancellation (sp)...(so scary I can not remember how to spell most of the time antmore!) List? I hope that you can get in even sooner and that this doctor will be a good fit for your son.
I'm SO glad you found a doc out West!!!! Please do keep us updated, as there's always a slow trickle of passers-by searching for autonomic specialists in that area of the country and we'd LOVE to have a name to recommend.
I will definitely keep you all updated. I do hope this doc can be of help to my son, as well as other POTS sufferers in CA. I have been searching the webs, and asking docs for months, but it has been difficult to even get them to understand the problem. They want to believe it's just "deconditioning", and have treated us as if that is the case. Some docs get defensive, don't want to be taught anything by their patients. Others are more open, asking "What's POTS"? etc.
The problem is, nobody wants to be the one to deal with this, because they don't have the experience. Our new endo, after I showed him Dr. Grubb's book, Dr. Julian Stewart's web info, and Dr. David Bell's book, said I should consider traveling to Vanderbilt, for testing.
This was not the answer I was hoping for. I guess what I need to find is a young doctor looking for a challenge!
Last year, (5 months before surgery), when my son was in the hospital for MRI, EKG, hydration, etc., many docs were in and out of his room, asking questions, taking notes. At one point, I pulled out my pituitary disorders book, to explain something they were not aware of. They were impressed at the efforts I had made, to learn about my son's condition, but I just felt like yelling, Why can't doctors give their patients some information, so we can make informed decisions? Why do I have to go searching for this info elsewhere? Why isn't there a doctor who can take the time to explain important facts, so that I know what questions to ask? And then they get upset when we get info off the internet.
When they sent a dietician around to ask about his digestive issues, I pulled out his nutritional tests and said he had leaky gut syndrome. I think my heart actually sank to my stomach when the dietician asked, "What's leaky gut syndrome"?
Am I unusual? Do most patients just follow doctors orders, even though their health is not improving? I suppose docs just expect us to trust them, to do what they went to med school for. Maybe I'm just an overprotective mom? I know many of us feel as if we've gone to medical school after months of reading, learning everything we can about our health problems. I am so impressed with the knowledge "us plain folks" have acquired, and are sharing with others here, in the hope of helping a fellow human being with their own maladies.
And the good news just keeps on coming! I got a call from Dr. Friday's office today. The receptionist said something about a second clinic opening, and would I be able to bring my son in on Thursday?!!! (Instead of in October). I can't believe it! Of course I said YES, but I'm a bit unprepared. I thought I had plenty of time to reorganize lab reports and such, and fill out the questionaire they sent. But I'm not complaining!
It's going to be a bit of an adventure. I still have my leg in a cast, from breaking my ankle in May, and Casey needs to be pushed in the wheelchair. But the husband is driving us, and can help with that. I will have to use my crutches.
Casey had a terrible headache today, which has me worried. Headaches haven't been a problem for him, since the tumor surgery. My worst fear is that the cranio will grow back, since they have a tendency to do that.
So, I guess we will see if this doctor is going to be able to help with the autonomic symptoms a lot sooner than I thought. I'll let you know how it goes.
anyone SF Bay Area AD sufferers?
EL- my dear friend lives in Marshall, West Marin and diagnosed a few years ago w/ AD. She is 80 and a rockstar, but just told me today the she doesn't know anyone who has AD. I was hoping you two could connect. She does alt therapy (that I know-enzymes etc;), but may have seen Dr. Friday. If not-I'm happy to hear about him and will pass the info on to Donna. Healing wishes to your son. I am sure it is very painful for you too. My boyfriend has a son w/ a chronic disease. He wrote the stem cell research initiative that passed into law in 2004 in Ca.- what is going on w/ that research? That research/work seems like it would be so geared at helping regenerate nervous system disfunction. What do I know. Please email me if the spirit moves you and I'll connect you two. thanks and best-***@****
Sorry! I forgot to come back to this thread after my son's visit with Dr. Friday.
First, I will say Dr. Friday is a very approachable, friendly doctor; easy to talk with. Our visit with her was pleasant and everyone in the office was very helpful.
Dr. Friday is a cardiovascular specialist whose focus, I believe, is with arrhythmias, and syncope related to heart dysfunctions. She is very informed about POTS, however there is no clinic at Stanford for evaluating or testing for non heart-related autonomic dysfunction. :(
So, our visit went like this. Since our appointment had been unexpectedly moved up from October, they did not yet have any of Casey's medical history (except what I briefly explained over the phone). I spent about 30 minutes going over it in detail with a nurse, who wrote it all down, and then took this, and our folder of lab reports out to have Dr. Friday look at it. When the Dr. came in to see us, I briefly discussed the pituitary surgery, the endocrinologist's evaluation, and Casey's symptoms. At this point, my husband and I were asked to leave the room, so that she could speak with Casey alone. (I thought, how nice, finally a doctor is going to actually examine him).
When we returned to the exam room, Dr. Friday spoke mostly about Casey's hypermobile joints and the possibility he may have Ehlers-Danlos Syndrome. She agreed that he definitely had severe orthostatic intolerance, but had heard nothing abnormal with his heart, and said that POTS can be a secondary effect of Ehlers-Danlos. She said she did not want to put him on any medication at this time (Casey is already on a corticosteroid - has been for three years) but would send her report to Casey's endo. I asked about tilt table training and she said they do not do this at Stanford. She gave us a print-out of info about Ehlers-Danlos and her e-mail address.
And that was about it. I asked Casey later about his private "exam", and he said she only listened to his heart, nothing else. (He was evidently keeping her entertained with jokes the whole time though - I heard Dr, Friday's laughter from down the hall.)
I seriously doubt Casey has Ehlers-Danlos. He only has mild hypermobility, and after having surgery to remove a pituitary-destroying craniopharyngioma, so many other CNS possibilities exist, IMO.
Anything is possible however, so maybe a trip to a geneticist would not be out of line at this point. He does have a single palm crease on one hand, and the whole family has red hair, so , who knows?
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