Birmingham Dr Appt

[lfreem02]

I have an appointment at the Autonomic Disorders and Mitral Valve Prolapse Center in Birmingham next month. I have seen that some people have been there, and wanted to know what the experience was like, what I should do to prepare for it, and if anyone has had positive results.

I have referrals from doctors to go to Vanderbilt, but it is taking a while just to get an appointment scheduled. I am hoping the doctors in Birmingham can help in the interim.

[Linj10]

I see dr. Susan Phillips at that center and ADORE the women!! She gave me my life back and is so understanding. I'm sure you'll have a good experience. A friend if my fiancé's wife, who lives in north Alabama, was going to bandy and traded it in for the MVP here in bham. The great tng about their office, you can email the nurse anytime with questions and they always respond! Very helpful esp if you don't live around here. I feel very lucky to have this clinic in my hometown.

Wear comfy clothes and tennis shoes. They take you back and do your height and weight and have you out a gown on. I had my echo first, then an EKG, then did the tilt table test, and the stress test. If you're a women, modesty does fly out the window as your heart is located under a lady part everyone makes you feel so comfortable though and talks to you. After all the tests you speak with the doctor about your diet. It takes a good few hours.

[bellgirl]

Hi, I also go to Dr. Susan Jane Phillips, at the Autonomic Disorder/MVP Center of Alabama in Birmingham, and she is wonderful!! She spends time talking with you, answers all your questions, ( I emailed her a picture of my dilated pupil once), and she is willing to work with different medications to get you balanced. I've been on 2 different Beta Blockers, and have increased my clonazepam, and if that doesn't help, I'll try a SSRI next. I had the same gammet of tests EKG, Echo, Stress Test, and Tilt table. In the last year I've been to see her 4 times, but it depends how you are doing as to how often you need to see them. I actually went 6 months this last time, but need to see her again in November, since she is tweaking some meds. I've also met Dr. Watson, too, and know someone who goes to him. He seems very caring, too. I live in Huntsville, AL....

Just so you know Vanderbilt just does research. They don't treat dysautonomia.

[bellgirl]

Dr. Watkins...sorry misspelled his name!

[Linj10]

Yes, I forgot to mention candy was just research. They do try trials but no exact treatment. Only stuff that may or may not help. Their website is great though!

[lfreem02]

This is very helpful! I am seeing Dr. Watkins on the 17th. I live in Atlanta, so we are going to make it an overnight trip to avoid the morning Atlanta traffic. I don't need the extra stress of worrying about making it on time. I was surprised how quickly I was able to get an appointment, and they do seem very organized. I have been waiting for over a month and still have not heard about scheduling an appointment at Vanderbilt. I have had several EKGs, Echo and Echo Stress Test, Regular Stress Test, and Tilt Table Test. I am going to take the results with me in case they want to compare. I had an EEG done a couple of weeks ago, and it did show an imbalance in the brain, but I am not sure which side. The neurologist doesn’t think I am having seizures, but didn’t sound confident. Hopefully Dr. Watkins can finally get me on the right track.

[issie]

People who see doctors in Birmingham ----are you all still happy with this doctor? I have a niece in law looking for a doctor to help her with her POTS up around either Birminham or Montgomery. Can people give me a list of the doctors available there?

Issie

[derekliz]

I too live in the Atlanta area and went to Birmingham first. While I was happy with them, 2 things disappointed me after coming home and doing more research. They did a 10min TTT and I was on a beta blocker. They never told me to stop any kind of medications or supplements that affect heart rate or blood pressure so I do not feel my results werr accurate. Also, for me, when I asked if they would look into possible causes of my POTS, they told me they would not do that.

I see an autonomic disorder specialist in Auburn Alabama, which is the same distance for me. They redo all testing. I had a 45 min TTT, echo and ekg. His name is Dr. William Ross Davis and if you want, I can send you their contact info and his training. Dr. Davis put me on Ivabradine (which is not available in the U.S.) I never have a problem getting in touch with his nurse and she is amazing. You can email her or talk to her prior to even setting up an appointment to see if they fit your needs. They will mail a packet for you to complete and once you return it, they will schedule an appointment.

I hope that you find someone who can help you. It can be a long process but once you do, it makes a huge difference to have a physician who does not write off your symptoms. Good Luck!

Liz

[issie]

Liz,

Thanks for the information. I'll forward it to my neice. I was here visiting this week and found that she has a whole lot of testing that hasn't been done on her. I hope that more testing can be done and more answers found for her. Did they do a catacholomine test and also blood volume testing on you? It would also be a nice thing to have a good doctor in mind for when I visit Alabama, if I were to have problems.

Issie

[derekliz]

They did do a standing norepinephrine test...if I remember correctly, 10 min into the TTT. They did not do a blood volume test. Send me a pm if you want their contact info. I will be happy to send it

Liz

[bellgirl]

Issie, I am still very happy with Dr. Susan Phillips in Birmingham. They only treat the dysautonomia, not other problems that go along with it, though, so she would need to see other specialists, too, but she is very knowledgeable about treatments, meds, and if you need blood work, they do that too. They told me to take my B/P med I was already on before testing, although I wasn't on a Beta Blocker at the time which definitely would effect heart rate on a TTT. She started one med at a time, so she could see the effects, and now I am so much more functional.

[bustersacc11]

Just so you know Vanderbilt just does research. They don't treat dysautonomia.

I have been seen by Dr. Biaggioni over the past 5 years. I have seen him multiple times. Have needed to correspond with him via e-mail regarding my condition and tweeking my medication. Either himself or one of his staff members get back within a few days (not weeks). Dr. B, Dr. Raj, and Dr. Robertson definitely run one the top research centers for dysautonomia. They have treated me off and on the past 5 years and I am aware of others that continue to seek treatment from Vandy. I don't believe it is an accurate statement that Vandy does not treat dysautonomia patients.

[Lethargic Smiles]

Liz, do you live outside of the states and that is how you get Ivabradine or do you use some other method? I've read about this particular drug and always been interested in it. Did he seem interested in looking for the root cause of your POTS? That's what I'm looking for right now. I don't want a doctor who will confirm I have POTS. I want a doctor who is interested in helping me figure out why.

[derekliz]

I live in states, Atlanta area to be specific. They fax a script over to a pharmacy in Canada for the Ivabradine. He has several patients on the medication.

He did the TTT, Echo and EKG. Also norepinephrine 10 min into the TTT. As far as looking into it further, I have 5 years of all kinds of testing that was done and they could not determine from those tests the cause. Many people unfortunately do not know their cause. He did indicate that it could have been from a virus or illness. Prior to my POTS symptoms, I was having strep throat and sinus infections for months. I also had a Positive EBV DNA test.

At first, I was determined to find the cause but I dont know what other testing can be done. I feel like I have had most of the tests already. I had all the tests to r/o pheochromocytoma,MRI's, CT scans all kinda of cardiac tests....all normal. It was beginning to make me alittle crazy so I have just come to terms with it all. He did offer to refer me to Vanderbilt but he did not really feel I would get any answers. My POTS is stage 1....no presyncope or syncope, basically just tachy upon standing, fatigue and some BP spikes. I am going to look into MCAD a little further when I see the hematologist/oncologist next month.

Liz

[Lethargic Smiles]

Thanks for your detailed answer! I have some specific things I want to be looked at (especially EDS) just so I can make sure my treatment approach makes sense. I'm going to start with a geneticist in Chicago (I live near) and go from there!

[bellgirl]

Sorry, Bustersacc11, I'm just repeating what I have been told from another who went there who I know, and they didn't offer any treatment, and told her that she would have to find a doctor elsewhere for treatment and that they only did diagnostics and research there. It's happened to several on this site in fact. You must be special. Do you live in Tennessee? That might make the difference....

[bustersacc11]

Not special but a bit out of the ordinary and it appears fortunate to be given an opportunity for follow-up, if needed. I heard the same thing about the Mayo clinic in Rochester. I just came back from the Mayo this month and Dr. Fealey wants to see me back in 8 months to revisit my treatment plan. I live nowhere near Rochester, MN.

Vandy offering treatment recommendations and explaining to the patient they need to go back to their own doctor(s) for follow-up. That I can understand. Not saying your wrong or the person who shared their experience that it didn't happen or others out there on DINET. It is just hard for me to wrap my head around that either Dr. Biaggioni, Dr. Raj, or Dr. Robertson wouldn't offer any treatment(s) prescriptions, orders, plan, or recommendations to their patients.

I guess being unique has finally paid dividends for me . Thanks for your message and sharing your thoughts on this post.

[issie]

Thanks for the info all - I'll pass it along to my neice.

Issie

[acgraham]

Hello,

I'm new to this forum. I'm going to the dysautonomia and MVP center in Birmingham, AL in a few weeks. I was diagnosed with dysautonomia - vasodepressor syndrome by my cardiologist in October 2012, but I didn't feel like he had a true understanding of the different types of dysautonomia, and therefore couldn't treat me accurately. I was just curious, for those of you who have been to the dysautonomia center in Birmingham, do they test for the different types of dysautonomia? Or is it just testing to see if you have it? After researching the different types online, I'm pretty sure I have hyperadrenergic POTS. Any input would be helpful

Amanda

[bellgirl]

I personal messaged you, Amanda. I think you will like Dr. Phillips. She is very competent, and you will receive good care there. Let me know how your appointment goes. Do you have a good Primary Care Physician? You will need one of those, too, so you can get referrals in your area. Most of my doctors are in Birmingham, but I'm happy with all of them. It is about a 2 hour drive for me, and my vision has been lately, also I get motion sickness, so my husband has to drive me. Now that I am more stable, I don't have to go as often, until lately with my vision, but as I said in my message, it is improving some. I hope your appointment goes well.

[issie]

I'm wondering if any of you are still seeing docs around Birmingham.  I will be moving close to there soon and need to find doctors closer to where I will be.  Any suggestions? 

Issie