I'm New - Question For You.

[twinmom]

Hi everyone. I've done a search on Vanderbilt and read a lot of the posts, but I haven't found what I'm specifically looking for, so I hope it's ok to start a new post. I know when someone brings up Vanderbilt, the common response seems to be "do a search" - so I just want you to know I've done that!

A little background on me. I have recurrent syncope, right now of unknown origin. I've had all the cardiac tests, and currently have a medtronic loop recorder in. I recently had an ep study done that showed no electrical problem in my heart, though when I pass out, the loop recorder is showing high heart rates close to 200 bpm. My cardiac ep dr. believes firmly that I have some type of autonomic dysfunction, and is trying to get me into Vanderbilt outpatient clinic to see one of the 3 drs. there. I am only about an hours drive from Nashville, so not a travel problem or anything. When his office called for the referral, they were told it would be almost a year before I could be seen. My question is, is this your experience? I know many of you have gone in for their clinical/research trials - and while I wouldn't be opposed to that, at this point I am just looking for an appointment in the outpatient clinic. Also, I was told that my dr. was to send all my information and I would be contacted directly by Vandy for my appointment. Does anyone know how long this process generally takes? My dr. said he would try and call them personally and see if he could get me in any sooner, but he didn't know. I guess my main questions are just how the process there works for outpatient.

I have also read from many of your post that they don't do follow-up there. What does that mean? Does that mean that I will see the dr. there once or twice to develop a treatment plan that will be carried out by my local physician? I'm so new to how this works, I have so many questions and I don't like the uncertainty of all of this!

Thanks for any help you can offer. I've also read many of you referring to Bonnie - is that someone I need to contact - or who will contact me with my outpatient appointment??

Thanks in advance for your help!!

Dana

[Rachel]

Hello and welcome to DINET. I'll do my best to answer some of your questions.

I went to Vanderbilt for an outpatient appointment last summer. It did take almost a year to get in. If you want to see one of the best doctors for autonomic dysfunction, you will have a long wait. You can request to be put on the cancellation list. Then if someone else cancels their appointment you may be called to come in sooner, but there is no guarantee.

To get in for an outpatient appointment, your doctor needs to send in the appropriate paperwork. Vanderbilt will then contact you with your appointment date. I received a letter in the mail that had my appointment day and time. There was also paperwork for me to fill out and send back in. They also will request your medical records, but you will have to be the one to contact your doctors office and have your records faxed to Vanderbilt.

I don't remember exactly how long it took me to hear from Vanderbilt after my doctor first sent in my referral, but I think it was only a few weeks.

Bonnie Black is the nurse at Vanderbilt who works with the dysautonomia research. If you are interested in going as a research patient you can contact her, but she wouldn't be able to help with an outpatient appointment.

I don't know how follow up usually works at the outpatient clinic at Vanderbilt. When I went there last summer the doctor only had one new suggestion for treatment (I've had dysautonomia for years, and had already tried everything). He said that I could come back again in the future if symptoms changed and I needed further evaluation.

I hope you'll be able to get in to Vanderbilt soon, and I hope that the doctor will have some good treatment options for you.

Rachel

[twinmom]

Rachel,

Thank you for your reply. That is the kind of information I was looking for. It's just so frustrating to want answers NOW and be told to wait a year. Must get out of the instant gratification mindset. I am in the same town as Dr. Amir Zia. My dr. did say that if the wait if it will be a year, he might refer me to Dr. Zia in the meantime. I don't know anything about him, though. I just want to get this managed and feel better. I have 2 small children and I feel like I'm missing out on their lives because I don't feel well enough sometimes to play with them and be with them the way I want to.

Thanks for your info - and if anyone else have additional information, please post!

[Rachel]

Hello again,

I also want to mention that you may be able to get in earlier if you go as a research patient. You could schedule your outpatient appointment right away, but then during the wait you might be able to be seen as a research patient. Going for research isn't for everyone, but it is a way to get in sooner.

I have a little boy, three years old. I know what it's like to be a mom and not be able to do everything for/with your child that you wish you could. I know that your children love you anyway, though. You are their mom, and they will cherish whatever time they have with you, and whatever activities they can do with you.

On those extra tired days, keep things simple. Recently I played Candy Land with my son in my bed. I was too weak and faint to get out of bed, but was still doing relatively "well" all things considered. I asked William to go get a game and bring it into bed. He had a lot of fun with that, and he actually thought it was a treat! When I'm too tired to sit up at the table and eat, I lie down on the floor and we have a picnic. You can get creative and work around the obstacles dysautonomia brings.

This is getting off topic, so I'll stop chatting away now.

I hope you get the answers about Vanderbilt that you're looking for.

Rachel

[twinmom]

If you go for research, do you get feedback on your specific issues? I guess I'm just wondering since I really don't have any type of official "diagnosis" yet.

[lotsicker]

Hi and welcome!

I am a twin mom too and am new to this board. I have 22 month old twins along with 11 and 12 year olds...ALL BOYS. My POTS is still being dx but, my issues are slightly different. While I don't faint, I have extreme HR changes, shortness of breath, vertigo, fatiuge...YOU NAME IT! I don't have any info on the clinic your trying to get into but, I thought you would want to hear from another twin mom.

It is tough having the little ones and not being able to do much. I feel guilty and lazy but, I just can't do it. My husband works 3 jobs because I can not and that makes me feel worse! Some days I feel like I just can't make it (with my hubby always working I have to the kids myself) but, I have no choice. My only saving grace is I know I will get better once I get on the right treatment.

Hang in there!

[firewatcher]

Dana, it took me almost a year to get to Vanderbilt as an outpatient. I had two doctors pushing and calling, but it still took that long and they do not do follow up appointments. They won't even schedule one. You do get to see all your test results and the doctors are very good at explaining everything to you. If you can get in with someone in the meantime, I still suggest you go to Vandy anyway. Both you and they need as much information as you both can get on ANS issues. The doctors will follow up via email after your appointment if you have questions (at least Dr. Biaggioni did with me.) Good luck! and welcome!

[TracyWBoeckmann]

I'm a recently diagnosed POTS patient in Louisville, KY, and am working with my GP to get a referral into Vandy. I understand that it will probably be a long wait. Can you recommend a particular physician? Thanks!

[arizona girl]

I went to vandy about a year and a half ago. I had a long wait to. Then they had a cancellation and moved my appt up by months. I saw Dr. Raj. He deals with the blood volume issues and salt loading. I had a very bad car accident 2 weeks before my appointment which may have effected the outcomes. The testing they did do mainly showed orthostatic hypertension and they were looking for low, so didn't even address it. Most of my tests were done reclining which is my best position, so I wasn't symptomatic like I am in arizona. He went by my history and recommended salt loading and propranol. The salt really hasn't helped me, propranol lowered my heart rate but not the BP.

I asked about tilt table and he didn't give me one. Big mistake! Insist on one and make sure it is scheduled before you get there.

Through paying attention I realized I was only hypertensive and tachy when upright and that I was having supine hypotension. Fast forward my colon ruptures in august, they don't know why. I avoid emergency surgery and in the hospital for 4 days on heavy antibiotics. I was hypotensive the entire stay. The surgeon's like you need to find out why all these abnormal things keep happening, before we consider any elective surgery. He referred me to rheumatologist, they refer me to cardiac specialist because the hypertension was so bad and I google orthostatic hypertension and end up on this web site, reading about EDS vascular and colon ruptures, which led me to the gene doctor for testing. I'm waiting on those results.

The cardiac doc orders a TTT on me because I was so bad when he checked me. I pass out from a hypertensive spike and crash that happened in 5-10 seconds. He also finds some diastolic dysfunction. Now we are addressing it with compression, higher dose pro, and rehab. To soon to tell if it's helping, I'm dizzier with med change.

If I'd had that tilt table done sooner, maybe it wouldn't have taken so long to start really dealing with this. I will be updating Dr. Raj this week, to get his take on it, because I'm a bit atypical. I do have syncope though and pots, thats for sure. The cause and/or what type remain to be seen.

The only follow-up with Vandy was because I called them. Once you have an appointment you can join their Vandy health online and they will correspond with you that way. I would ask them exactly what tests they will do. Have you doctor request a Tilt table if it's not included before you get there.

Good luck with all this