Experience With Dr. Jaeger At The Cleveland Clinic?

[Krissy21]

I have been a patient at the Cleveland Clinic for a while now but I have not seen Dr. Jaeger before. I have an appointment with him in April and I'm just wondering what I can expect. What tests did he order for you? Was he helpful with finding the cause of your POTS and with figuring out a treatment plan that will work for you?

Some background info that might be helpful: I'm a 21 year old female. I have Inappropriate Sinus Tachycardia and my EP thinks I may also have POTS so he referred me to Dr. Jaeger since he specializes in this. I have already had a blood volume and hemodynamics test (normal blood volume, minor to moderate blood pooling in legs), autonomic reflex test (normal), a QSART (normal), echocardiogram (normal), and countless EKGs (sinus arrhythmia but otherwise normal), and several holter and event monitors (showed average hr of about 100 bpm which diagnosed the IST). I have not had a tilt table test yet due to insurance not covering it. Also, I used to suffer from PSVT which got progressively worse until I was having 4-5 attacks a week and had to have an ablation done to get rid of the extra pathway. I had this done in December 2011 and so far it hasn't returned but my IST and POTS symptoms are still here. I have been on several different beta blockers. I'm currently taking propranolol. I also tried midodrine which did nothing for me and gave me terrible headaches and head pressure. I think that covers most of it.

[Joann]

I haven't seen Dr. Jaeger yet, I have an appointment with him in April also, so I am interested in an answer to your question. I did see Dr. Shields this week, he is neurologist that is an associate of Dr. J. and he is the one who wants me to have a consult with him. I am scheduled for an entire day of many of the tests you already have had. Made the trip to Cleveland and was hoping I would get the tests while I was there, but they are so booked, I will be traveling back. They were only able to do some of the lab work.

I have had problems for 16 months, the wait for each specialist is so long, that who knows when I will finally get some actual answers. I was hoping Dr. Shields would have the answers, but now I am hoping Dr. J. will! My past doctors have told me they feel I have a form of POTS. Dr. S. says he is not sure, looks to be something autonomic, but maybe not POTS. So, that seems like a step backwards.

I have heard really good things about Dr. J. So I hope he helps you and me! Wish you the best, sorry I don't have much to tell you, except I was really impressed with the Cleveland Clinic.

[trice125]

I went to the cleveland clinic the week before Christmas for dysautonomia. Originally I was scheduled for 4 tests (tilt table- abnormal only because of my high heart rate, hemodynamics- more on this later, QSART-normal, and EKG- abnormal due to being on digoxin which Dr. J took me off of that day). I ended up being there three days because after Dr. Jeager saw/talked to me he decided to add more tests (echo, stress echo, 30 day heart monitor, lots and lots of blood tests plus one more autonomic test that I can't think of the name of) and consults with doctors (neurology- very little help and GI- no help at all).

I also go back at the end of February for more testing (mainly the hemodynamics test since it's supposed to give them a lot of information which they were unable to when I was there the first time because they couldn't get a big enough IV in my arm) and I also have a follow up appointment with Dr. Jeager. We are planning on staying the the hilton garden inn this time around because their rooms are a lot bigger and nicer and their shuttle runs every hour.

I only saw Dr. Jaeger on the first day (during which I spent double the amount of time with his nurse than himself) and then I had testing and other appts during the rest of the time there. I was told that he would send me a copy of his report once he got back all of the test results (which took extra time since I had to do a 30 day heart monitor). Once I did finally get his report very little of it made any sense to me. I did not get an "a-ha" moment and my PCP did not either after reading the report in front of me. I mean they did find stuff but that just created more questions that answers. The report did suggest some lifestyle things I can do and some medications we can try though. My mom and I are hoping to get more clarity when I have my follow up appt at the end of February.

[Guest wishing&hoping]

I' m seeing Dr. Shields in 2 weeks; am puzzled that they asked me to fax EMG reports when my schedule is cardioinhibitory syncope. Glad to hear you had a good experience as I'm wondering whether I' d be better off at Vanderbilt.

[Krissy21]

Thanks for the responses. I'm really hoping he can give me some answers. This is such a frustrating illness, as I'm sure you all know. Being in college and away from home makes it even more difficult so figuring out exactly what's going on and the best way to treat it will be extremely helpful.

[trice125]

Krissy21- I know how you are feeling. I'm only 26 and tried to do the whole living in the dorms thing while in college but my illness just made it too hard. Luckily my college wasn't too far to drive back and forth each day and staying home allowed me to have family support. My opinion is that you may not get answers that day, he told me directly that he likes to have the whole picture before he makes any suggestions, recommendations, etc. and some of the tests have to be sent out or at least this is what I was told.

[Monstrosity]

He diagnosed me. Great for the cardiology part of things. He will rule out the heart has any issues and then send you to a Neurologist.

[Joann]

Krissy, wondering if you had your appointment yet? and how it went? I saw Dr. Jaeger last Friday. He spoke with me for about an hour. Then I went on for testing. He really seemed to be listening and didn't make me feel like I was crazy. He said I should call the office later this week to get preliminary results. Reading Trice125's response has me a little worried.

I am hoping he gets back with me and follows through, he said we would do the scheduled tests and then probably do some more later to check for a couple other things. I really felt hopeful after talking to him and another doctor (Dr. Browning, she is part of National Council/Grand Consult). I had another doctor from another university make me hopeful on the first visit and on the second appointment I was so disappointed. So I am hoping for a much better outcome with Cleveland.

I think one of the tests may have caused a flare for me. I am wondering if any of you had the test where you have to blow into a tube really hard and keep it at a certain level for a period of time, If you had it, did it cause any problems? My head and neck felt some pressure with this, but not bad, but about 4 hours later when I got home from the trip, I began to feel bad. Every time I got up, or bent over, the top of my head and my neck felt pressure and discomfort and I began to have pressure below my sternum. Plus nausea and burping and gas! I couldn't even go pick up my daughter at her friends house. Since then I am unable to do much of anything I am wondering if it is something in my neck. The doctors I saw did say they would like to have this area further checked (i have had an mri, xrays and ultrasound of caroid (sp? arteries).

Anyways, just wondering how your experience went. I am still waiting, just hoping that they continue to be as great as they have started out.

[Krissy21]

Yes I had my appointment with him on the 12th. I liked him a lot and definitely felt like he was really listening to me. He is scheduling me for a tilt table and a stress test for when I come home from college in a couple weeks. He said after we get those results he may order more tests or try some new medications. It does seem like he wants to figure out what exactly is going on before deciding on a treatment. He did tell me to eat 5 grams of salt a day, drink a lot of Gatorade, wear compression stockings, and keep taking my beta blocker. I have done the test with the tube that you mentioned, but I didn't have any reaction to it. It was part of the autonomic reflex test. I've been going to the Cleveland Clinic for a while and they have been awesome so far so I'm confident that they will figure out what is going on and how to help. I hope you get your results soon so they can figure out what's going on and how to help!

[Joann]

Since they don't know exactly what is wrong with me, and I have high bp surges instead of low, he couldn't offer me much to do while waiting. He did say, I should try and drink more gatorade/powerade than water. I had been drinking equal amounts or more water, before. I try to avoid sugar substitutes, but I may need to start drinking zeros, cuz that much sugar can't be good. I had a bad experience to the compression stockings, so I guess I just have to wait for more answers to have more solutions. Oh, I am on two bp meds too. They were talking about maybe stopping one and I don't want to do that until we have more results, because I feel that they have helped me a bunch.

I guess, my fear is the doctors saying they can't help me and don't know what is wrong with me. I don't mind making the trip, if they can figure this out. Both doctors I saw this time, did say that if these tests don't show anything they do want a special test for my neck. Its not an mri, I've had that. I think its called an mra, it could look at the arteries in the back of the neck. They said it was rare, but since I do have problems there and used to get my neck manually adjusted when this started, their is a slight possibility of some damage to them. I think having this knowledge and now feeling so bad , especiallly in neck, chest and head, after doing that blowing test, is freaking me out a little. They told me to wait until later in the week, but I so want to call today. I am trying to wait until tomorrow to call. I will probably be calling first thing in morning. LOL

[trice125]

I'm interested in how he follows up with you guys. Originally I was supposed to go back for one more test and a follow up appointment with him at the end of February (I saw him for testing and my first visit in the week before Christmas) but I got the flu so it was push backed because of that until tomorrow. Then his office changed it again to where it isn't until the middle of June because he's going to be at a conference on that date and then he's on hospital duty for most of the month of May. Until then though we have his report that most of my doctors here don't understand or know what to do with.

[margiebee]

I had my appointment with him pushed back to June as well, I was wondering why that happened! I have seen him 2 times before, the first time he gave me the "poor man's tilt table" where I had a pretty strong reaction and then again for the real TTT where again, I tested very positive haha. I do like him a lot, the only thing I have disliked is the nurses at his office seem to be very unhelpful (i.e. they wouldn't tell me why my appointment was pushed back at all). Makes it more difficult to get into contact with him.

He does want to continue testing on me with the hemodynamic test and so forth, but apparently this is only to figure out what's causing my POTS so I can have a treatment that's more tailored to me. He also seemed to understand how extremely sensitive to meds I am which I appreciate so much, I can't even explain how many doctors have tried to start me on full-on adult doses of meds and said I'd be fine. I feel on the right path with him

[Joann]

Well I called his office for the preliminary test, like he told me to and I was told the nurse would call me back within 48 hours. Since this is Thursday, I figure there is a good chance I won't hear from them until Monday. If he is out of town, like someone suggested than I wonder if they will be tell me anything, until he is back.

I get so impatient, especially during a flare. I am sick of the people around me asking me how can the doctors not know what is wrong with you for so long. Ugh. They way it is said you can tell they think you are plain crazy, even when they have seen me in the middle of one of these episodes.

Plus I could kick myself for not being more forceful. He mentioned a 30 day monitor and this neck test and also two other tests. He said he was going to see if they could squeeze in some them that day, but when I asked about it at the scheduling desk after the appointment they said he hadn't given them any orders for them yet. So... I am waiting, I should have had them go back and ask about it. They should have done that without me asking, but as I am sure many of you have found many things don't get done unless you push for them. Now I am going to have to wait, and I really would like an actual diagnosis before I hit the 2 year mark! Yes I am really a whiner today.

I will say that its the only place so far that doesn't seem to be fazed by all of the strange symptoms. Oh and one fun item. When I got my EKG done the tech told me he sees people from all over, he has had kings and queens and celebrities. One of his first days on the job, he met a celebrity. That is pretty cool. Those people have connections and money and they are going here, so I find that encouraging.