Do I Need A Cardiologist And A Particular Heart Cath

[Primetime]

I have had dysautonomia, POTS, OI for about 15 years. I also have an unknown to my dysautonomia. I see a prominent "dysautonomia" doctor. I keep in regular contact with him. However I do not have a cardiologist that I see. My doctor, Dr. David Robertson told me that I have more of a cardiac or heart component to my dysautonomia than any of his other patients. He has spoken to Dr. Raj and Dr. Campbell (two cardiologist) on my behalf in the past. Dr. Robertson feels that it may be necessary to do the following: Below is a partial copy of his email:::::

" Ultimately, however, I think we will have to pursue the cardiac implications of your illness more thoroughly. I attach a note I put into your chart based upon your visit last week. I have placed it in the context of the review of your medical history you and I worked on several months ago. Be sure any physician you see gets a copy of this.

As you will note, in discussions I have had this week with Dr. Raj and Dr. Campbell, I believe we are moving toward a need for a cardiac catheterization. Since it is extremely unlikely that you would have any atherosclerotic lesions in your coronary arteries (the usual reason for coronary artery cath, it must be a catheterization that will address non-traditional issues in the causation of cardiac pain.

It would need to examine not only coronary artery

to anatomy which is almost certain to show little or no atherosclerosis, but also

perhaps coronary sinus assessment of catecholamine, neuropeptide Y and perhaps

histamine to determine if there is selective targeting of the heart with

sympathetic activation which may be causing his illness."

END OF EMAIL

My question to you all is -- Do you think that I should have a cardiologist that I see regularly involved in my care? Do most of you see a cardiologist? I think I would feel more comfortable if I did have one.

Have any of you had the type of catheterization like Dr. Robertson is considering doing on me?

[Primetime]

A quick follow up to my post.

The only heart cath I have heard of before is one that checks for blockages.

Have any of you heard of a cathetor checking on the things that Dr. Robertson mentions. I don't really understand what those things are that he wants to check. If any of you have any input on this, please let me know.

thanks

Primetime

[taylortotmom]

Well, based on what you have written I think it would be a good idea to bring a cardiologist on board- especially one familiar with dysautonomia and willing to work with your other doctors. I have had a few heart caths in the past and no they are not just to check for blockages. You will need to discuss with your doctor(s) about all the possible things they are looking for.

One of the challenges of dysautonomia is we often have rather extreme heart symptoms but our hearts appear healthy. But, sometimes there are some off-the wall things causing those symptoms. So, a heart cath might help your doctors figure some things out or at least eliminate some other possible diagnoses. Good luck!

Carmen

[Guest tearose]

Are you referring to a look see and possible ablation?

I, similar to you have had POTS for years...at least since 1991 for me.

Are you having a lot of heart or chest pain?

I too have no problems with my arteries.

I first suggest you take your time in deciding. You are not in acute distress so let time and education help guide this very critical decision.

I am in perhaps a similar situation as you right now. At my testing at Mayo a few weeks ago, I was not in compression and on the Tilt Table when out of no where my heartrate, which climbed from 80 - 135, suddenly flipped into a PSVT and after several seconds flipped back into a simple SVT. The cardiologists were extremely upset and the EP cardiologists suggested I considered the cath/possible ablation route.

I am not convinced that my heart is in constant psvt mode so I asked for a year to decide. After a whole lot of back and forth discussions, it was decided that for me, for my situation, the doctors and I agreed on a treatment plan, and I know warning signs that I should seek medical attention and not wait.

I do admit I am more worried about a pacemaker failing and complications from the EP study than I am about a once in a blue moon psvt. This is just me though.

I send you support as you go through this very difficult decision process.

best regards,

tearose

[sfrnklin]

Primetime,

I too have cardiac issues along with my POTS. Ultimately I had an ablation to correct two nasty arrythmias I had (contrary to the negative articles against ablations for POTS patients). Dr. Grubb did mine due to his overwhelming belief it would help me and it did. It got rid of my nasty POTSY symptoms that bothered me the most and kept me from enjoying life the most.

If I were you, I would ask that dr. to further explain to me in detail and a language I can understand why he feels I need a cath and what it is he is looking for and what he plans do if he finds something. You can decide from there what you wish to do. It is your body.

I am a cardiac ICU nurse. I see lots of caths done everyday I work. There are risks involved, but I see very few go wrong unless the pt is very old or has had a massive MI.

Good luck on your decision and outcome.

Susan

[flop]

I just wanted to echo the above post - you can't make a decision unless you understand what the doctor wants to do. Perhaps you could have a consultation with him and ask him to explain it so that you can then go away and think about it.

The cath he describes doesn't sound like an EP at all to me. There has been a lot of confusion about EP and ablation in POTS. Basically as I understand it it is a very bad idea to have an ablation to modify the sinus node to get rid of sinus tachycardia - trials have shown that this can get rid of the tachy but makes the POTS symptoms worse in the longterm. However ablating an abnormal conduction pathway such as one that causes PSVT is a different issue and should be discussed individually.

If you find out more about the cath the doctor is considering please update us - I'd be interested to learn more, especially as I think I am highly sensitive to histamine and he mentioned some sort of histamine test.

Good luck in finding the information to empower you to decide about your care,

Flop

[Primetime]

Thank you for your replies.

My main problem is the chest pain and chronic feeling of overstimulation that takes forever to go away after exercise. Although I do have arrythmias as well.

Please keep me posted on your situations as well.

[sfrnklin]

Primetime,

So you do have arrythmias also. What are they and are they documented by EKG or some sort of monitor you wore?

Mine were A Flutter and AV Node Re-entry Tachycardia. That is why an ablation was necessary for me. It did help me 100% and I would do it again.

Without knowing more, I cannot understand why they would do a cardiac cath and not an EP study for a looky see.

But I do encourage you to sit down and talk more in depth with that dr. and let him know your feelings, doubts, etc. about this procedure he is wanting you to have. If he is good and concerned about you, he will have NO problem doing so.

Good luck !!!!!!

Susan

[Guest tearose]

okay so what is the difference between a cardiac cath and an EP study?

I thought a cardiac cath just meant they were putting a cath up to the heart to take a look see at arteries.

I thought the EP study was also a cath but to study the electrical supply.

please explain!

many thanks,

tearose