Hi Sarah,
There are still a few things that are not clear to me -
If your POTS diagnosis has been confirmed, does your cardiologist means to say that on top of POTS you have an arrythmia that needs an ablation?
What kind of problems those 'unruly' cardiac cells are giving you, according to him, and what good will it do to you to have them ablated?
Those are the arrythmias for which an ablation can be beneficial -
AV Nodal re-entry tachycardia (AVNRT)
Accessory pathways
Ventricular tachycardia
Atrial fibrillation and atrial flutter
IST
If you do not suffer from any of those, I think that you should ask for a second opinion. As stated in earlier posts, there are real chance that an ablation will make your POTS worse or will be a waste of time.
Don't feel pressurized to go ahead, it is better to delay the ablation and acertain that it is the right treatment for you than to go ahead and regret it.
I know that the Mayo in Minnesota treats international patients, I would assume Vanderbilt University Autonomic Disorders Clinic and Cleveland Clinic would too. I understand traveling (especially to a different country) is hard so I would start with calls. Maybe ask if they have any research material you could access.
I would at least speak to a Neurologist being that POTS involves your brain and ask their input before you have anything done.
Hello everyone! Thank you very much for your prompt response! I went for my pre ep study and ablation. It was explained to me that they will be ablating for unifocal atrial tachycardia. Now, with them ablating for this arrhythmia. 1) do you still suggest I get a second opinion prior to ablation? 2)The cardiologist told me he would steer clear of my SA node and AV node. . . If the arrythmia focus is too close to these nodes he will not ablate. Is it safe to have this type of ablation with a POTS diagnosis? . . . My procedure is coming up soon (July 2nd) I am scared to have this procedure done, I almost feel they are grasping at strings trying to get my hour down. I live in canada so I am not sure vanderbilt or the cleveland clinic is an option for me. The only doctors I have within traveling distance to me that are familiar with dysautonomia; more specifically POTS are the doctors that are at the Arrhythmia Clinic I am a patient of. I want to say "thank you" to everyone who has supported me throughout this! I have not posted very much but you all have been wonderful help answering my questions!
If you need the contact information for the dysautonomia clinics that Kav mentioned above, you can find those on our health page here:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
I am sorry I do not have the links but wanted to post right away. In addition to the information above I would call Vanderbilt, they are doing large amounts of research to treat autonomic disorders, including POTS.
I am sure they tried doing ablation early on (years ago) and had to install pacemakers in the patients after.
Just as anyone has said get a second and third opinion.
If it were me I would call Vanderbilt and speak with someone, I would at least see if they have done research in this area.
If they can't or won't help I would call the Main Mayo and the Cleveland Clinic
Good luck!
You need to get a second opinion BEFORE going forward with this ablation!!!! Generally speaking, ablation is *contraindicated* in POTS and can actually worsen POTS *permanently*. This is documented by highly-respected experts in this field in peer-reviewed medical journal articles such as these:
http://www.springerlink.com/content/hn915h7875u72206/
(Win-Kuang Shen, Division of Cardiovascular Diseases and Internal Medicine, Mayo Clinic, Rochester, Minnesota, USA)
"Sinus node modification could be considered in patients with inappropriate sinus tachycardia with persistently increased heart rate IN THE ABSENCE OF ANY AUTONOMIC ABNORMALITIES. Autonomic laboratory testing should be performed to exclude any evidence of autonomic dysregulation." [emphasis added]
(POTS falls under the umbrella of "autonomic abnormality" they describe" and though I'm not looking at the full article at the moment, if I recall correctly this article does specifically mention that ablation outcomes are not positive for POTS.) This quote is just from the abstract; to get the full article you will need access to medical journals through a hospital or university library, through interlibrary loan (interlibrary loan of journal articles through public library systems involves photocopying and typically involves a fee for the copies, which will nonetheless typically be smaller than the fee for buying the article outright from the publisher), or you can buy the article outright through the publisher (can be rather costly, often roughly $30-40/article).
http://www3.interscience.wiley.com/journal/119932455/abstract
Pacing Clin Electrophysiol. 2000 Mar;23(3):344-51.
The postural orthostatic tachycardia syndrome: a potentially treatable cause of chronic fatigue, exercise intolerance, and cognitive impairment in adolescents.
Karas B, Grubb BP, Boehm K, Kip K.
Department of Medicine, Medical College of Ohio, Toledo, USA.
This one very directly addresses detrimental outcomes of ablation in cases of POTS; I can't get access to the full article on such short notice but I wanted to respond ASAP to warn you that I would STRONGLY advise you to get a second opinion before going forward with this ablation. The effects are permanent and the experts in this field have documented that ablation can cause worsening in POTS, rather than improvement. At the very least, please get access to these articles and ask that your doctor read them and take them under advisement before making the final decision about the ablation.
Best,
-Heiferly.
Hi Sarah,
I'm not surprise that you are confused; I would be too!
What I find most startling about what your Dr said is when you write: "He stressed the fact that if I had POTS they would not do an ablation until at least my POTS symptoms have subsided a bit and were under control."
If your POTS diagnosis has been confirmed, then I think you are right to think that an ablation is not a good idea.
To my knowledge (other people hopefully will correct me if I'm wrong :-) ), ablation is only indicated for Innapropriate Sinus Tachycardia (IST), not POTS.
But the two conditions can be difficult to tell apart.
I got this from one of Dr Grubb article -
✴ SIMILARITIES
Both conditions have the same presenting symptoms, and both afflict women predominantly. In both conditions, individuals will display an exaggerated response to Isoproperenol infusion.
✴ DIFFERENCES
In POTS - The variations in heart rate on change of position is more pronounced.
- At rest, the heart rate rarely goes beyond 100 beats/minute
In IST - At rest, the resting heart rate is often greater than 100 beats/minute
- The change in the serum norepinephrine levels is not as marked on change of
position as it is for the hyperadrenergic type of POTS.
He goes on saying that -
It is extremely important to differentiate between these two conditions, as the treatment options are quite different.
In particular, ‘radiofrequency catheter ablation’ of the sinus node can make individuals with partial dysautonomia type of POTS much worse, and does not seem to help individuals with the hyperadrenergic type of POTS.
I hope this help.
Keep us posted :-)