The worrywart

[LisaColumbus]

Hi all,

I mentioned that I recently found a doctor in my area that seems to understand POTS. At the last visit she put me on Midrodrine and also has me on a 30 day event monitor. I have been on the monitor for a week now. Today I got a call from the nurse at the doctor's office. The doctor has reviewed a weeks worth of recordings and says she knows what the problem is and wants to see me Monday morning. All the nurse could tell me is that there is a problem with the reentry pathway that causes it to loop. The dotor says she knows how to fix this. Has anyone else heard of this? I'm going to be a wreck all weekend thinking about this. I'm already sure that she is going to suggest ablation...I'm probably just paranoid. How else would they "fix" this? If she does suggest ablation...what then? I have read posts here saying that ablation is the last thing that should be done. Aggghhh I wish I could just shut my brain down until Monday!

Lisa

[EarthMother]

I think it is irresponsible for doctors to leave terse messages with their staff that say we should come in and then we need to wait days before they can work us into their schedules.

You may want to consider calling the office back and saying you want the doctor to call you at the end of the day when they are through with patients/rounds and discuss this "new news" with you briefly.

Keep in mind, this is your body and you have the ultimate choice on what to do. Take all the information, take everything in you can find ... then sit quietly .... often the answer comes from within our own inate wisdom.

Good luck on your healing journey.

EM

[Laura]

Hi Lisa! I am sorry that you have to wait all weekend to talk to your doctor! It's good to see that she has identified the problem and thinks she knows how to fix it!! That would be a wonderful thing.

When I first got sick, they thought that I had AV node re-entrant tachycardia, which is a conduction problem in your heart that causes a re-entrant pathway. (You could look this up on google for a better idea of what this means) There are different forms of re-entrant tachycardia, and they can sometimes see indications of it on an ECG. I agreed to have an EP study done, and they checked out all of the conduction pathways, and didn't find anything wrong. If they had, they would have ablated the area that was causing the problem (with my consent), and most likely it would have solved the tachycardia. Because nothing showed up, they did further testing later on, and determined that I had POTS.

You are right, with POTS ablations tend to be a very bad thing. However if you have a re-entrant tachycardia, that is a whole other area, and ablations can potentially completely fix the problem. Alternatively, you can choose to go on medication long-term to control the conduction problem.

I am sure your doctor will fully explain everything to you, and give you every available option, if this is what she thinks is happening. Please try not to worry yourself sick all weekend! Ask any questions you need to here, and I'm sure we'll all try to answer and help you through to Monday as much as we can! Laura

[morgan617]

If you have a lot of other symptoms besides the tachycardia, I would have this cardiologist talk to an ans specialist before I agreed to ablation. If your only problem is cardiac, ablation can be great, but if the cardiac problem is caused by pots, then ablation can be very bad. I know this from personal experience! And I agree, it's a terrible thing to make people wait after statements like that. if you don't call them, I would let them know what a crummy thing that is to do. morgan

[LisaColumbus]

If you have a lot of other symptoms besides the tachycardia, I would have this cardiologist talk to an ans specialist before I agreed to ablation.  If your only problem is cardiac, ablation can be great, but if the cardiac problem is caused by pots, then ablation can be very bad.  I know this from personal experience!    And I agree, it's a terrible thing to make people wait after statements like that.  if you don't call them, I would let them know what a crummy thing that is to do.  morgan

<{POST_SNAPBACK}>

I do have a lot of other symptoms. In addition to the POTS I was dx's with chronic fatigue syndrome. So I am not sure which symptom goes with which lol. I have extreme fatigue, I can only be up an hour or two before having to sleep again. Typically sleep 12-18 hours a day. Daily headaches and migraines at least 3 times a week, IBS, dizziness when standing but I only pass out 4 or 5 times a year- I can feel it coming on and can usually get down before I go out, painful hips, confusion, memory loss, hot and cold flashes etc. I only get tachy when sitting or standing, when laying down my heartrate stays between 35 and 45. Heck if it all confuses me I don't know how the doctor can figure it out! If they do an EP study before ablation, can they tell for sure if it is cardiac or POTS?

[morgan617]

Sometimes you have an extra node that shouldn't be there and can trigger arrythmias. This is only my story Lisa, but I went for EPS and ablation. They did find an abnormal area, but did not call it an extra sinus node. I never worked again after that ablation. I believe they took away the only way I had to compensate for my other symptoms. i have a lot more arrythmias now and i can feel my heart wanting to beat faster and when it can't I just have more arrythmias. I am very angry at my cardiologist, I don't see him anymore, because he thought it might be pots related and did it anyway, without taking 15 minutes to call an expert and get their advice. Many have ended up with pacemakers. I can honestly say I haven't seen a single post from a person with autonomic problems that benefited from this procedure. I might be wrong, but i think you have way too many other symptoms that show your heart rate is caused by pots and not the other way around. I'm not telling you not to do it. Only you and your doctor can decide that. But I am asking that you insist he discuss it with an expert on pots first. For your own sake. Ablation definitely has it's place, but i don't believe it's a potsplace...morgan

[steph37822]

oops

[LisaColumbus]

Hi Steph,

The doctor I am currently seeing is an arrhythmia specialist at Riverside, Dr. Arshad. I was originally a patient of Dr Hummel (our family has not had good experiences with him), I then was referred to Dr Grubb (who I adore), when Dr Grubb became ill I went to the Cleveland Clinic hoping to have a backup doctor. After getting testing done in Cleveland, my primary care physician was frustrated with the lack of help he was getting for my follow up care and wanted to me to find a local doctor. So that is how Dr Arshad came into the picture. Are you familiar with any of these docs? I would love to talk with you in more detail about your experiences with local docs but I'm not sure what the protocol is on the boards as far as relating negative experiences.

[guvna2004]

Hi,

Sorry to hear about this, but stay calm my prayers are with you.

My dads friend was a relitavly fit man, went to the gym, but used steroids which i know can cause health problems. He had very bad stomach pains for days he said, so he went to the hospital, they put him on the stomach ward for 3 days until they found out the problem was his heart. He has a leaky valve, im not sure what this means but he had to have his heart shocked in order to get it back to its normal rythm. I still think the NHS are chap and act quickly without diagnosing the problem properly, his problem could have been pots or something else, im not sure but i know that some doctors can diagnose wrongly. Just make sure you doctor can confirm fully that your problem is what he says it is, and take a dictafone with you because there playing with your heart, if they get it wrong it can bring on more problems.

[Guest tearose]

Hi Lisa!

I am sorry for the lack of thinking on the part of some of those in the medical community and for the waiting but you are wise to do a lot of thinking and information gathering while you wait!

I am very concerned about the possibility of the ablation...from what Mayo, and current research and literature shows...it is not going to help POTS. It is helpful in cases of a more heart related electrical problem as many above and you discuss. (the extra loop) Please proceed with extreme caution and even though you will need to wait ...get another opinion! Even the "go in and look and see approach" is invasive and has risks, why put yourself through that?

Forgive me for asking if you have said somewhere already...Have you had a complete ANS workup?

good wishes, tearose

[steph37822]

oops

[LisaColumbus]

Hello all,

I am back from the cardiologist and sure enough she recommends ablation. She says that I have POTS as well as SVT caused by an extra electrical circuit-left sided bypass tract. She says by ablating this extra connection it will not effect POTS because it isn't in the upper chambers and that this problem is a totally separate issue that has no correlation to POTS. Apparently this circuit is in the left side of the heart, so they would have to enter through the right side, puncture the central wall and work their way to the left posterior side of the heart. I have a call in to Dr Grubb, hopefully I can get a second opinion from him. She did say that if I have this done there is a 95-99% chance that this will get me back to a fairly normal state and that this problem has many of the same symptoms as POTS. She said I may be surprised at how many of my problems are caused by this other disorder and not necessarily caused by POTS. So that's the latest news.

Lisa

[MomtoGiuliana]

DEFINITELY get a 2nd opinion from a specialist in autonomic dysfunction.

Katherine

[LisaColumbus]

Wow. I have already heard back from Dr Grubb. I can't believe how quickly they got back to me. According to Dr Grubb, this type of ablation is fine and will not cause problems with POTS. So, it looks like I will be heading in that direction. That is, if I can make my scaredy cat self go through with it. Deep breath

[Gena]

That sounds like good news for you Lisa. I pray that it goes well for you. I know it can be scary. Just make sure that whomever is doing the ablation is very experienced at these things. I have a co-worker who recently had an ablation done by an electrophysiologist here in Florida and he botched up the procedure and now she has to wear a pacemaker. I'm not telling you this to frighten you, just to make sure you get someone with good experience and credentials. It turned out this electorophysiologist in my town is not even a cardiologist - he is just a primary care phys. who somehow specialized in electrophysiology?? and didn't have the credentials necessary to perform the procedure at this hospital, but somehow he's been getting away with it.

Anyway, I'm sure you'll be fine and at least you got the go ahead from Dr. Grubb.

Gena

[steph37822]

oops

[Ernie]

Hi,

I am glad that Dr Grubb called to give his opinion. I know he is the best but I would look around before making the move.

Ernie

[danelle]

Lisa,

Have you had your ablation yet? I am getting ready to make a post about my situation and just wondering how yours went.

danelle

[morgan617]

Good luck Lisa, don't frightened. Easy to say, but having been there I can tell you, you will just doze through the whole thing. They give you amnesiac meds, so you will get a good nap in. I'm glad Dr, Grubb got back to you and okayed it! I hope this does the trick for you. Keep us posted! morgan

[LisaColumbus]

Thanks Danelle and Morgan. I haven't had the ablation yet. It is scheduled June 3rd. I wanted to wait until after my sons graduation...just in case. I'm doing ok right now, I'm sure I'll be a basket case in a week or so Hopefully this will give me my life back, but being the pessimist that I am....I doubt it will do the trick

[danelle]

Lisa,

It sounds like you are in with an excellent group of doctors who know what they are doing. I have personally seen Dr Grubb myself. I wish you all the luck in the world and I hope it does give you your life back. If it does, save me a bed cause I'll be headed in that direction (I'm from NC)

Hugs,

Danelle