AV Fistula from catheter procedures

[oldtrout466]

Hi I am 47 yr old female from UK. There is 1 previous entry aboutmy question  but in 2009 so I would like to ask if there is anyone out there who has experienced inadvertent perforating of the femoral artery  -when aiming for the femoral vein?? And if so did it heal ok? Did anyone else end up with a fistula -Please see account below. Thanks
I had a PFO closed 6 years ago by catheter and the catheter was threaded across the femoral artery before going into and up the vein. On withdrawing it, I bled profusely and it took 2 hours to stop using a huge clamp called a 'femstop' clamped on my thigh. I was then informed that a 'fistula' may have formed -which is when the holes in the artery and veing heal together linking the 2 blood vessels. An ultrasound scan supposedly showed it was ok and i was discharged. 1 week later I developed ectopic beats -never having had a symptomatic heart problem before -which was put down to the catheter having  irritated the heart and took Flecainide for 18/12 then told I was fine.
I have since spent the last 6 years with increasing ectopics, atrial tachycardia and eventually a marked arrhythmia, the last year on Flecainide again accompanied by fatigue, pain in my stomach, leg, groin and my ability to carry on with life and work started to fall apart. Throughout I was told it was a tachycardia - for various different reasons - and that the only way of knowing was to do a catheter EP study. I was not about to let anyone near me with a catheter again so went to a vascular surgeon Nov 2011 to clarify the state of the blood vessels and whether it would be safe to use a catheter.
I was traumatised to find i had an 8mm hole joining my femoral artery and vein, my vena cava returning to my heart had doubled in size and it would lead to heart failure if left! No one had ever seen a fistula left undiagnosed for 6 years -so in Jan 12 I had major surgery to repair them - with risks to life, limb and lymph system. I truely thought i was going to die in the process as did my kids. Anyway -I have survived, vessels separated but a huge, painful scar as it is from the stomach, through the groin and onto the thigh! I have some lymph swelling in my hip which i have been having to massage 3x a day. and some muscle/tendon/and nerve damage which i hope will keep improving. All because they did the wrong sort of scan at the time of the op. and didn't diagnose the fistula.
Interstingly, since my blood supply is back to normal, the tachycardia has stopped -just the odd ectopic when I stop esp at night.

[Jerry_NJ]

Hi, I "Jump in" late just to let you know you post is being read.  Happily, it seems, there are no others who read posts on this board have not had similar experiences to share.  I hurts just to read what you have gone through, hope you are now on the mend.

I think others who read you post will be encouraged to challenge medical diagnosis that don't seem to fit/address their symptom experience.  I say this in given I have considered pushing for an ablation to stop my AFib, but haven't done so. That said, my symptoms respond well to medication, I remain in permanent AFib, but I am unaware of it other than for some of the side effects of the meds and a lack of energy (age doesn't help me on that point either).    To, I had a mini-maze procedure done on my heart when I was open for a mitral valve repair, and that didn't stop the AFib.  The two catheter examinations I have undergone have also gone well with no complication, but you catheter experience scares me going forward should any additional catheter work be needed.

I know nothing about he specifics of your post (fistula) but offer the above in the hope that you'll gain something knowing in the absence of help there is at least learning and sympathy here in the "Internet" heart rhythm community.

[oldtrout466]

Thanks for your kind words and thoughts. I hope my experience doesn't put you off a catheter procedure IF that would be the right thing for you - Ironically I have found reading the hundreds of posts by people for whom catheter procedures have been a great success very encouraging! I have of course complained to the hospital concerned and queried why the catheter was inserted without ultrasound guidance  -it was standard procedure at the time but now all catheterisations are done under ultrasound. I was also under GA at the time as my procedure involved a TOE to guide the insertion of the Biostar device so there was no way i could alert them of any strange sensation.
I am always amazed when people like yourself have AFib or other arrthymias but don't notice it - but thats a good thing and allows you to make a choice not to have invasive treatment. I'm keeping my fingers crossed that my heart rhythm problems were mostly caused by the fistula -but time will tell. I am considering returning to work now so I am feeling more positive than for a long time!

[MichelleP_3811]

I had a cather ablation for avnrt last year and I did not feel any of the cathers going in but I did feel one of the last ones coming out so they may have rubbed the side of the vein or something but I didn't have any sort of rupture issues like you did.  It does sound as though it is a very rare complication and very unfortunate for you.  It is also good you persisted in your concerns as it may have saved your life.  My hope is that now that you are on the mend your heart will be on the mend as well.  Our hearts are very reslient.  From what I understand a person can develop cardiomyopathy from tachycardia at some point.  Most won't but it can happen but if it does and the tachycardia is resoloved then the cardiomyopathy goes away.  I have pvcs and they became quite noticable after my ablation.  I am six months out now and as the doctor predicted I am feeling them less and less and may very well get to a point where I don't feel them at all.   In a similar vein it is very likely these symptoms you are feeling now will subside with time since you have gotten yourself fixed.  It may take a while but who knows.  A year from now this may all be a distant memory for you.  That is my hope.  Take care and keep us posted on how you are doing.

[oldtrout466]

Thanks and hope you continue to recover. Due to see cardiologist tomorrow and I shall have lots of questions!!

[oldtrout466]

Well the cardiologist was very surprised my tachycardia had virtually stopped since the closure of the fistula. Basically my heart was under so much strain it was pounding away to keep up! Good job i was fit and healthy in the first place! Had another echo to check it hasn't damaged my heart but awaiting results of that but Dr seemed to think it was ok. the cardiologist had been considering diagnoses of IST (as I had) or POTS -which i have since been looking up. I don't think i fir the criterai for either really now BUT my BP is steadily going lower and lower and I feel dizzy lots of the time. Anyone any similar experiance after their tachycardia has been treated?? Still got some ectopic beats but think i might be stuck with those.

[MichelleP_3811]

That is definitely good to hear you are doing better.  I would say if your bp is getting too low maybe add a little sodium to your diet if it is OK with your doctor.  Also make sure you stay hydrated.  I have to watch these two things myself or my bp can get too low.  As for the ectopics they may indeed stick around but as your heart rests from all the stress it was under you may notice them less or they may in fact go away.  For some they do disappear.  I noticed mine a lot after I had an ablation for svt and now about 7 months out I am feeling them less and less so it may be a bit slow going since the heart has to heal while it is still operating but it does indeed have a great ability to bounce back from a lot.  Take care.

[oldtrout466]

Thanks for the encouragement. The cardiologist who did my echo the other day said that the muscle memory of the heart takes about 3/12 to remodel after change but the electrical memory/irritated areas can take up to 6/12 to remodel - so i guess it makes sense -and also I have noticed numerous people on this forum saying similar after ablation. Here's hoping. Back to work next week so the stress levels will go up!!!!