Please Help!

Hi. I am new on here today. I live in the UK. I have been reading all your messages on here for a while, to try & learn more about my situation. It seems that some of you have been through similar, so I am writing in the hope some of you might be able to help me please.

I was diagnosed with IST 15 months ago. My EP has tried beta blockers & calcium channel blockers to try & control my symptoms, but they didn't work. He put me on Ivabradine in February, which did slow down my sinus node & stop my symptoms. Great news. But, suddenly 3 weeks ago, all my symptoms have come back despite still being on the Ivabradine. I am already on the max dose (since March) so I am very distressed to be so unwell again.

I am seeing my EP on Monday (been given an urgent appointment by hospital). My query is this. Last time I saw him in Feb, he said that if the Ivabradine failed to control my symptoms, his only other option would be to do a sinus node ablation & possibly have to put a pacemaker in (if he has to do a total ablation rather than a sinus node modification). It all sounds very scary!

I know I haven't got a pacemaker yet, so I hope you don't mind me posting this on here, but I thought as you all know lots about them, please could you tell me what sort of questions I should ask my EP on Monday as far as putting in a pacemaker goes? Also, have any of you had a sinus node ablation or modification? Are there any specific questions I should ask him about it? It sounds so final to me but having been off work 11 months, then got back for 3 months, & now off again & totally incapacitated by breathlessness, dizzy spells, chest pain & terrible fatigue on minimal exertion...I am getting desperate to just be normal again & be able to function again! My IST symptoms have always been very severe & quite disabling, which is why the EP has been trying drugs to control the symptoms.

I had an EP study in January so I know what to expect during the procedure as far as catheters go etc but he said the procedure of sinus node ablation is quite unpleasant for the patient, which scares me. Do they give sedation?

Anyway, if anyone can help with advice or tell me about your own experience, I would be so grateful. Thank you.

Best wishes
Janey L

3 Comments

grrrrrrrrrr internet cutting in and out

by Hot Heart - 2010-06-10 02:06:38

so gotta be quick hi from another Brit, just spend a bit of time on here, read old posts and comments, loads of info

good luck HH

WELCOME ~ ~

by Carolyn65 - 2010-06-10 12:06:02

Welcome to your PM Club ~ it is great to have you join and share your comments with us. We are so glad you found the PM Club. So many people on here have good, educated answers.

Janey, the most unpleasant thing for me during my whole ablation/PM implant in 10/09, was the post-PM. After surgery, the incision made to make you a 'pocket' for your PM is a lil' sore and will be for a few days. If anything is needed for the uncomfortable feeling, a good Tylenol works. I asked for a prescription pain med to be used the first couple of nites, but did not need it after that.

The most unpleasant thing after the PM implant, was remembering to follow your Dr. orders, after you start feeling better. Do not lift more than the Dr. told you for the length of time, do not raise your arm on the implant side above your heart level to protect your leads for a few weeks and generally listen to your own body and what it tells you about your self. Have a salon wash your hair the first coupla times.

Sedation was used on me, but that was mainly to 'shut me up' ~ I tend to talk/chatter non-stop when I am nervous. I don't think the surgeon, anesthesiologist, nurses, etc. could get a word in 'side ways' until they 'knocked' me out! ~ They kept me over nite just for observation because I live in a rural area away from hospitals/Dr's. My first instinct coming out of the PM implant was, I was hungry, oink, oink.

Let us know how you do on this ~ you should make great progress and feel much better ~

Carolyn G. in TEXAS ~ Butterflies & Song Birds ~

Hello

by Genie - 2010-06-11 03:06:51

Another quick hello from the UK (London). Are you at a good specialist hospital? I haven't had an ablation but know that they can be tricky and you want the best!

Genie

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