Getting ICD surgery. Need Advice PLEASE!

So I am 17 years old and I have Long QT Syndrome which makes me have a prolonged t wave which has to do with the ionic channels in my heart. It causes arrhthymias which could potentially lead to sudden death. We have tried to manage it through my medication (nadolol) but it seems that i am not responding and cannot get to a high enough dose without being totally drained. So i went to my Dr at the Mayo Clinic and i am having to get an ICD put in on the 21 of this month (feb). I was wanting which models you like and more so whether or not i should get it put in submuscularly? I am very self consience about the scar and i really do not want a bulge on my chest. Also i am in school and cant really take any time off so my mom is having to drive me back the day after i have surgery. Also i have to be in a play four days after my surgery. Do you guys think that will be okay?

5 Comments

No, rather not...

by golden_snitch - 2012-02-15 03:02:18

Hi!

Well... having had six pacer surgeries, the first one when I was 18 and still attending school, I would say: No, that will not be ok. You should expect being in some amount of pain for a couple of days after surgeries. A friend of mine who used to have a pacer and now has a CRT/ICD unit said, that she was in much more pain after the ICD was put in than after the pacer; the ICD unit is bigger than a pacer. Especially if you decide to have it implanted submuscularly - that's what I have now -, be prepared that it hurts. Also, since this is your first ICD, the leads will need time to grow in. So, you'll not be allowed to move the arm on the side of the ICD above shoulder level for a couple of weeks. Could also very well be that you get a general anaesthesia for surgery. From my experience it usually takes a couple of days afterwards to bounce back and feel fit again.

If I were you, I'd plan to take at least a week off. Sounds a bit like you're thinking this whole surgery is a walk in the park; I'd say that's better than being too scared. But I always try to be as optimistic as possible and as realistic as necessary. And being back at school four days after ICD surgery to act in a play is, in my opinion, not realistic at all.

Hope this helps a bit.
Best wishes
Inga

Question

by ElectricFrank - 2012-02-15 11:02:45

You said you had to be in a play in 4 days, but gave no idea of what your part is like. I could see your being able to participate as long as you don't need to do anything physically active. There will definitely be a restriction on raising your pacer side arm above shoulder level for 3-6 weeks.This allows the lead to become well attached to your heart and blood vessel walls. You don't want to pull a lead out which would put you back in the hospital.

With the under the skin placement there is a lot less pain. I was out briskly walking 3 miles a day a couple of days after implant, but with it under the skin. Putting it under a muscle involves disturbing deeper tissue and slows the healing process.

How about changing your part in the play to a person being tortured? You could really get into howling in pain. LOL

good luck and be sure to come back and let us know how it went.

frank

Placement options

by shockbox340 - 2012-02-18 12:02:56

As far as which model, let your doctors decide which is best for you. You can't get any better than at Mayo. Talk to your doctor about all the different placement options ahead of time. Your post does not say if you are male or female, but either way you will most likely have some sort of a bump. Some locations are better than others, and submuscular is not the only other option (especially if you are female).

Best of luck! You are absolutely making the right decision to get it!

hi

by w3il3r01 - 2012-02-22 04:02:43

I am 26 with long qt syndrome. I had a icd last year and was in severe pain after the surgery but I hear not everyone hurts like i did. I have super sensative nerves in my chest area so it was defiently no walk in the park. I hope your surgery went well. Oh there is also a very good long qt support group on facebook. If you use fb then I highly recomend it. I think it is called long qt kids and families.

Two weeks post surgery

by Bionic94 - 2012-03-07 02:03:56

Well i just hit the post surgery two week mark! I was in some pain after the surgery, but it wasnt as bad as i thought it would be. I am doing well and since i am a girl my Dr. Chose to just do it under the skin. Since the swelling went down i can definitley see the bulge but its not really that bad. There is one thing that bothers me though, after like a day of school or even sometimes at the beggining, my back gets really achey. And it doesnt feel better until i lie down. I think it might be because my posture has be kinda weird since the surgery, but i dont know.

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