Following my 2nd ablation I experienced prolonged QT's . The following day my doctor gave me an hour to decide if I should have an ICD implanted. To back up a bit. 1987 I suffered V-Fib, thank God it happened in a hospital. I had just given birth to my 5th and was only 25. No reoccurrence till Jan. 08. I suffered bilateral PE's, and then all heck broke lose with my heart. SVT's, Atrial Tach, you name the rhythm I had it. I had just lost a friend at 52 years of age to ventricular fibrillation. With all my grown kids present and a nervous husband we said yes to the ICD. Looking at it like like insurance, you need it and hope never to use it. I am in blood thinners for Factor 5 a blood disorder. I developed a hemotoma, infection and I am still unabled to move my left arm, well I can move it but the pain is terrible. This was my 23rd surgery and I had a C-section w/o drugs, so I understand pain. I moved my arm around afterwards but now the site hurts/burns and sticks out over an inch, the scar is right where my bra strap conveniently rubs against. My arm pit as well as shoulder kills when I raise my left arm so it's level w/ my shoulder, fist level with my head, I can't move it backwards. Anyone else having these problems?? I'm 47 and I have always been able to multi-task and I run my own business. Is this normal?? My doctor isn't the most compassionate one around, however, he's supposed to be the best.
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12 weeks since surgery ICD terrific pain in left arm
- By Imcre8ive
- Posted January 19, 2009 at 8:04 pm · 24 replies
- In Living with an ICD
- Shared with the public
Explore topics in this discussion:
Surgery Gabapentin Weakness Pain Falls Pacemaker Physical therapy
24 replies
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- By Bus
- Posted January 20, 2009 at 9:10 am
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Hi Imcre8live,
It's too bad your having so much pain with your ICD/ arm movements. ICD site hurts/burns and sticks out over an inch. I have had my ICD 32 months and have full arm movement with ease. My ICD has stopped lethal v tacs. 6 times now. It sticks out only 1/4 of an inch and I am thankful to have it. I hold it when I roll over on my left side to sleep. (I no longer sleep on my stomach for fear of blood pooling at the ICD and getting through the seal.) I am lucky and didn't have infection, don't wear bra (I am a 70 yr old Man) and no longer try to multi-task. ( I am happy just to task.) I am not a doctor but suspect INFECTION since your problems are not normal as far as I know.
Best of luck, Bus Awakening Heart
- By Johnie
- Posted January 20, 2009 at 9:22 am
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This does not, in any way, sound "normal" to me. Please get a second opinion from another doctor.
- By Imcre8ive
- Posted January 20, 2009 at 9:31 am
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Thanks, After my initial infection that was very obvious cleared up and the swelling went down from the hematoma I have been quite shocked at the size of the implant. I call it my life line, however, with the constant burning and the severe pain in my shoulder area and literally a 3rd boob, it just doesn't feel right. It's now my 10th week since my surgery. My rehab doctor (she handled my knee as well as elbow rehab) was shocked when she saw the size of it. She thinks it is laying on my axillary nerve. I go in for an ultra sound tomorrow, hopefully it will answer some of my questions.
- By Imcre8ive
- Posted January 20, 2009 at 9:35 am
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Thanks, I will make some calls today. The nurse at my Cardiologists office says to give it a little more time. I will know more after my ultra sound tomorrow.
- By mery
- Posted January 20, 2009 at 2:38 pm
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Doesn't sound right to me. I think 12 weeks is plenty of time to give something that's affecting your life so negatively. I believe I would definately consider seeing another doc. I've had my ICD for 5 years, and have full range of movement of my arm, and the "bump" made by my device is probably not even a quarter of an inch in height. My incision also falls mostly under my bra strap, but healed well and now causes little or no problem. It did chafe at first, and you can get wider strap covers in a bra store. I think they are actually made for people whom have had breast removal, my aunt has some and they help with her bras and "falsies" (as she calls them) fit easier. I got my strap from her and it helped a LOT.
Good luck. Seriously think about seeing another doc.
- By ttinmass
- Posted January 30, 2009 at 11:44 pm
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you need to get that double checked
my device even after surgy never caused me pain.
Please best of luck I hope the best for you..
Please post soon so I know your doing ok
- By lisa_chic
- Posted February 26, 2009 at 9:27 pm
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I had my surgery Sept 3, 2009 for my ICD/defib. My left arm was in pain the day I went home. Everytime I saw a doctor I complained about the pain. It got worse. At my ICD check up they said I needed to go to physio that it was probably frozen shoulder. So I did that, it just made it hurt more. My general doctor finally prescribed gabapentin, which helped out a bit. He send me to a neurologist, cause we were wondering if the ICD is laying on a nerve or something. The neurologist sent me for a CT Scan of my neck, and I have an ultrasound for my arm next week. So.....I hope to get answers. It just isn't right to be in pain so long and it's been almost 6 months for me.
Please post again so we know if you found out what was wrong.
- By jeffreylinda
- Posted February 27, 2009 at 9:41 am
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My ICD was very painful in the beginning. It was placed 3-25-07. In the last 6 months, the pain has gotten better. Some days are worse than others. I'm a 38 yr. old female and one of my doctors said that hormones play a role in the pain. Another doctor said that once the scar tissue is in place, the pain will get better. Sometimes I think they don't know what to say because the doctors have never been through it. I hope your pain will get better as mine did
linda d.
- By Imcre8ive
- Posted February 27, 2009 at 11:37 am
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I have been going in for physical therapy twice a week. They say I don't have frozen shoulder, it was caught in time. I had to call my family doctor to get the referral, my cardio doc just told me to stand next to a wall and walk my fingers up the wall. My icd still feels like acid burning on my skin. I wake up through out the night will tremendous pain in my left arm. I can raise both arms straight up and forward, however putting my arm behind my back or bending it and moving it backwards is impossible. The icd nurse said that since my unit is working fine that this is just something I have to live with.
I am still checking out my options. If anyone has any more feedback I'd love to hear from you.
- By Reneemj
- Posted March 25, 2009 at 1:46 pm
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Hi all,
I've been having the same issues with arm pain, pain in the ICD site, the ICD hitting my clavicle. My new doctor is going to move it from Subcutaneous to Sub pectoral. He thinks that it is up to high and sitting on a nerve.
Has anyone else had any luck with getting their problems resolved?
Thanks
Renee
- By Imcre8ive
- Posted March 25, 2009 at 2:28 pm
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Have you done any rehab?? I have regained some motion in my left arm, however, it "zings" me often and touching it, even with my clothing hurts. I have weakness in my left arm and much difficulty sleeping. does this sound familiar to you? Also, does it just plain hurt you all the time @ the incision site and the devise itself?
Hope to hear from you
Hang in there
Jackie
- By Reneemj
- Posted March 25, 2009 at 7:34 pm
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Hi Jackie,
I'm glad to hear that you have had some improvement. I'm currently in Cardiac Rehab and I'm in Physical Therapy. I'm getting some of the motion back but yes to all of the above questions.. it all sounds very familiar. This is my third ICD and the only one that has been problematic so I guess I should look at that as a blessing.. :)
How are you doing?
Take Care
Renee
- By Johnie
- Posted March 26, 2009 at 10:23 am
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Renee --
You're on your third ICD? I got mine two years ago, and I've always wondered about whether it would need to be replaced some day. I know it has to have the battery changed, and I've had the leads replaced once -- but do you also have to have the device changed periodically? Can you share your story?
Johnie
- By oleblueize
- Posted March 26, 2009 at 4:00 pm
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I had my ICD implanted 7 weeks ago and now have no problems with left arm movement. I did have pain in my armpit and was told it was healing- the device is stitched to my muscle. Some days I get more discomfort with my bra than other days. I was able to get a cover for the seatbelt that is made for ICD and chemo ports. It is not too bad when it stays in place.
I was never told not to sleep on my stomach. Had anyone else been told not to?
Cathy
- By Reneemj
- Posted March 28, 2009 at 12:47 am
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Hey all..
Johnie to answer your question - you'll probably need your device changed out due to low battery every 5 years or so. It's an normally an outpatient procedure and shouldn't be a big deal at all. You don't get into the big deal stuff until you need a lead extracted or replaced (which I have had neither done yet) . I've had my ICD since 1997 that's when I had my first SCA and thankfully had someone home to save me. I've had two shocks and those were back in May and at that time since my battery was low they decided to change out my device and add a new atrial lead (which I never had before) so now I have a dual chamber ICD.. which means it watches my up and lower chambers now instead of just my lower. I have a lot of discomfort and pain since this last implant though that's why they're planning on moving it subpectoral (new doctors plan).
Cathy- I have never been told not to sleep on my stomach in fact that's normally how I sleep but with a small pillow under my ICD for comfort.
Please let me know if you have any other questions..
Blessings to everyone on here...
Renee
- By Imcre8ive
- Posted March 28, 2009 at 9:54 am
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My doctor wants to move my icd subpectoral, they do believe it's on a nerve. Has anyone actually had that done? My insurance company is bulking they haven't paid for the implant of my current ICD. I'm worried the longer I wait perhaps the more damage it's causing to my nerve.
Does anyone have any input. Currently my ICD sticks out over 1/2 inch on one side and a full inch on the other end. You can feel the wires too, it looks terrible.
- By Reneemj
- Posted March 29, 2009 at 1:25 am
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I'm interested in the same :) Jackie-I'm having the same problems and am going to do the reposition in June. I lived way to many years pain free with an ICD and know this is not right.
Message me if you want more info I know how frustrating and scary all of this can be.
Renee
- By Imcre8ive
- Posted March 29, 2009 at 9:17 am
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I am looking into having this done sometime after may. I am a photographer and I carry my camera in my left arm. Even with daily exercises my arm doesn't work right. Can you feel the wires from your icd?
My personal email is Imcre8ive@mac.com. Let's keep in touch
- By oleblueize
- Posted March 29, 2009 at 11:43 pm
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Renee
Thanks for the info. Is your defive a bi ventricular device( defrib and pacemaker)? That is what I ended up with.
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