12 weeks since surgery ICD terrific pain in left arm

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.

By Imcre8ive
Posted October 21, 2009 at 2:44 pm
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Well it's been almost a year. The pain is worse then ever, traveling up into my neck, shoulder and on my ribcage on the left side. Have been waiting for OK from insurance company since JULY to have it moved. Has anyone had theirs moved and the horrific finally stopped? It's 24/7. I am ready to cut it our myself. It sticks out about 1/2 to 3.4 inches and is moving towards my armpit. Yikes!!

By Imcre8ive
Posted April 24, 2009 at 4:01 pm
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I am on blood thinners due to a factor 5 blood disorder. I have had a total hyst. at the age of 25. As far as my 3rd book (icd) Nothing can touch or rub against it without terrible pain. My arm is much better. I used a cane, laid on my back had my palms pointed toward my face and gripped the cane letting my arms fully extended go towards the carpet. I ended up putting wrap around weights on it and did a few more exercises with it and I have full range, just about. They want to move it and put it under my peck muscle but that can bring on more clots or they can take it out and increase my medicines. I'm leaving for vacation for a week. I'm still trying to wrap my head around all this stuff.
Let me know what your doc says.
hang in there.

By S_Cavendish
Posted April 24, 2009 at 3:35 pm
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Hello, I just joined after reading through your postings.. I had my ICD put in back in Oct. so I just made 6 mos. I have had pain in my left arm as well. The weird thing is that after the surgery my arms were very slender and never puffy, 3 mo.s later I started getting very swollen and I could tell that I had poor circulation, my fingers would almost be blue sometimes.. I had to have all the tests done to confirm that I didn't have an infection or a clot.. the dr.s actually never figured out the reason for swelling so far after the surgery. I decided that it was the birth control that I had begun taking again and after 3 days of quiting it my arm went down dramatically. After that, and tons of medical bills I have gone in to see the Docs less frequently. HOWEVER, just this last week (began about 6 days ago) I have had a horrible pain in the muscles around my device. ( I have the device under the muscles -- and btw it still looks awful..) I had been sick so I just thought maybe the pain was from that, it just hasnt improved much over the last few days. It is hard to move the arm and sounds pretty similar to what you have described (Jackie) I think hormones definitely do play a large role, also do believe that the PT I received helped (although i have since stopped going) and I am just a bit confused as to why this happens after 6 months (or for you after 3) It feels similar to how the pain in my arm was directly after surgery. My arm has never looked back to normal since the 3 month mark when I started to BC. I will probably be going to see the dr. sometime in the next few days if it doesnt get better. .
Hope you are doing well

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 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 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 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 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 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 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 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 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 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 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 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 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 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.

Welcome to Inspire!

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