New Member Needs Help


I had a dual-chamber Medtronics pacemaker implanted in November '06 after a symptomatic ER admission to a major Heartland hospital and a subsequent diagnosis of sick sinus syndrome. This "Adapta" pacemaker was reimplanted in the other side of my chest later that month following the onset of unusual, new symptoms which arose at home one week after the initial surgery. These symptoms included significant left jugular vein distension; frequent belching and hiccuping especially when the distended left jugular vein and/or lower neck area were touched; chest fullness, tightening, periodic thumping and pain; pulsations and tightening of the neck with choking sensation; bilateral closing of the ears and Eustacian tubes; jaw pain left and jaw numbness right; significant dyspnea; sporadic hypotension; general weakness; transient headaches; and some lightheadedness, vertigo and near syncope with torso/upper arm exertion.

I have no concomitant heart problems. In the beginning, all of the above symptoms were episodic; at present, most have become chronic. They now arrive with or without any kind of exertion and there remains an on-and-off again redness and tenderness at the pacemaker implantation sites which from the start felt and feel like a subcutaneous sunburn; my right lung was punctured during the reimplantation and the resulting pneumothorax chest tube site also remains tender. In addition, I have recently developed troublesome pressure in my head which accompanies the onset of these symptoms each day as well as disturbing gastrointestinal problems. And, I have gone from being a healthy, active and engaged individual to one whose daily goal is simply getting through the day. All of the symptoms I have described are not present at night when I am lying down but return in the morning when I rise; they are maddening.

Can anyone tell me if, following a heart pacemaker implant or reimplantation, you have experienced such a wide range of challenges simultaneously? Doctors tell me they have never seen this rather large constellation of symptoms, that I do not have pacemaker syndrome because my fractional % is good and that my pacemaker is working properly. Some attribute my challenges these past 5 months to venous congestion and backflow from my smaller sized veins - three of which (Both subclavians and innominant.) clotted and narrowed post-op, and they insist time and Coumadin will improve my situation; others simply don't seem to know what has and is happening. However, in the past 8 weeks all of my symptoms have worsened. The pain and daily discomfort are extremely stressful and I am very discouraged. Could perhaps undetected electro-magnetic interference in or close to my house also be contributing to my challenges? There is, for example, cell phone relay station apparatus atop a nearby building. There are so many variables to eliminate one by one and I would appreciate hearing from anyone who can help me sort through any of this. Many warm thanks for your patience with this very long message ... Lou


4 Comments

WOW!!!

by swilson10 - 2007-04-05 10:04:47

Lou,
You have certainly been through one heck of a time with this device!! I have not experienced all the symptoms you have reported, but can identify with many. My PM was implanted initially in April '05, I have had two subsequent procedures since then and will be having another one soon due to another displaced lead. I can't speak specifically to the possible electro-magnetic interference, but I can say that there are others on this site who have experience in this area and may be able to offer better insight. Also, have you contacted the PM manufacturer? That can also be a good resource. Finally, have you gotten multiple opinions from medical professionals? I am guessing anyone who positioned the PM improperly or punctured your lung may not be as willing to discuss error as other professionals outside of that group or hospital would be. I hope that you will get some answers and more importantly some relief in the near future. You will be in my prayers.

More Wow

by ridera - 2007-04-05 11:04:45

Wow!

You need real professional help in a hurry.

I'd suggest contacting the PM's mfgr support folks ASAP [there is an 800 number on this website]

And, find a new team of cardio's and EPs ASAP. [Cleveland Heart Clinic, a teaching hospital near you, etc.]

It is HIGHLY unlikely any of the symptoms you describe are related to any electro-magnetic interference.

Good luck

Vagus nerve?

by valbob89 - 2007-04-22 04:04:38

Lou:

Hope you've gotten answers by now (I'm more than two weeks behind your posting). The vagus nerve runs down the neck and controls lots of things; if it gets triggered or irritated, it can cause many different kinds of symptoms -- some like yours.

The vagus could be irritated or triggered by a lead that's placed in just the wrong spot in your heart (luck of the draw). It also could have been irritated by surgery, nicked or compressed, who knows? Symptoms might fade on their own if it's the vagus, or could continue until the cause of irritation is remedied.

Ask your cardiologist about the vagus and other nerves. If she can't help you, ask her if a referral to a neurologist might be appropriate.

This is just one possibility that I haven't seen anyone else answer you about. I could be completely wrong; I'm no doctor. But having several possibilities written down next time you visit or call might help discover the answer -- even if it's none of the above.

We're pulling for you.

Bob

Thank you!

by Lou - 2007-05-22 01:05:38

Just a line - very tardy but oh so sincerely sent, to say many warm thanks for your timely and encouraging responses. Unfortunately, my health challenges described above continue and I am headed for the Cleveland Clinic next month. Let's hope "they" can sort out my large constellation of symptoms and help. Again, my deepest thanks to you all for your wisdom and caring ... Lou

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Member Quotes

I am just thankful that I am alive and that even though I have this pacemaker it is not the end of the world.