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


check out SVC syndrome

by bambi - 2007-04-05 11:04:09

Hi Lou,
After reading your post, I just had to respond. Boy, if your symptoms don't sound exactly like mine were for the last 6 years, I wouldn't be so eager to respond! I posted as a new member about 3-4 weeks ago telling everyone my story and complications I had with my pacemakers. It would be good if you looked that up so I don't have to go into it all again. The title was "Hi again" posted by Bambi. Anyway, if you don't do anything else, ask and be persistent, about your Dr. ordering a test called a venogram. This test is basically one where they inject a contrast dye into your veins. It will show any blockages you may have.You seem to have all the symptoms of a blocked superior vena cava, or other major vein. This is a rare complication of placing pacemaker leads, however it is becoming more common, as more people are being implanted with ICDs. I had symptoms of SVC syndrome 2 weeks after the 1st pacer was implanted, which brought me to the ER. Everyone scratched their heads, shrugged, and sent me home. This continued for 5 more years, and got steadily worse even after a 2nd pacemaker was placed because my battery was gone. At every single appointment with my EP, I complained of all the symptoms you have described, and I was given a blank stare, and a shrugging of shoulders. I got to thinking I was either the world's biggest hypochondriac, or I was nuts!! I don't know why the Dr.s seem so clueless to this complication. It is well described in medical journals anyone can "GOOGLE"! Treating this can be serious, but it CAN be treatable. See my earlier post.It was not until I saw a thoracic surgeon, who ordered the venogram, did they discover I had a 95% blockage in my SVC. I hope this helps you and raises an awareness to others of this potential complication. If you have any questions or want to send a private message, please feel free to! Good luck! Bambi

Thank you!

by Lou - 2007-05-22 02:05:59

I just composed a private message to you, Bambi, but could not get it to you. I used "Bambi" as my address but the screen indicated it was an invalid one. I so appreciated your timely and helpful response to my first 4/4/07 posting as a new member and apologize for the delay in responding to your comments. I had a bilateral venogram which disclosed clots in both subclavians and my innominant vein but a "clean" cava. These three clots have resolved themselves after use of a thrombic agent. Unfortunately, however, the problems described in my original posting continue. I am headed for the Cleveland Clinic next month and hope "they" will be able to make sense of my rather large constellation of symptoms. Again, many warm thanks for your wisdom and caring. Hope life is treating you well ... Lou

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