After a long hiatus, I am finally back..with an update!

Hello everyone,

Many of you seem new and may not know of my situation; I hope everyone else who knows of my situation is still out there...I've certainly missed coming to the site here.

To recall, I am now a 37 year old woman and I wear a pacemaker in my left shoulder and last year started to notice that my left arm was swelling and I has having a lot of pain. Some of you had suggested a possible blockage, or that it's called SVC syndrome. In addition, I also have a history of two prior pacemakers attempting to leave my body on their own. Infection was suspected in these cases but could never be confirmed.

For the longest time I never seemed to be able to get some answers related to my symptoms. I am back to say it's official! I have started going to Cleveland Clinic and have finally just had my first venogram. I have SVC syndrome, with a total occlusion of all blood flow from the right and left arms going to my SVC. I also have a total occlusion of the left subclavian vein with my pacemaker wires.

The docs at the clinic still feel I may have a hidden infection somewhere so what they plan to do is very serious. I am looking at the extraction of the device, extraction of three wires despite two venous occlusions, angioplasty with possible stents, prolonged IV antibiotics, and a new device implant through my right chest--they have to put new wires on the outside of my heart by going into my chest.

The docs at Cleveland feel I cannot wait much longer in this situation. My body has also done a remarkable job of making collateral (alternate) circulation around the blockages, but despite that effort my venous pressure is still high, and hence the symptoms. All the major veins in that area around the heart are markedly enlarged. One of them, the hemi-azygous, has been described by the docs as "huge." And WOAH!! is it ever!

The docs say that I really need to do this and, barring any emergency, unless I have a failure with new external wires I am not to get another transvenous implant of any pacemaker wire/device.

Wheewww what a mouthful. I hope everyone is still out there who remembers me. I've missed all of you and I want to say hello to those who I haven't met yet.

4 Comments

My dilemma

by Dodiad71 - 2008-07-04 10:07:16

HI Cathryn! Thank you for your post! I appreciate your response.

Actually, no surgery is scheduled yet and won't be for an indefinite amount of time. Unfortunately, the heart issue isn't the only one I have right now competing for priority. I have another serious problem with my female organ system. At minimum I am expecting the loss of all my parts down south, in addition to a bowel resection. I have very severe endometriosis, but have ovarian masses that don't look typical of endo, but are more concerning to the docs.

The docs at Cleveland would like to see this addressed as well within the next six months so they can go on with their plans. Even though the SVC thing is bad, at least we know what we're dealing with. With the ovarian issue the doc is quite concerned my endo could be turning to cancer.

Frankly, to be honest I am so depressed and terrified by all this that I can't even begin to think about any surgery let alone schedule any surgery. I have been diagnosed with PTSD because of my extensive medical history already. I feel like I just can't move forward any longer.

Thank you again for writing, and for your thoughts. As it is, with Cleveland, I am not only facing such drastic treatment...I also don't have social support and would be at the hospital by myself with no friends or family to accompany me. Having such serious treatment so far from home (Illinois) doesn't sit well either.

Decisions!

by ElectricFrank - 2008-07-05 02:07:31

I can understand your concern about facing major surgery alone. It is scary being in the position of letting the docs make all the decisions at time when you are unable to. I have the same situation since my wife died a year and a half ago. So far I haven't had anything come up, but I sure don't look forward to it.
I guess the only thing I can say is that it is important that you get out of being paralyzed by the whole situation. It not only affects your chances of getting through it, but being in control always makes things seem better. Like my old flying instructor drilled into me..no matter how bad things are a planned crash is always better than one that is just left to happen on its ownl

I wish I could offer more,

frank

see your private messages

by bambi - 2008-07-05 10:07:52

I've had the surgery you are facing. So not to bore other members with another account, I'll write you a message. I just went through a procedure to open my left subclavian vein, and the exact surgery of SVC occlusion you describe.
Bambi

svc syndrome

by luckyloo - 2008-07-06 06:07:30

hi there!

i remember you! i think about you so often. i am very happy you made it to cleveland. they are the best there. ooooo....i am so mad at your other dr.'s!

if i lived in ohio i would be there for you! i know how scarey it can be facing these types of things alone. they have wonderful ministers at the clinic that can be with you before and after surgery. can you check what other options you might have through their patient advocacy dept? i know they won't be friends or family but at least there will be someone there with you. who knows...you may find a new friend!

bambi has been through what you need to go through. she is very wise :o) listen to her!

i have some mysterious blood pooling in my left jugular vein. my cleveland dr.'s are stumped. i don't have arm or facial swelling but feel like i'm standing on my head all the time. pressure in my neck and face....worse when i lay down. svc syndrome has been ruled out but they say i have symptoms of it. i would love to track your progress. there is one dr. at cleveland i didn't like....a vascular specialist that my cardiologist, who i love, sent me to. i'm guessing he didn't know much about him, just wanted me to get an opinion from him. he yawned through the whole interview process and rushed my appt. i was so upset, i interrupted him and said "if you're too tired to listen to me then please put me with another dr. i traveled 5 hours to see you and i need your full attention" i told him how concerned i am about this! if you've seen a vascular dr. at cleveland and liked him, can you tell me his/her name? this guy seemed so uninterested in helping me.

please keep us all posted on your progress. i don't always check this sight though. you are in my prayers always!

luckyloo

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