Finally an answer?

Hello everyone. Wanted to update....wow. Thank you all for your support!

This last Tuesday I had a CT with contrast (ordered by my internist only after I've been to hell and back trying to get an answer) to look at my chest to see if there was a connection to the swelling and pain in my left arm. The result was colorful.

I apparently have obstruction in progress of my Superior Vena Cava (SVC). What kind of obstruction is yet to be determined (could be a clot?) so I go back to the pacer doc this week. Where this goes I have no idea. I am totally dependent so the wires will need to be in there. I also was told by my pacer doc's colleague recently that extraction of my machine and wires would be life-threatening for me. What they would do for me now is mind boggling. Where do we go from here?

The pain continues to be bad and an area of skin where the pain occurred is now numb. I think it's clear now that nerve damage is also in progress.

Anyhow, another incidental finding came up in that CT. I also have a couple of growths deep within my thyroid. So now I am off to further testing for that too. Yikes.

I hope after all this they (the docs) might start taking me seriously now!

Thanks again,
Dodi

5 Comments

It's about time!

by Stepford_Wife - 2007-08-06 01:08:56

Thank goodness you didn't give up. It looks like you are finally going to get an answer.
One should never accept a doctor's diagnosis as the final answer. It pays to be persistent, as you have demonstrated.
The best of luck to you, I hope all your troubles will result in a happy ending.
Take care,

~ Dominique ~

Well done!

by auntiesamm - 2007-08-06 03:08:31

Hi Dodi - Cathryn and Dominique said it very well. You are a great example to all of us of perserverance! It has to be a relief for them to have found something after all this time. Imagine if you had not continued to pursue it? I hope when the time is right you will notify all those other physicians & healthcare professionals who could not find anything wrong and let them know what they missed! No doubt some of them were telling themselves it was "all in your head". How they love to do that when they don't have an answer. Thank you for showing all of us how to advocate for oneself. Good luck as you continue this journey and God bless and keep you.
Sharon

Hi Dodi,

by Gellia2 - 2007-08-06 06:08:51

I'm so glad you persisted in getting a diagnosis. Don't give up heart. SVC can resolve itself like any other blood clot. Sometimes they have to stent the vessel. I was lucky. Mine resolved itself.
I'm glad you have something to go on and wish you well with your thyoid problems, too.
Best to you,
Gellia

Good foryou!

by bambi - 2007-08-06 08:08:39

Hi Dodi,
I can't remember if I responded to you in an earlier post. Anyway, I have been through everything you have, to the point that it 's almost the same story! A CT scan with contrast did not show my SVC blockage, but funny enough, it did show 2 growths on my thyroid! My Dr. seemed to think these were benign and didn't order further testing. Which I guess is a little scary! A venogram did show a 95% blockage of my SVC however. Some people's do resolve on their own like Gellia said, and some people, over time, develop collateral veins that naturally drain the blood flow that the SVC is not doing. I, unfortunately did neither of these things.So, after many months of seeing thoracic surgeons, and 3 attempts at ballooning the SVC, my EP and a thoracic surgeon extracted both my leads, [1st surgery], ballooned the SVC again and placed a stent to keep it open, [2nd surgery], and finally replaced both leads and hooked me up again, [3rd surgery]. Both the 1st and 3 rd surgeries were done under general anesthesia, and I was awake for the 2nd. These procedures can be life threatening, and you have to meet certain criteria for them to attempt these procedures! I was warned that things could go bad. There is just not enough of these procedures done anywhere in the world, and my Dr. also warned me that there are just not enough statistics to go by to state that they are even successful! I have been much better
for the last 12 months, however I have developed another blockage that is causing my left arm to swell! So- go figure! At the moment, I feel like I can handle this arm swelling because it's not as bad as the neck, face ,and eye engorgement I had last year! As one honest and blunt radiologist said to me after the 2nd attempt at the ballooning of my SVC, "these complications are a dilema and a mess! It's a bit of a crap shoot as to how to treat them!" If you want to "talk" more about your next steps, you can private message me anytime! I'm so glad you finally got a diagnosis!
Bambi

hi Dodi,

by bini - 2007-08-07 11:08:33

it is so good to hear that you finally have an answer due to your persistance. I fully believe that sometimes a person knows their health better then a doctor does!
I am sorry to hear that the prognosis is a little scary. Just know that we are all hear for you and are thinking about you during this tough time!

Christine

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