1. < Heart & Blood Health

Anyone experienced Iliofemoral Deep Vein Thrombosis (DVT)?

Posted by penelope321 @penelope321, Nov 19, 2023

Has anyone ever experienced an iliofemoral DVT? I've been diagnosed with either a DVT in the left peroneal vein or a superficial thrombosis upper to mid calf in my greater saphenous vein depending on which radiologist I believe is correct. I have been experiencing fairly intense pain in my lower left abdominal/pelvic region and the left side of my vulva is enlarged and purple. The most troubling of all though is the fact that my left leg is a different color than my right. None of the doctor's that I have seen think anything is wrong! Can anyone offer any thoughts or next steps to pursue?

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penelope321 | @penelope321 | Dec 2, 2023
In reply to @covidstinks2023 "I would go to a specialist. Perhaps a gastroenterologist? If you are connnected to "MyChart" or..." + (show)
@covidstinks2023

I would go to a specialist. Perhaps a gastroenterologist? If you are connnected to "MyChart" or other online medical website connected with your doctor, the specialist will be able to pull up your scans and look at them. I wish you the best and praying for you. It's a different day in that we have to be our on advocate a lot of times.

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I've been to my GI doctor and he told me to go back to my PCP. 🙁

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1 reply
Debbie | @dbeshears1 | Dec 2, 2023
In reply to @penelope321 "How do I get a 2nd opinion on a CT scan?I had a CT of abdomen..." + (show)
@penelope321

<p>How do I get a 2nd opinion on a CT scan?</p><p>I had a CT of abdomen and pelvis done 10 days ago. I just got the report yesterday. (My PCP never did call me about the results.) Anyways, I know that several important things were missed because they were not noted in the report. How do I go about getting a second read of the scans-hopefully by someone that is better versed in the reading of the CTs?</p>

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I would go to the person who ordered it and/or your PCP. I had a CT in a hospital once, and my husband and I were told I didn’t have a stroke (it was an anesthesia reaction I had, but they were doing proper protocol and checking for stroke). I didn’t see the report itself as patient portals were in infancy. I was moving out of state so 8 months later I was collecting paper hospital records from them to take with me and I finally saw the written report that was never even sent to my PCP. It said I didn’t have a stroke but there was an incidental finding of an abnormal growth in my neck that needed correlation with an ultrasound and biopsy. So I took the report to my PCP as I was leaving town and she helped set up tests in SC and then NC as I started my cancer discovery and treatment journey 8 months after the test. That was a communication error but with portals now and real time reports to patients, it helps us ask about the things we read and partner with our providers as things might unfortunately be overlooked and mistakes can be made. We can help them give us the best care.
New state, new GI, new routine EGD. Report was fine, but failed to mention a small hiatal hernia I’d had for 8 years. So I asked him directly if it was no longer there, so he relooked and edited his report to include it. In his defense, it was small, but I guess we realize the benefit of them having the prior reports to compare to.
I wouldn’t hesitate to get a second opinion on anything you think is important.

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mikaylar | @mikaylar | Dec 3, 2023
In reply to @penelope321 "I've been to my GI doctor and he told me to go back to my PCP...." + (show)
@penelope321

I've been to my GI doctor and he told me to go back to my PCP. 🙁

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Maybe call a coach at your insurance company and ask.

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1 reply
penelope321 | @penelope321 | Dec 3, 2023
In reply to @mikaylar "Maybe call a coach at your insurance company and ask." + (show)
@mikaylar

Maybe call a coach at your insurance company and ask.

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Unfortunately my insurance is horrible and pretty much useless! I went through one of their co-companies to get the CT scan done and then that company's radiologists do the reading. I think it's a sham. This was the reason for asking how to go about getting a second reading but from a radiologist who is knowledgeable about how to look for the things that are out of the ordinary not just the usual things.

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1 reply
mikaylar | @mikaylar | Dec 3, 2023
In reply to @penelope321 "Unfortunately my insurance is horrible and pretty much useless! I went through one of their co-companies..." + (show)
@penelope321

Unfortunately my insurance is horrible and pretty much useless! I went through one of their co-companies to get the CT scan done and then that company's radiologists do the reading. I think it's a sham. This was the reason for asking how to go about getting a second reading but from a radiologist who is knowledgeable about how to look for the things that are out of the ordinary not just the usual things.

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What is going on in the medical field is horendous. My neurologist ordered an MRI and included in his instructions to the radiologist and/or I guess the person who would read the MRI, "Don't mess this up!" WTH? You would think they were car salesmen.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 7, 2023

@penelope321, if you would like to inquire about a second opinion from Mayo Clinic experts, you can submit a request. Get started here: http://mayocl.in/1mtmR63

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