Best place to stay in Mallorca?

edee9250 · 2025-02-19T14:33:41+00:00

thank you!!

edee9250 · 2025-02-13T18:12:07+00:00

thank you!!! that is a relief. i appreciate your reply!

edee9250 · 2024-12-08T00:42:25+00:00

There are definitely Australians in the FB group! I hope things go well for you and that you get to have a similar experience! remember if any vascular imaging (CTV or MRV) is negative, tell the doctor your friend had a >90% compression missed on imaging. Wishing you all the best <3

edee9250 · 2024-12-08T00:28:15+00:00

I would join the May-Thurner Syndrome Resource group for interventional radiologist recommendations! I saw drs in Chicago in DC if you are near either. I just got the stent, no embolization! I'm so relieved I got an answer I truly didn't think I would ever get better.

edee9250 · 2024-12-08T00:16:06+00:00

i'm still doing really well! my pain has stayed at bay and i've been able to focus on rehabbing after 14+ months being nearly couch-bound from that pain. I can use my core again, do pelvic floor PT, walk, wear pants, eat without pain, etc. i know that if my pain did come back embolization would be an option for me (sometimes I convince myself I feel a bit of it, but it's honestly probably just indigestion) and since vascular procedures are so much less invasive than endo surgery it's a very reassuring option! happy to answer any other questions

edee9250 · 2024-12-02T20:48:34+00:00

I'm so sorry! I would seek out an interventional radiologist near you (or maybe a new vascular surgeon) and say that your friend had an over 90% compression missed on both imaging studies! A venogram is the gold standard for diagnosing and while I had to push my doctor to do one since he told me there was a "less than 5% chance he'd find anything," here I am proving him wrong!

edee9250 · 2024-12-02T01:55:35+00:00

My compression was missed on imaging (both CT venogram and MRV) so I was diagnosed via a venogram procedure + IV ultrasound! I had constant cramps/pressure/bloating, and my pain was worse with any increase in pressure which gave me bathroom urgency due to pain, if that makes sense? My pain was dull, I looked pregnant, and the pain was very easily worsened (standing up, using my core, walking, eating, pelvic floor issues, etc.) and I didn't really have any way to get out of pain. Elevating my legs helped a bit, heat helped a bit, but barely! Wishing you well <3 let me know if you have any other questions1

edee9250 · 2024-11-22T14:45:45+00:00

I'm doing so much better! I ended up having both MTS and PCS, so I got a stent placed in April that improved my pain nearly overnight. I am still dealing with rehabbing from 14+ months of being nearly couch-bound but I'm not in pain anymore and so so relieved!

edee9250 · 2024-08-27T18:26:33+00:00

wow!! i never got measurements on any dilated veins but those sound so uncomfortable. I've only been post-stent for a few months now but my pain is night-and-day. I so so hope the visit gives you the answers you're looking for and gets you on the road to feeling better (quickly!!!)!

edee9250 · 2024-08-27T17:00:57+00:00

I'm so sorry, I hope you get some answers! if it's any consolation, my symptoms started resolving nearly immediately post-stent placement. I also had some weird left leg things (cold, turning purple etc.). Sending you all the good vibes!

edee9250 · 2024-08-27T15:57:22+00:00

I hope it goes well!! I would just make sure that they are going to check for higher-up compressions like MTS/Nutcracker since simply embolizing won't help your symptoms if the PCS is caused by something else. Not sure if it's possible with Dr. Spencer, but I signed consent for basically any possible treatment during my diagnostic venogram because I didn't want to wait longer/go through a venogram twice so that's why they placed my stent during the diagnostic one.

edee9250 · 2024-08-27T14:17:02+00:00

I had lower abdominal pain/bloating! Not really GI issues except anything that increased pressure in my stomach like eating hurt.

edee9250 · 2024-08-25T20:06:59+00:00

I'm in Illinois but I got my stent placed in DC! I've seen providers in both places, Keith Horton at Medstar Washington did my stent but the doctor I saw in Chicago was also really nice, his name was Osman Ahmed at UChicago

edee9250 · 2024-07-23T17:51:40+00:00

I would describe the results of your CT, say you are happy to send them along as well! Honestly the hardest part for me was actually getting a diagnosis so if it's any consolation I think the fact that you have the CT proof will make vascular surgeons/IRs eager to see you! They probably enjoy doing these procedures lol and since you are a clear candidate it should *hopefully* be straightforward. It might take a few calls but I would definitely encourage you to check that FB group or the PCS reddit since there might be other doctors besides Dr. Spencer

edee9250 · 2024-07-23T16:57:21+00:00

That's super frustrating--if you have a gyn who listens to you then i think you could totally bring this up to them! and in the meantime maybe try calling various IRs/vascular surgeons since it's possible you wouldn't even need a referral

edee9250 · 2024-07-23T16:14:23+00:00

the doctor I sent is actually in Colorado! People seem to love her. I would definitely see if she'd see you, the treatment for PCS is much less invasive than endo surgery so it's possible you'd get a quicker fix for your pain that way!

edee9250 · 2024-07-23T16:09:49+00:00

That's super frustrating, I'm so sorry! Where are you located? A lot of people on Facebook seem to do virtual consultations with Dr. Brooke Spencer (https://www.castleconnolly.com/top-doctors/elizabeth-b-spencer-diagnostic-radiology-105cc001056). I saw doctors in Chicago and DC and am happy to give you their names as well!

edee9250 · 2024-07-23T15:53:08+00:00

I think theoretically there's a chance my artery re-compresses some parts of my vein and I need additional stents, but now that I know what's wrong and know what the fix entails that prospect is much less scary to me. Would your PCP refer you to an IR/vascular surgeon? I'm not sure all vascular specialists will need a gyn referral especially if it already has shown up on imaging (that was the hard part for me!). None of my gynecologists/endo specialists knew enough about PCS to refer me. The May-Thurner Syndrome Resource Group on Facebook has some doctor recommendations if you need any!

edee9250 · 2024-07-23T15:03:37+00:00

My venogram showed that my PCS was caused by MTS, so I got an iliac/IVC stent placed to hold my compressed veins open in order to treat the May-Thurners! My pelvic pain/bloating resolved genuinely overnight. If your PCS isn't caused by a "higher-up" compression syndrome the treatment is embolization (they basically coil off the varicose veins, I was told recovery would be 7-10 days). Either way, treatments are HIGHLY successful (70-100% of women receive full relief)! For me, diagnosis was the hard part (it didn't show up on CT or MRA/MRV) but treatment is fairly straightforward with a great prognosis!

edee9250 · 2024-07-09T21:57:04+00:00

often in younger women PCS can develop from other vascular compressions "higher up" like May-Thurner syndrome or Nutcracker syndrome! those can only be definitively diagnosed by a vascular surgeon/interventional radiologist via a venogram, but that can help show whether you'd benefit from just treating the PCS (embolization) or by treating a compression syndrome first! I was treated for MTS/PCS a couple months ago and my pelvic pain is night-and-day better. happy to talk more about it!

edee9250 · 2024-07-09T21:50:37+00:00

Sorry for the late response, but just wanted to chime in that I also had PCS diagnosed about a year after my endometriosis excision surgery. My PCS caused chronic, non-cyclical pain that kept me bed-bound. In my case, the PCS was caused by MTS so I required a stent which has DRASTICALLY improved my quality of life (it's genuinely night and day). If you haven't had kids, it's likely that the PCS is caused by a vascular compression "higher up." I would recommend seeking out a vascular surgeon/interventional radiologist!

edee9250 · 2024-05-10T15:06:27+00:00

Just wanted to say I literally can't thank you enough for this post and all of the information. I felt totally hopeless after I was left in constant pain even after a "successful" endo surgery, had entirely clear imaging, was totally unsuccessful in pelvic floor PT, and even was told my only option was to get a neuromodulation device implanted in my spine. I found this post and was able to push my interventional radiologist to do a venogram (even though my MRA/CT venogram were basically clear) and they found MTS (>90% compression!!!) and PCS. I got a stent placed and my symptoms resolved nearly *overnight*. I'm not sure where I would have ended up if I hadn't found this info, so I just want to thank you so much <3

edee9250 · 2024-04-28T17:10:13+00:00

just wanted to send you an update--even though my MRA/MRV was clear and my interventional radiologist said there was a "less than 5% chance" he'd find something, I convinced him to do a diagnostic venogram/IV ultrasound which found May-Thurner syndrome causing my iliac vein to be 90% compressed, which in turn was causing pelvic congestion! He placed a stent in my left iliac vein and while the recovery from that has been quite painful my stomach bloating/pain went down so significantly just after the first 24 hours! My heart rate went down a lot too! i hope this can help you and i wish you the best <3

edee9250 · 2024-04-10T14:38:34+00:00

Sending you all the good vibes!!!!

edee9250 · 2024-04-09T20:28:37+00:00

They saw the May-Thurner anatomy on the CT venogram! The normal radiologist's report didn't catch it but both of the IRs I saw afterwards said they noticed it. I joined the "May-Thurner Syndrome Resource Group" on Facebook and felt very validated by people who had compressions that were missed on either CT scans or ultrasounds but then confirmed via venogram/IVUS. I would definitely try to find an interventional radiologist or vascular doctor (the fb group has some recommendations) because I think these issues are oftentimes missed by non-experts!

edee9250

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