Avm pelvic, 31 years, tons of surgeries

Where to begin: I am 56 now and I became symptomatic at age 22. It took 3 years to diagnose this. Started with gastritis, then colonoscopy, endoscopy, then my favorite, Barium Enama. This showed a large constriction on my intestine. The radiologist said he was fairly certain I had a large mass around my intestine and most likely an aggressive cancer. Enter biopsy but instead of tissue, they drew blood. Enter Princeton Medical Center (one of the best at the time). Next, angiography. Enter head of vascular surgery, Dr. Kahn. He showed me an X-ray or these torturous vessels in Pelvis with feeders from inferior mesenteric and left hypogastric - internal Iliac. I will never forget he said it was the “size of a softball and shaped like a twinkie” (a bit funny). I asked him the next steps and he said he wouldn’t touch it with a 10 foot pole. At that time (1990) he said the three doctors handling this are located in NY, TX, and LA. Since I was in NJ I went to NYU Medical Center. Enter Dr. ROBERT ROSEN (My Superman). I took my X-rays on the train and went to the appointment. These were old school x-rays in large Manila folders. My appointment consisted of him being in between surgeries and wearing scrubs. I gave him my X-rays and we went to the room where he puts them up on board with whit light. First understand that this AVM up until this point was a mystery to all doctors I talked to and I was hopeless. So SUPERMAN says, yes, Pelvic AVM, LARGE, FEEDERS FROM INERIOR MESENTERIC AND HYPOGASTRIC (it was amazing as he had to be about 40 at that time and by this point all the med books called it the Iliac (internal/external). He said, ok, surgery, General, go in with catheter through right femoral, thread it up to one of the arteries, inject an embolytic agent, cut off arterial flow, reduce venous mass, ease up pain in intestine. He said multiple procedures, but he believed I would be ok. I almost kissed him right there. Going from stomach cancer and certain death to fixing it! I was skeptical but from 1990 - 2008, I’ve had so many procedures it was well over ten! He was conservative, a pro, the best in his field (and only around 40 at the time). In 2008 I told him I was now over 40 and asked him to take some more risk as I was older, and couldn’t deal with pain or…enter new problem, opiates and benodiazapenes! Since 2008 I have been almost asymptomatic but enter new issue, DVT on same side as AVM. He indicated the AVM surgeries have nothing to do with DVTs. This is the only time I ever disagreed with him however, he is Superman and saved my life! This was around 2015, now at Lenox Hill.
In summary, I have a 25 year old daughter and 2 grandchildren and I can’t think of what would have happened without Superman entering my life? No daughter, no grandkids, no Tom (me). I’ve said this before but Dr. Rosen is the best in the world at this. Thirty three years dealing with this and once again, “Thanks Superman”
Bottom line AVM surgeries with interventional radiologists has come a long way since 1990 and, there’s hope. Every day is a gift for me and a thanks to Dr. ROBERT ROSEN. THIS INCLUDES ALL HIS SUPPORT STAFF.
As important, his bedside manners made me not feel like a feak!
Any help folks need or any questions, let me know as I’ve read about this topic for hundreds and hundreds of hours. There is hope and where there is hope, there is life and happiness!
Sorry as I did not spellcheck.
Tom

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I like you.

I really really like you.

Thus sayeth the “other” Tom

Hi!

Thank you for posting and wow, what a journey! I am glad that you are now OK.

I am Nathalie, 48, pelvic AVM diagnosed in 2019. Pain since my 20s but diagnosed as PMS. Symptoms were masked by taking the pill after that (avm is around reproductive organs, bladder, urethra, etc). Things have gone worse since my double whammy: having my second miracle child in 2007 and deciding not to take any hormonal contraception. My enlarged heart was diagnosed in 2015-2016 but they did not know why and as I was stable…

Sorry to say not much has changed since 1990 in terms of Drs’ attitude, at least here in UK. The urologist that delivered the diagnosis was all “a group of us were looking at it yesterday, some with over 25 years radiology experience, never seen anything like it”, “look at those pictures (pointing at something which I thought was my intestine but no such luck, then calling the nurse to have a look)” great bedside manner! A lot of things he said were actually not correct but, admittedly, it was not his field of expertise. Still, I could have done without the “wrap yourself in cotton wool because if that thing ruptures there’s nobody saving you” part.

Anyway, fast forward multiple doctors (cardiologist, geneticist, gynaecologist, vascular surgeon, interventional radiologist) and exams, I have been waiting for my first embolisation since beginning of 2021(thanks COVID) from Dr Mcafferty in Birmingham. I hope he will be my superman. Vascular surgeon wouldn’t touch it. I am pretty concerned about non target embolisation and regrowth but I am deteriorating so I don’t have much choice.

Any words of wisdom?

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I am a newby so I can only send prayers or best wishes. I am in the San Francisco Bay Area at Kaiser and our vascular specialist said my pelvic AVM is too big to operate on. He also said don’t fall off of a cliff or get in a bad car accident. I am thankfully symptom free except for sciatic pain which is more likely due to bursitis of the bursa and piriformis syndrome. It’s good to hear from others with the pelvic AVM’s.

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I forgot to say I’m 67 and in good health otherwise.

Dr. Rosen was my “superman” too. I can’t imagine what my life would have been like without him. I went through 13 years of pain. I live in Texas and I went to the “best” that Texas had to offer. They just made it worse and told me I was crazy. Then, I went to St. Louis to see “the best”… they misdiagnosed me with lymphoma and after 2 surgeries confirmed what I had thought… an AVM. I finally went to Dr. Rosen and he saved my life.

Thanks for sharing your story.
Catherine

Go see Dr. Rosen! :slight_smile:

Thank you. I will check into him!

To be sure, I believe the doc you’re looking for is Dr Robert J Rosen at Northwell Health / Lenox Hill hospital, Upper East Side, Manhattan. There seem to be quite a few Dr Robert Rosens across the world.