Today I went back to the hospital for my 6 month CT scan follow up to check the status of my pelvic AVM and aneurysm. As of six months ago, the post procedure CT scans indicated that the AVM was sealed off and the aneurysm was thrombosed. The plan was that my body should re-absorb the aneurysm. Well, it didn’t. The doctor just called today. The good news is that the AVM is still showing no signs of flow. The aneurysm has a clot in it which has become like jelly. At fist the clot hardened, which was causing sciatic pain for months. It appears since then the clot has become more jelly-like. It seems the aneurysm has softened and isn’t pressing on the nerve as much. Of course this is all speculation on my part. The interventional radiologist, my main doctor so far, is going to consult with the vascular surgeon and determine how to drain or remove the aneurysm since it is not shrinking. That’s my personal situation. However, some of you might be interested in my question to the doctor about recurrence. I explained to him that I have seen online (here) that some people have had the glue used on the AVM only for the AVM to return. I asked why that happens and if it could happen to me. He basically said that he was aggressive with me due to the large size of the AVM/aneurysm in me. He used the onyx glue, alcohol and coils. He explained that in many cases, the doctor might try to destroy the AVM in stages. Perhaps in some cases, that’s why people on here are having trouble with recurrences. Anyway, I hope my story might help give hope. Maybe the doctors need to perform these procedures in stages. Or maybe they aren’t doing enough due to lack of experience or competency. It seems in my case, using multiple methods probably ensured that this thing has been destroyed.
Hi. my son Austin, just had a pelvic AVM embolization on May 27, 2016. It was a large, high flow AVM. He is still in enormous pain and can barely put wight on right leg. AVM was in right lower pelvic region iliac artery.
He goes in for followup visit next week with interventional radiologist. Can you tell me if you had pain and how long it lasted?
Thank you, Kathy, Austin's Mom
I did have pain. I’m not sure of your son’s situation, but my pain was due to the fact that a large mass (an aneurysm) was left in my body for over 6 months after embolization. The mass put pressure on my sciatic nerve and internal organs. For your son, is the AVM itself large or was there also an aneurysm associated with it?
Hey are you an engineer? My dad is a civil engineer and GC. My AVM was large. It also was high flow, no aneurism was found. It was feeding a main draining vein around e prostate and rectal area. My pain started April 5 and was mostly in pelvis and more on right but may5 began having pain in rear end. Using the restroom became extremely difficult as it was similar to having a giant hemmoroid. It progressed quickly. I was told if I started bleeding from bowel movement it would be an emergency as it was being filled from arteries. They did a embolization of five arteries that were feeding a vein and had some collateral vein too. It actually really helped the rear end but now have pain in lower right pelvis and lower back to mid rectum. The low rear is mostly normal now. Hope to hear about your AVM. Is it causing pain or the other issue? Have they done any embolizations. Thanks
Just saw your AVM was sealed shut. I hope mine has stayed shut. I’m weary of the new pains. They don’t want to scan got for 6 months finally I convinced them along with parents to move it to 3.
Yes, I am a civil engineer. My area is geotechnical engineering. I discovered my AVM because I was constipated for over a week and had blood from internal hemorrhoids. The AVM was coming off one of the arteries in the pelvic area, unfortunately I can't remember which one. I think it might have been the internal iliac artery. Anyway, it appears my ordeal is not over. Since my last update, they drained the aneurysm and I thought I was done. Well, less than two weeks later (Tuesday night), it filled back up. They drained it again on Wednesday and tomorrow I go in for another angiogram and possible embolism if they find out the AVM is flowing again. I would think that's the case since it filled back up.
In relation to your condition, I had severe sciatic pain for months after the first embolism. Having the large aneurysm was probably the cause, but maybe your AVM is so large in itself that it is pressing on some of your nerves. That would be my guess as to why you are having the pain you describe. The pain I had did subside eventually, even before the aneurysm was drained a few weeks ago. I think the sciatic pain subsided due to the fact the blood clot in the aneurysm started to liquefy, thus putting less pressure on the nerves. That's only a guess.
As for your 6 month wait, I ran into the same problem. I ket asking for a follow up CT scan before my 6 month follow up. They told me that the insurance company wouldn't cover the CT scan if I didn't wait the 6 months. Now, if they deem it an emergency, I think that is a different case and would be covered, but you would want to go to the ER only if you felt it was a true emergency.
Well, I hope you start to feel better and get past this awful experience. I know I'll be glad to be done.
Oh, boy. Sorry for your worries. MY leg/pelvic malformation is just veins, not high-flow arteries which can spurt blood. I have had eleven emboss/sclerotherapies. Maybe the MD cannot predict, but I would have preferred to know it was being treated in segments. Also, I had no idea how my reaction to first embo would worsen for first 5 days. I did not know that the treatment was planned to cause a large thrombus,which would cause scar tissue.
Maybe as AVM shut closed, blood backed up into the area with a "weakened blood vessel wall". From that an aneurysm grew, when filled with high flow blood.
I accepted multiple stagind b/c there was improvement in each area. Acceptance of that was not easy. But then I decided I have a chronic illness.
I sometimes feel like this issue will never go away. However, I believe our lives can improve. It might take multiple procedures or surgeries, but it can be done. I completely understand the side effects of this condition too. Having a large mass inside me has not been pleasant. We can only hope one day we will be past all this.
Absolutely. I never give up hope. I fight the "status quo". I stay on top of new treatments b/c my fone is not going to ring one day, with news of a new treatment.
Plus I never forget that my VM has had tremendous reduction after the eleven treatments. There are always new developments on the horizon.
Good for you, Austin! Why wait 6 months when something could be wrong and fixed? It probably required your doctor's staff to do some arm-twisting with the insurance rep.You have to be an advocate for yourself, as you are!
We rarely have discussions on pelvic AVMs so I keep going back to your story. My VM is pelvic and extremity. I tend to talk @ the leg more.Recently, the pelvic area is worse.
My reason for recurrence has been that a "collateral circulation" develops in a yr or two. The malformed vessels are indeed sealed shut.But the force of blood (coming from heart) pushes thru smaller vessels that were not originally problematic. Hemodynamcs. I read your history and I have had normal post-procedure reactions of thrombosing (sounds productive, unlike "clot") They would last a month or more. Several inches, hot, tender. But the worse it was, the more I knew that scar tissue would form and forever seal off the aberrant vessel. Then I'd begin a process of re-absorption of the thrombus. It would become less and less hard' then a little squishy. Then finally re-absorbed.The lining would seal shut as the small thrombus was absorbed. The lining was scarred and I would never again have a problem with that particular (huge)vessel. Collateral circulation is my enemy. When I hit 55, I stopped having embos b/c the IV dyes can no longer be used. Too much risk for the kidneys.
Tho, if in your situation, I'd have to accept another IR treatment if that is advised.I don't have arteries involved, just low-flow veins. I wish I could see a map of where you aneurysm is? Near the midline with bigger vessels, that carry more blood with higher pressure? Up higher close to the heart? I don't think so. External iliac artery as branched off; but still arterial.
If you visit birthmark.org, do you think your IR has had that level of training in treating AVMs? You'd want a specialist in the AVM area; IRs do many things. Many cardiac stenting procedure, also some GYN issues. Also, they treat less critical AVMs than yours.You may truly have the best IR; I am not saying otherwise. .
I would consider this aneurysm to be high-priority.But are you getting a more wait-and- see attitude from IR? It could be emergent if you encounter certain circumstances? But I may be totally over-estimating the danger. Don't lift heavy things, don't do valsalva maneuver(a pushing down movement, as in straining with constipation. It increases the pressure in lower abdomen) No aspirin or NSAIDS. IMHO it needs to be deflated and then some sclerorising agent delivered, permanently sealing it shut.A vascular surgeon would have a different approach. If neuro ITs do it inside the skull (with such need for precision) then I don't think the IR procedure would be a danger-risk for you? What is the feeder vessel for the aneurysm.Vascular surgeon might be the way to go.
I must admit that my maternal grandfather suffered fatal consequences due to an aneurysm in his abdomen. He was 36, owned a tavern,carried several cases of beer. Plenty of bartenders carry that many cases, with no consequences whatsover. Maybe a sore back. But it involved the Valsalva push.An abdominal aneurysm ripped open. Just keep these factors in mind if you decide to have this treated sooner and not later. I am not a physician. Take what advice you wish, or ignore it. Or use it to ask your IT questions?
I am retired due to disability. So I am a non-licsenced health care professional. I consider myself a civil engineer of the human body, haha! I love to think of all the systems involved. Just to question some plans made by health team.
Thanks for your feedback. I just had another embolism yesterday. The aneurysm itself was in a vein. A high pressure artery in the AVM caused the receiving vein to balloon up. This happened over six months ago. They finally were able to drain the clot about two weeks ago, but the aneurysm filled back up a few days ago. So yesterday he tried to burn off the inside lining of the aneurysm.
Also, to answer your question on the location, I asked the Dr. It is a smaller artery that comes off the right internal iliac artery. It’s the part that feeds my groin area basically. I guess the other side of my body compensates for that area. He said it’s been compensating my whole life since the AVM has never functioned as a proper blood vessel.
Lastly, my doctor seems to know a lot about AVMs. He even consults with Dr. Yates in Colorado. Apparently Yates is a world renowned specialist in this area. I’m being treated at Florida Hospital which is a good hospital too. My IR has also worked closely with a vascular surgeon at the hospital, and I feel they are competent. My IR also has great bedside manners. He gave me his personal cell if I need to call him.
That all sounds very positive, right? Excellent care.
I just like to offer pts the questions that I'd want answered if I were in their shoes.You seem to have that "engineer's" approach to the human body.
Radio-frequency was used to burn off the interior of a perforator or connecting vein. It was brand, spanking new back then. Went so easily! Maybe you had that. You sound strong and empowered.
I think he used alcohol this time. Either way I am determined to get past this. I read up on your situation. I sorry they can’t do more. I hope you at least can live without too much discomfort. It’s amazing what improvements have been made since your ordeal first started. Maybe they can eventually do more.
Thank you. I know I bore people who are not in the AVM world.I wore my thigh compression garment to a BBQ last wk-end. "Oh, no
. What is it now, Eileen." If I focus on their under-reaction, I will have no friends left.And only my husband knows that I am prescribed low-dose oxycodone for pain. There is so much media judgement of pain clinics being pill-mills. A great pain treatment is injection of steroid directly into the genital nerve. Oftentimes, I feel instant relief. Every 3-4 months.
Alcohol embos are an oldie but goody. The IRs have developed awareness that alcohol is NOT to be used on superficial lesions. I was one of the early pts in whom a ulcer developed due to alcohol.It was necrotizing.....see, I bore myself Due to pain, today is not a good day. To;ow holds hope of being better!
Totally sealed AVM is worth at least 10&Billion$! Congrats!
Your new aneuysm in a small tributary of a blood vessel it sounds like it's a nuisance. Not at all a deal breaker.
I am ALWAYS happy when I hear of successful treatment of AVM!
Hey, I visited my vascular Doctor. He wants the radiology guy who did my procedure to order the cta scan. We see him on Wednesday. I understand the insurance part. I hope they will get it soon because my pain seems to have gotten worse in the pelvis. Was your aneurism from the AVM? Or something unconnected.
I see you live in deland, that is close to where my grandparent live. They are in sanford Florida. My dad said you do the soil tests and preconstruction stuff.
Try to tell you what happens Wednesday.
Later, austin
My aneurysm was directly connected to the AVM. I’m actually recovering from the embolization I just had. I get a follow up ultra sound in 2 weeks to see if this aneurysm keeps filling back up or not.
As for you, hopefully they can do something soon. If you are in severe pain I would go to the ER. I think that changes the situation from an insurance standpoint…I think. All insurances are different.
Yes, I am about 20 minutes from Sanford and your dad is exactly right on what I do. I actually work for the FDOT. We deal with the roadway and bridge foundations mostly. Anyway, good luck to you and I hope you get this pain you’re having resolved soon. Let me know.
This comment is in reference to the Insurance coverage questions for ER. It seems many insurance companies have a ph # for RN approval. The insurance companies should have a copy of ABSOLUTE symptoms qualifying for ER. Anyway, tell the RN what is going on and in the context of your general health situation. Bleeding hemmorhoids may not qualify for an ER visit. But an AVM in the area, with the possibility of arterial flow, is going to get you ER visit approval. Mention the word "blood squirted" and you'll get an ambulance. With paramedics.... I am not saying to lie. Just don't under-report. ....I must admit that I have not always made the best decisions regarding when to call for ambulance or drive to ER. My husband is fine now but last winter he had two neuro-events which resembled TIAs (mini-strokes) Both occurred when he was coughing violently. He did re-gain his neuro abilityies immediately. I should have called the RN phone line. Two TIAs could mean a big stroke is approaching. Ha! I gave him baby aspirin and strong cough supreesant. My adult daughter took him to ER and it turned out he had a collapsed lung. 4.4 inches had not perfusion of oxygen. Sorry to go on about an unrelated story; but I mean it to be illustrative.
As Engineer Guy has already pointed out, abdominal pain is not be taken lightly. Esp.in a person with your history. it could be caused by an aneurysm, a blockage. If this pain is in the high #s on the pain chart (above 5)then this could be blood building up.
Call the RN # on your insurance card. This is new pain ? and lasting a while, unrelieved by anything? Can you reach your vascular surgeon?