New user. feeling scared and hopeless

I got diagnosed with my AVM about a year ago after I found a lump on my hip that I assumed was a cyst. I had an MRI and was told that i had an AVM but i wasnt told anything else. The doctor told me to find someone else to treat it. i called every doctor around and when they saw my scans they refused to treat me because it was too complicated. i was told we wont touch it, we wont go near it, good luck finding a doctor that will. Finally i found out that there was a hospital close to 4 hours away from me with a vascular team that specializes in AVMs. They were the first ones to sit me down and tell me how serious it was. My AVM is very large and complex, it starts at my hip and extends all the way through my pelvis. They have told me that there is no cure and that it is just as bad as cancer because no matter what they do to it, the veins and arteries will just keep spreading and growing, so i have to get embolization surgeries on a regular basis for the rest of my life. If i dont continuously get surgery i will go into heart failure and lose my leg. I have had a few embolizations so far and they have been hell. The first two weeks after the procedure my hip is swollen 3x its normal size so much so that my left leg is a few inches longer than the other. The pain is excruciating and i cant eat for the first week because of how bad the nausea is from the mixture of being under anesthesia for 4+ hours and the immense pain. Also my sciatic nerve runs right through my AVM so the embolization is causing nerve damage and i am told that with each procedure the nerve damage will get worse. On top of everything, when my leg isnt numb, it feels like it is catching on fire. The hardest part of all this is trying to cope mentally. The fact that i will be dealing with this my entire life on a regular basis makes my brain want to shut down. I feel like this AVM has taken a part of my freedom and my youth and between the depression and stress i honestly dont know how im able to handle it all. Ive been trying to find a tiny sliver of hope but its hard. This AVM has been one of the worst things to ever happen to me.

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Hello, @moonglow500

Welcome to avmsurvivors. If I’m honest, I don’t know what to say. I understand your situation and how you feel about it.

I’ve added you to the @PelvicAndUterine group but some of the things you describe will be the same sort of troubles that those in the @Spinal group face: the impact on your sciatic nerve, for example. I hope you can get a little moral support, at least, from people in a similar situation.

AVMs occur in a number of places through the body and sometimes they are operable and sometimes they are not. As well as yourself, there are also people who have a brain AVM for whom an operation is not practical, as the damage that would be done in trying to operate would be so much as to ruin their capabilities.

So, it is lovely to meet you. I hope you’ll find some comrades here in a similar situation.

Very best wishes,

Richard

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Hello @moonglow500

I think many of us (if not all) feel the stress and anxiety of these avms to varying degrees

I’m sorry to hear of your struggles and I can certainly relate to the mental distress of life at times and health

Some are for it, some are not interested but I found a therapist can sometimes help and work wonders to help you see that sliver of hope/light and give you tools to help

I can so closely relate when you say it’s hard to find that sliver and I wish you all the best :slight_smile:

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To all.AVM folks, I went through same. I was scared, felt helpless, depressed, and even angry. My AVM is in my pelvis and I have had so many surgeries since 1990 or so that I lost count. I was born with this condition and it effected all facets of my life. Excruciating pain, bleeding, and on and on. I was blessed to have been referred to Dr. Robert Rosen. He is THE BEST!

ThanK you!

Tom

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Your story sounds a lot like mine. I had numerous doctors refuse to treat me. It was really expensive making all of those appointments, getting new scans for many doctors, and then traveling to see them. It was always so frustrating when they told me after about 5 minutes of looking at the scan to go somewhere else.

When my leg would feel like it’s burning, I would put damp towels on it to kind of cool it off and lie under a ceiling fan with my leg elevated on a pillow. It kind of helped, but not always. Sometimes I would try to sit in the bath to help with the pain, but I had to be very still or else I would throw up.

Try to go see Dr. Robert Rosen in New York. He is truly the best. After so many failed surgeries in the past, I was skeptical that he could help. I only saw Dr. Rosen twice and I have been AVM free for 12 years now. If you call the office, they can arrange for your MRAs to be sent over and he will look at them and tell you if he thinks he can help. He is worth the trip. They may also have financial assistance for travel.

I’m so sorry that you’re experiencing this. It is scary and frustrating. I have been seeing a psychologist because this experience and all my surgeries left me with PTSD. It is helpful to talk about it, but it does feel like people don’t really understand how painful it is.

Catherine

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where was your AVM located? I have been told that mine cannot be removed due to how large and widespread it is.

Mine was in my pelvis and my leg. I would really encourage you to get a second opinion/teleconference with Dr. Rosen. If you call their office, they will tell you how to forward your scans and medical records and then they can talk to you before going out there. I suffered for 13 years with my AVMs and went to many, many doctors. I had lots of surgeries that made it worse, and went to specialist after specialist that wouldn’t even operate. It was really awful. I finally got it taken care of with Dr. Rosen. He was the only one that could help. I went all over texas seeing surgeons and then specialists in St. Louis as well. I talked to doctors in other countries too. I was so grateful for Dr. Rosen. I’ve read some of his journal articles since I have access to PubMed and research journals. He seems to have operated on some very large and complicated AVMs. I’m not sure what kind of specialists you’ve been seeing, but I went to some that were highly regarded early on that really had no idea what they were doing with me. I really thought I was going to die because I was in so much pain before my operations with Dr. Rosen.

http://avmcenterny.com/about-us-rosen/

Catherine

was he able to cure your avm completely? or just get it to a point where it needed no further treatment?

I’m pretty sure it is cured completely. It has been 12 years since my last surgery and I have had a couple scans since then that show no sign of an AVM. The only pain I have now is a very slight sensitivity in my leg that I think is from a surgery I had in St. Louis that was unsuccessful when I was 18. I’m 34 now and I feel really good most of the time physically. It is just the PTSD that I struggle with now mostly. I would recommend talking to a therapist as well. I feel like I’ve gone through so much with this pain, but I have so much to be grateful for. I hope that you can talk to him. He really is the best. :slight_smile:

what surgery did he do that cured it? I have been getting embolization but i am told that i will have to get them my entire life because they said that no matter what they do, my veins and arteries will continue to grow and spread.

I had two embolizations with Dr. Rosen. At my second surgery, he put in two platinum coils (really small) that stopped the bleeding. I had had many surgeries before that and every time my AVMs grew back worse. I promise that Dr. Rosen is the best. I really hope that you can get in to see him! I think you will feel so much better after talking to him.

@moonglow500 Welcome to the group and so glad you found the site. Your embolisms sound very painful, I cant imagine what you have been through my avm is in my head and just the dye makes me sick and have to take steriods ahead of time and I sick for a few weeks post. In the USA Dr Michael Lawton is supposed to the best for AVMs and is now at Barrow Hospital in Arizona. I think he does remote consults. I know he has been able to remove avms where other drs have told people that they could not be removed. He used to be near me in San Francisco at UCSF and I have seen his work. He was almost my dr but I was already at Stanford.

How are you holding up? Just wanted to check in.

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I’m hanging in there. I still haven’t spoken to Dr.Rosen yet but I plan on it. Im just so nervous because I’ve already been told that my AVM is like cancer and it’s incurable and will just keep growing and it’s been hard for me to accept but I have.you told me that Dr.Rosen was able to take care of yours and I’m afraid to get my hopes up if he tells me he can’t do anything differently for me or treat me more effeciently. At this point in my life hoping for better feels like a fairy tale wish and I’m so scared I’ll be dealing with this thing for the rest of my life. I’m also scared because if it keeps growing like they say it will I’m afraid I’ll be in so much pain in the future that I won’t be able to walk, like how it is after my embolizations ,not even including the nerve damage that will supposedly get worse. I keep hoping that maybe dr.rosen will be able to perform a miracle but that’s even if I’m able to get out to him because I’m so far away.im just tired of waking up every morning and being scared for my future.

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I’m not sure how I would approach it. I think I’d take it as a “possibility” that sounds worth exploring.

It’ll be a bit of a rollercoaster probably. If it were me, I think I’d see if I could do it with my emotions straight down the middle and resist letting them be drawn one way or the other until the final answer is given. Maybe that would do it. No idea how to keep them straight down the middle though.

When my son was born, he was not well – was a month premature and had an infection and went straight into NICU. My wife was equally unwell, having reported chest pains during labour and was retained on the delivery ward overnight in case of a pulmonary embolism. So on the day that I was at times overjoyed (I had a son; for some reason I expected a daughter) I went home empty handed and no clarity that everyone would get through the night ok. Quite an interesting day.

I found myself very much reserving my emotions for later in the week. So maybe like that. Something to explore without allowing yourself to get too invested.

They both came home a week later perfectly well (phew) and I started to relax and maybe celebrate.

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Ugh. I am so mad at that doctor that told you it is like cancer. I had so many specialists tell me different things over the years. They really have no idea what they’re talking about sometimes. When I was 18, I had a major surgery where I nearly died and my AVM just grew back in less than 6 months worse than it was before. They didn’t know what they were doing. I was so so so grateful to find Dr. Rosen, but I was also scared at the time because I didn’t know if he was going to make it worse too. He really is the best. I could not believe that it didn’t grow back. I kept waiting to have that horrible pain again, but after a while, I realized that it really was gone. I still get scared sometimes that it will come back. It really affected every aspect of my life. Walking, relationships - sex! It was really awful. I had an MRA done of my pelvis recently because I was having some pain, but there was no sign of an AVM, just some cysts on my ovaries. I never thought I would be AVM free because so many of the specialists I saw when I was younger were telling me the same kind of crap that they’re telling you. Don’t give up hope. Dr. Rosen’s office should be able to look at your MRIs/MRAs and tell you what they think without having to travel. If he thinks that he can help, go for it! It will be worth the money. I wish I could help, but they don’t let you do that kind of thing on this site. Dr. Rosen’s office also has some funds available to help with travel expenses. It is worth calling to see how they can help. I really think that he’s your best shot right now. I know that it is scary… I went back and looked at some of my original emails to his PA and they were so depressing. I didn’t feel like anyone could help at the time. I had two embolizations with Dr. Rosen and I wish I had seen him sooner! I was misdiagnosed and told crazy things for years by “the best” specialists in my area. Dr. Rosen was really worth the trip. I was so scared that I would lose my ability to walk. I used to have a limp when I was in pain and I was so embarrassed by it. I could never do the same things that my friends were doing because I was scared that my AVM would bleed. I know how scary all of this is… I’m really glad that you found this website. I hope that you can finally have a successful operation and get better! I still have trouble dealing with post traumatic stress after all of this. I hate going to doctors. The good news is, once you get through this, you will find strength that you may not have known you have. Sometimes trauma can help make us more resilient in the future. :slight_smile:

Catherine

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One thing I’m curious about is if he was able to “fix” my AVM, I know that I would still need scans in the future to make sure the AVM hasn’t grown or worsened anymore. Is it even safe to get a MRI/MRA since they use metal coils to embolize the AVM? I’ve already had two embolizations but I’m not sure how many coils they used. Also I have contacted Dr.Rosens office and sent over my records so hopefully I will be hearing from him soon. I don’t want to get my hopes up but at the same time I do have a little hope now for the first time since I was diagnosed. If he is by some chance able to take this immense burden away from me I can’t even imagine how much my life will improve.

I think it depends mostly on what the coils are made of but there are a number of different scanning programs that they use and I think if they know exactly what you’ve got in there, they may be able to choose a scan that doesn’t over excite the material.

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yes, I had the platinum coils put in… they can do an MRI or MRA after. My doctor here called Dr. Rosen’s office to make sure it was ok. I am glad you sent in your stuff! Let me know how it goes! I really hope that he can help you like he helped me! It really was the most awful thing I have ever been through. It was so painful and scary. I really hope that he is able to help! :slight_smile:

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One thing that kinda bums me out is that because of where my AVM is located my hip and buttcheek looks like a Kardashian on one side and tiny on the other since I’m a petite person. I’m assuming that is something they probably can’t fix which sucks because now I’m really insecure about wearing anything form fitting or like a bikini. Oh well I guess lol

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