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AVM Survivors Network

AVM Update and Questions?


#1

Well a little update- I finally got a walking boot, yay! :slight_smile: It will definitely take some getting used to lol I’m not used to walking normally/heel toe. Furthermore I realized how little muscle I have in my leg/foot- I tried going up a flight of stairs and I barely made it! Lol :slight_smile: I have so little muscle I can barely lift my foot up when I have the boot on, so I’ll definitely have to work on that :slight_smile:
I’m still waiting to hear back from Dr. Yakes in Colorado, and while I’m waiting to hear back from him, I’m scheduling appointments to have an MRI of my left arm and neck done to check for possible AVM’s.

Quick synopsis of the arm/neck situation- 6 years ago I got hit in the back of the head, basically right where your head meets your neck and it curves in (sorry that’s the best way I know how to describe it). I felt the sharpest pain I’ve ever felt on my neck and my vision went black, I couldn’t see anything, and I honestly don’t know how long I was like that (no one ever told me) but it felt like forever. When my vision came back my hands were on my knees and I was only like a foot off the ground, someone told me I stumbled forward when I got hit but somehow I held my self up. About 6 months later I got hit on my arm and again that same sharp pain, now with both of these injuries I’ve seen multiple dr.'s and they’ve all said there’s no issue/nothing they can do.

The reason I think they might be AVM’s is because it’s a constant pain with both (just like my foot) and it gets worse when I use them (with my neck when I turn my neck), again just like my foot. Now I’ve had an ultrasound of my arm and my primary care dr. looked at and said that it’s a venous malformation and that there’s no issue/nothing needs to be done. I believe this is incredibly false because everything I’ve read on venous malformations says the patient feels no pain/has no symptoms and I’ve haven’t found anything that talks about enlargement of the patient’s skin (it’s so big in my arm, my arm is no longer flat, it’s like a giant mass taking over my arm). Furthermore I’m in constant pain and it inhibits my daily life/what I do so regardless even if it is a really rare and messed up venous malformation it has got to go :slight_smile:

Now I’m wondering if anyone has been in/knows of someone who had a spinal AVM and extremity AVM’s? Also how long did you guys have to wait to hear back from your surgeon to start scheduling/etc.?I do realize that it could very well be any number of messed up medical issues causing the pain in my neck and arm. But I figure after years of dr.'s telling me there was no issue (just like my foot), I figure it’s as good a place as any to start.

Sorry for the long post, I do try to make them as short as possible I promise :slight_smile:

As always any thoughts, advice, own experiences, are greatly appreciated :slight_smile: Thanks!


#2

Koala!

Use the search magnifying glass in the green banner to search stories on this site. I’m not sure you’ll find many, if any, extremity+spinal stories. I do know some people do have multiple AVMs, so maybe search “multiple”.

I do think, from what I’ve read, that extremity AVMs can be visible and there is a thin line between such an AVM and a hemangioma or birth mark, so I’m not surprised there.

The other area I would look into or ask about is whether you have AVMs elsewhere. Multiple AVMs can be in other organs, too – lungs, liver / gastro which would be a bit of a downer but good to check out. There is a correlation between multiples / these areas and a condition called HHT. So as you get more results on what your suspected AVMs are, consider asking if there is a need to check out HHT.

Have any of your immediate family had AVM-related symptoms? Again, HHT possible indicator.

Hope this is useful rather than frightening. Just worth checking out.

Very best wishes,

Richard


#3

Hi Richard :slight_smile:
Yes, I’ve been searching away lol I spend half my day it feels like, just reading old posts :slight_smile:
I just posted this in case there was anyone new in a remotely similar situation that hadn’t posted anything about it, etc.

Honestly that would not surprise me at all (if I had multiple AVM’s in other organs), haha :slight_smile: though it would be a bit of a downer

I do plan on getting tested for HHT, no one in my family has had any AVM symptoms that i’m aware of but I know they could have an AVM and not have symptoms, or have symptoms and just not say anything (most of my family hates going to the doctor). I also know I could be the origin/starting point of HHT in my family

Haha as i’m typing this I just realized there’s 3 people on here that have posted on forums about having low ferritin (I just decided to search ferritin for the heck of it) :smiley: Haha sorry for the sudden outburst :slight_smile: about 3 years ago I was tested for several different neurological conditions/diseases (trying to figure out why I’ve had the issues I’ve had my entire life), and they all came back negative/normal the only thing that was different was my ferritin level was lower than a newborn baby’s. At the time they said they didn’t know why I had that low of a ferritin level and that I just had congenital ferritin deficiency disorder and that was the end of it.

What i’m trying to say is it’s hysterical that another one of my health issues is possibly/most likely connected to my AVM


#5

Hi Koala-

Yes, it is certainly possible for people to have multiple AVMS/VMs, so don’t let anyone tell you that your neck or arm may not be a legitimate problem for you. If you are already a patient of Dr. Yakes, I’m sure he would want you to get some good imaging done so that he can determine what is giving you a problem. Many doctors don’t understand AVMS, particularly extremities. I had one in my tongue and was misdiagnosed repeatedly by many good doctors. Don’t give up and keep digging until you get answers :slight_smile:


#6

Hi Koala,

I had an extremity AVM on my head (between the skin and the bone as opposed to in the brain). I could definitely see it, it formed as a bump on my head.

After my meeting that told me that I did have an AVM, it took almost a year before they scheduled my surgery. To be fair though, they had to run extra tests because they believed I had had two when in reality I had one. So my guess would be about five to six months before it was scheduled.

Depending on the doctor, hospital, etc your surgery may be scheduled earlier.

It is possible to have multiple AVM’s and to have a mix of extremities and non-extremities.

I hope this helps and I hope everything works out for you. Good luck!


#7

Hi Katie :slight_smile:
That does help :slight_smile: it’s nice to have all this info from people on here, that way even if a dr. says that something isn’t true/not possible i can reference this website
Sorry for the late response

I found out yesterday that as soon as i get the final ok by my insurance my surgery will be scheduled about the first week in august, which is a relief but it still sucks just because i want all of this to be over (if that makes any sense)

Also when you reply to someone on here it comes up even if you don’t put their username right? Or am i supposed to put @Katie_T for you and @DickD when i replied to Richard, etc.?

Thanks Again


#8

If you use one of the grey reply arrows on the right, it replies to the post (and any people who are watching the thread). If you use the blue Reply button at the bottom, it writes to all.


#9

Hi Debra

Sorry for the late response
Yeah, i talked to one of Dr. Yakes staff yesterday and she said any additional testing he wanted to have done he would just do once i was in colorado. which sounds really odd to me but, i guess what do i know.

Thanks :slight_smile:


#10

Oh i see :slight_smile:
Thanks Richard
Sorry i was kinda confused


#11

That’s OK. It’s not that obvious. If anyone wants to check how stuff works, there is a guide.


#12

Hi :slight_smile:

Yes it comes up under their comment as a direct reply to them, you don’t
have to use the usernames.

I’m glad I was able to help you!

I’m happy you’re on your way to having your surgery. Keep us updated :slight_smile:

Good luck !


#13

Thanks :slight_smile:
I will!


#14

Hi everyone, :slight_smile:
Haven’t posted an update on here in a while
Anywho it’s been pretty much the same, still dealing with pain, pain meds, icing, etc. my images got sent to another unknowledgeable dr., dealt with more craziness from my insurance.
And now (as of yesterday) the last thing I was told by my insurance is that they will approve Dr. Yakes once he is authorized for my insurance Yay! Haha :slight_smile: Granted i’m not taking that to seriously because they’ve changed their minds about what they would and would not approve about 5 times but hopefully this is the last time and I will be able to see Dr. Yakes and be done with all this. :slight_smile: Well that’s pretty much it hope everything is going well for everyone


#15

Well another update, my insurance want’s me to see a Dr. who is somewhat knowledgeable of AVM’s, but very vague, and came off as pretty unsure of himself when I met him. Now he claims that all extremity AVM’ers (that have been treated by him) are left with some sort of pain (which I have yet to read or see anything that supports that claim) even once their AVM is treated but they are grateful that it is a lesser pain and they are able to go about their lives and do what they please, though he also added then that some are left pain free. I also never thought a Dr. could give that vague of answers: whether it was on his success rate, how many he has done, etc. So with all of that he wants to use onyx glue and coils and do both at the same time since i’m so symptomatic. He didn’t say what complications any of his patients had, what the complication rate was or anything, and frankly I was in to much pain to even think to ask those things until hours later. So, I now have two Dr.'s: Dr. Yakes who can fix my AVM and VM at the same time with only ethyl alcohol and who feels very confident he can get rid of all of it, and who has a 95% success rate, and who has treated hundreds probably thousands of patients. And then there is the Dr. my insurance wants me to see, who is completely vague, whom I have no information on because I’ve yet to find a single publication, article, or even a patient posting about being treated by him on any AVM facebook page etc. Who seems to have hardly any confidence in successfully treating me, and me being left pain free, and who quite frankly I don’t trust. And yet that’s the Dr. my insurance want’s me to see because he’s in IL. Got to love the health care system


#16

So Sorry you’re going through all of this. Insurance stinks sometimes, can’t live with it, can’t live without it. If you are looking for a doctor in IL. I saw Dr. Volgelzang and Northwestern with good success. I know there are a few at Loyola as well who have good reputations. Onyx glue is generally only recommend if your AVM/VM is on the surface, in this case visible. Coils would be to stop the artery side.
I have a VM in my leg and alcohol has been successful for me but I need treatment every 4-6 years. Mine is very deep so there is no concern with wound healing thus no need for onyx. I also have an AVM in my liver which I’ve decided not to treat unless it starts causing more pain. I truly hope you can find relief. I’m going back into alcohol again this year with a new doctor(because I moved since Volgelzang or I would have gone back) and I was also a bit scared. But the doctor said all the right things and understood that after 22 years of dealing with this thing in my body I know more about it than he does from one crappy MRA. Keep fighting!!


#19

Well a little update since I haven’t posted on here in a while. I haven’t had anymore embolizations/treatments since I last posted. I had to deal with a lot of health insurance drama but, I finally have my referral for a third procedure. Yay! Only have about two weeks to go. Other than that I decided that I’m only going to do so many procedures (I haven’t decided what the exact number is yet) and by that number if they aren’t working in any measurable way I decided to have my foot amputated. Not exactly a decision I saw myself making in my 20’s but I decided I don’t want to be someone waiting for my miracle while my life is passing me by


#20

Hey,

It’s great to hear from you! And two weeks is very close! I hope everything goes really well for you. Are you seeing Dr Yakes or someone else?

Wishing you all the best!

Richard


#21

Thanks :slightly_smiling_face: I’m seeing Dr. Vogelzang at Northwestern Memorial who was recommended to me by @Rachel2


#22

Another update :slight_smile: I had my third procedure. It went as well as you can expect …They used the most alcohol out of all of my procedures and they also did sclerotherapy, I had 25 injection sites :tired_face: lol my heel looked like a blue/purple pin cushion… Now I wait :slight_smile: and go back in a little over a month for my fourth procedure . Have to say this is getting a little monotonous , this being all I do and not making any measurable progress (as far as my pain level)… Is it horrible that i would rather lose my foot than have to go through this again and again?? Because quite honestly, if i woke up tomorrow and someone said you’re going to lose your leg and arm today. I would be so happy and relieved … which sounds really screwed up but it’s true. Obviously it would suck losing multiple limbs and i would have to learn how to do things differently. But at least i’d be able to do things… Sorry for the dark and twisty post just needed to vent :slight_smile: hope everyone’s week is going better than mine


#23

Makes perfect sense. I have felt myself thinking "oh, if only mine would bleed and then they would have to do something about it. I think it is stress. Or frustration! But we don’t always have balanced judgement.

I worked many years ago as a policeman and one evening, we were gathered in the parade room, waiting on a brief for a raid. While we we’re there, one of my colleagues was saying to a colleague “when we get into the kitchen, you find a knife and have a go at me. Then I can have a few weeks off”. Very strange conversation but driven by the real knowledge that we were going into a dangerous situation to arrest a guy who was known to use knives.

So… completely understandable.

Lots of love,

Richard