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AVM Survivors Network

Iron replacement has lessened extremity VM pain


#1

My hemoglobin has always been slightly low, under 12. Last physical exam, I was found to be deficient in iron and folic acid. Hemoglobin was 10.2. Colonoscopy ruled out colon cancer, which is first concern. A month after starting iron, it was Christmas and I was in much less pain even tho I was moving around! I truly believe it is the iron. Anemia can cause blood vessels to swell. I found sitting so painful, as I had a genital VM scheduled for embo. It stopped hurting! Now I read @ ferritin levels here. Please clue me in! I am 63.


#2

Update. VM pain has returned, the iron replacement was just a fluke. I should have had a procedure by Dr. Rosen diring Dec. 2018. Who can blame me for skipping it, when I was feeling so well while taking the iron? I am 63 and tired of this merry go round. But I just cannot be passive and accept all this genital/ buttock pain on left side. Tomorrow I see pain doctor who is credentialed in medical marijuana. I am tapering off the oxycodone. My social circle is BORED with this sfory, so I only vent with my husband. Friends and cousins question why I am giving up one drug for another? Mt life is focused on pain. I scheduled MRI for 2/25. I need a cardiology consult before next Rosen procedure. My heart gallops all nite. I take Cardizem, as directed. My cardiologist does not relate this to my VM of left genital area. Only my husband understands this plight. Ppl ask me to talk of other topics besides my VM. So I talk of ggrandkids, kids, husband. Then I get the response that I need to find hobbies, get out of the house more, etc. Please, wd someone relate to my experience? I read the news, we watch a movie online. So those are topics I am ready to discuss…feeling a little dissed by ppl who take their health for granted.


#3

Eileen,

Hi. Your AVM does not sound comfortable at all! Ouch! It sounds good that you’re booked in for the 25th.

In my case, my AVM was in my brain, so I was quite concerned about it and probably went on about it more than I should but I agree maybe your friends are too comfortable with their own good health!

I did find setting myself a little project to do while I was waiting for my operation was a good thing, though, as it stopped me having too little to think about other than my AVM and helped me ignore it a bit. So I would agree with your friends a bit: getting a little something else to focus on is a good thing and I think they’re good friends, they just don’t want to talk about it all the time.

If you were locked in the house for a month, what would you take with you to stop you going stir crazy? Get one of those!

I do feel for you! Very best wishes

Richard


#4

Thank you! A little kindness goes a long way. I did want to catch up on the series The Queen. Good plan, my friend.


#5

Hi Eileen,
Long time no talk. I too have low iron and have all my life… Iron replacement helps the fatigue, and coldness but not with my VM. In fact I find that giving blood helps. My theory is reduced blood volume = less pooling in my leg. That is if I can get my iron high enough to donate. For me the trick is a Chipotle steak burrito before :slight_smile: I started doing platelet donation just to get more volume out. Mixed results of course as with anything. I’m sorry your back in pain. My last embo was Dec 2017 and it just doesn’t quite do as well anymore. I don’t know if its a scar tissue problem or a less aggressive doctor problem. :frowning: Best of luck! I hope you get relief. I took up hand crafts (knitting, embroidery, cross stitch). I find it easier to talk about work or how my kids are then the pain. People just can process a life of pain unless they’ve done it. I also think there is a thought that you do it once and its gone. That’s just not reality for us. Virtual hugs!!


#6

Always good to hear your reassurance. I was once like you, young with children, on top of this Venous Malformation situation. I love to hear your responses to women re childbirth! So glad I was brave enough for two pregnancies! And the VM was not permanently worsened by pregnancy…Menoupause is what worsened my situation… I take your scientific conclusions very seriously. You are almost describong “blood-letting” in your most recent response.we are similar yet unalike. When I am anemic, blood vessels naturally move toward skin level. My VMs are not very deep. PERHAPS yours are. So the closeness to skin allows for the very painful dilation, causing inflammation. Anemia can cause blood vessels to change in their function and design. The body is an incredibly machine, and the blood vessels accomadate so red blood cells can bring oxygen so cells do not die of oxygen starvation. I have read this in medical literature and it resonates in my situation. I totally understand what you are describing as well. Have you ever considered HHT? Birthmark.org had a Q and A with an Italian AVM expert. I described my recent situation and he immediately mentioned being worked up for HHT, a bleeding disorder. So I search for a hematologist who wd know of such a connection: AVM and HHT. My first childbirth resulted in near-fatal hemorrhage.I had Uterine Artery Embolization ( UAE) during menopuase.My newest inquiry is Medical Marijuana, available by prescription in NJ. Cannabinoid receptors exist in our brains, tho I never smoked a joint. My Pain Clinic believes MM may help with my brain’s perception of pain resulting from inflammation. It is an expensive option as insurance does not cover it. I will consider the pure drops under the tongue. But never a dose that will sedate me .I want Pain relief only if I remain clear-witted…Vaping involves release of formaldehyde, which is carcinogenic.I will post the results.I have two beautiful grandchildren now! Much to do!


#7

As I mentally brace for yet another embo, I reflect upon your posts, Rachel2.


#8

Thank you for your calm reassurance all along, Rachel2. I face another embo to’ow, but I follow your reasoning. Go with the flow,knowledge is Power. I was a much stronger person when I had younger kids. May I add that your one suggestion of " bloodletting" just does not check out in the medical literature. Pls let me know if you have another source. I always respect you suggestions as based on sound medical theory. I wd love to have blood withdrawn from my current bleb. But none marrow replaces the blood lost.i have had episodes of blood loss followed by bone pain.In about 2 or 3 days the blood volume is replaced, and it agAin is present in the “lakes” that are an abnormal part of my vascular system. Right now that "laden is on my left butt. Doppler scan has shown all the ineffective valves below it. Valves normally have two flaps that close
Mine do not close, soo all the venous return blood just backs up. That is where your encouragement in compression is so important to me
Thanks for all.your help


#9

Sorry I read your reply and forgot to respond. My VM is very deep in entirely in my Soleus muscle. In fact its often hard to find on ultrasound because of how deep it is. That being said it shows up on MRA even when the pain isn’t too bad…Thank god MRIs and MRA are so much better now. I don’t think I would have been properly diagnosed if I was born even 5 years earlier than I was. I have a Liver VM too it inflames every once in a while and I note what the pain is and try to ignore it. I’ve considered HHT but I don’t have nose bleeds very frequently or any family members that have AVM/VM. My mother also pointed out would it change how I treat my condition and I think the answer is no. So I suppose unless I’ve passed this curse onto my kids I don’t know if it changes much. I know I’ve passed on my CF carrier status on to one of my kids. I’d be interested to hear how MM does for you. I’m so sick of narcotics. I hate the zombie feeling. I hate that they stop working at low doses overtime. I hate how the screw up my GI. If it works for you I’d love to hear it. Best of luck on your next embolization. I’ve only done 5 total embolization procedures thus far and with as deep as mine are I rarely have many complications with wound healing that others do. Mine all have to be fluoroscopy guided and under a general which stinks but better that then nerve damage… Best of luck. I hope it goes as well as can be expected and your recover time is short. I pray you find relief! Stay strong you’re such a great member of the community. Feel free to reach out if you need to commiserate.


#10

Rachel,

I don’t know if either of us should worry about HHT but my family carry CF, too.

Richard


#11

TY so much. Recovering now I downplay the pain and put this embo off for a few yrs,dealing with pain center. Dr Rosen was shocked by how huge the cm was in le ft t cheek butt.


#12

What is CF? As for my most recent embo, I am so glad I had it done. My last embo was 4 yrs ago, and I got disgusted when terrible pain emerged in a new area
I


#13

So I arrived at the false conclusion that the embos were causing new areas of pain. Dr. Rosen explained this wk that I have obviously been in significant pain for the past few yrs. This was evident on the MRI. A new branch of the VM had enlarged. It was much deeper than all the other 13 embo sites. This is a much different recovery! DEEP!


#14

CF is cystic fibrosis. Its a genetic disease which impacts mucus so digestion and lungs mostly. They now screen for it in infants when they are born. I knew it ran in my family (one of my mother’s cousins) so before we had our first we tested and I carry the gene but my husband does not so we would be VERY unlikely to have a child with CF but we do have one that carries it. I don’t know why it would have ANYTHING to do with AVM. I’m glad you got an embo and hopefully it has quieted things down a bit. Sadly other things tend to become more noticable when the big thing quiets down. I understand deep recovery. It aches and takes time. I would say a week or two with rest and ice for me. I hope it all quiets down soon and you have some relief. However brief it may be. Its about all we can hope for with this condition.


#15

Oh, I knew of that CF but did not connect it with AVMs or HHT. Dr. MILLER did not see any correlation between my iron replacement and the brief reprieve over the holiday season. Maybe a little brandy in egg not is what helped. Just kidding…


#16

Rachel2, you mentioned your liver VM. Do your liver enzymes elevate when it inflames? I have episodic elevation of liver enzymes and the GI is calling it Auto immune hepatitis for now. Perhaps I should have a liver scan. How were you diagnosed? I hope you and family are well.


#17

Hey, my pain level is down to motrin level!! I wear compression too, unless in bed. I sure hope this lasts! Wishing you all the best in your journey, as well.