Left foot has been bleeding profusely

I have had problems with the big toe on my left foot for about two years now. It has gotten progressively worse. Yesterday, while I was in the shower, I bumped my toe and was very annoyed to discover bright red water below me when I looked down, after a shriek that the whole apartment complex probably heard. The bathroom ended up one big bloody mess. It wasn't wanting to stop on it's own, and it hurt to put the needed pressure on it. After a while of applying pressure and it not slowing, I made my husband go grab my Afrin that I keep on hand for my mouth and throat bleeds, and my Stimate/Desmopressin that I take because I also have a bleeding disorder. I took my usual dose of Stimate and applied the Afrin topically. It slowed within minutes, and stopped maybe half an hour later. This isn't the first time this has happened...this is just the most recent, and I guess it shocked me, because it wasn't hit that badly.

I bandaged it, but it still bled throughout the night. Not like a geyser, as it had been in the shower, thankfully, but it still wouldn't behave.

I then woke up while having a mouth bleed this morning. I don't know how much I bled, obviously not HUGE amounts, but enough where I was sick from it and had more than just the acid reflux I get from swallowing blood at night. I have been so fatigued today and slept way more than I wanted to. I'm not surprised, but I'm not happy about the situation

I have no idea what to do about my foot. It is affecting my ability to walk and it hurts. It is pushing the nail out and to the side as well. I already have enough pain from my head to my pelvis. I was hoping the legs and feet would be off limits :p My specialist is Dr. Suen in Arkansas. I have been battling with medicaid to get back down there for needed surgery. I have tried all over NC and VA and no one will touch me because I am "complicated". I have no idea where to even begin with my newer problems. I have been to a podiatrist and they misdiagnosed me several times, even when we tried to help guide them (initially they tried to put it all down to an ingrown toenail!) and now they are pretty much saying "I don't know what that is, but I am not equipped to help you and I do not know anyone who might would be."

Apologies for the length. I am just very frustrated, and very, very tired. I would love advice of any kind. It already bleeds when I walk, I don't want it to get to the point where I am having massive bleeds every time I try and put my weight on it or try to walk.

Good morning Leela,
What I had to offer this morning was prayers for you. I prayed that Medicaid would come thru for you or that you would find someone more local. Is it that Medicaid wants you to go to a local Doc?
I travel to see mine as well but I have regular insurance (so far) and often wonder what will happen when I have to rely on the Govt.? I also pray for your being tired. It is hard to fight and feel like your body is failing you. But you must, call on His strength and also that of your loved ones. I care and don't even know you..Blessings Les M.

Thank you very much, Leslie :)

We have all been praying here since January (more so than usual) when I started bleeding more from my throat and mouth again. It was to the point where I would choke on clots, and waking up in the morning with my hair matted to my head in sticky blood was back to a normal occurrence. Thankfully, I have had a bit of a reprieve from that, but we all worry that it is the "calm before the storm" as has happened in previous years, where I would bleed pretty badly, only for it to stop (more like slow down, it never really ceases) before I would have an emergency event land me back in the ICU. Either way, it has granted me some time to sort out this insurance mess...

With Medicaid : Yes, that is pretty much the case, or it WAS pretty much the case. They said that and then finally relented, because they knew I had been going there for years. Now it is pretty much Arkansas saying they will not accept North Carolina Medicaid.

Here is the back story in case you are interested, and for anyone else dealing with similar problems with Medicaid and/or Medicare.

I have been treated for Arterio Venous Malformations since the age of 2, when I started having massive bleeds from the mouth. I won't get into the details of my health and treatments, there is just so much, but I was initially on Blue Cross Blue Shield NC and even with that, it was very difficult for us financially. When my mother ended up unemployed, I ended up on Medicaid. It was great for everything in state, but after so long, there wasn't anything in the state they could do for anymore, and most doctors were afraid to even touch me. I lived for a time in VA and had the same problem.

Found Suen when I was 14, through a miracle, or serendipity...however anyone wants to look at it :) They decided on a plan of action, only to be held up by Medicaid when it was time to schedule it. We were in VA at the time. We were told that Arkansas would take NC medicaid, so we moved back down to NC, and we have family here anyway and needed the help with me. I was in and out of the hospitals here most of the time. Arkansas declined NC Medicaid after they told us it would be fine. They gave us the excuse of NC being behind or not paying all of what was required...some bull like that. I deteriorated. I had a relative that happened to have a friend in law in Little Rock (she is retired now) and she helped us bombard the Governor's Office as well as the bureaucrats at the hospital. I basically had to get to deaths door before they would do anything. No one here was even going to attempt an embo, which was ridiculous because of how bad I was. I was given blood continuously. They finally approved my treatment if Suen did it at the Children's Hospital instead of UAMS. I guess they didn't want the death of a 14 yr old on their conscience.

There was an agreement made where they would take the NC medicaid, but I was a minor then, it doesn't apply now. I don't know all of the ins and outs of myself, and I am tired of the attitude of "well that is the way things are."

I ended up on MEDICARE in my mid-to-late teens. The reason is that I had several other diagnoses to go with my AVM diagnosis and because of all of the medical intrusion into my life and not being able to function properly, I qualified for SSI. It also helped that I had a disabled parental unit.

I loved Medicare. I paid for a supplemental insurance to go with it, but even though my co-pays were higher, I could go anywhere I wanted for treatment within the US. I no longer had some idiot that didn't know my situation telling me that I didn't need it or that there were providers near me that could take care of it. They always think they know better than the patients and their multitude of doctors!

Then I made a "horrible mistake" at age 22 that would change my life forever. I decided to try and at least have a slice of the life I had always envisioned for myself. I got married. I was cut from Medicare and dumped back on Medicaid. My husband is an immigrant. He moved from the UK to be with me. God only knows why. At the time, he had no income. He had put his savings into coming here and being with me. Technically, I was making less than I had been making before, because I had to cover both of us. The only reason we got by is that I had family that wanted to see me happy, and let us stay with them. We thought he would get work with his decent resume, and we were eager to get him back to work, so he could go back to school and get his dream job. He had some hardships that forced college to the backburner, although they were different from mine. He is working now, but everyone is seeing their hours getting cut, even while they are hiring new employees. Suffice it so say, we do not make too much. But then, that is not why I was dropped from Medicare according to their employees. It was for getting married. They said that themselves, multiple times, and I wish I could do something about it, because it sounds SO wrong, especially since one went so far as to say that if I hadn't wanted to lose my Medicare then I shouldn't have gotten married.

I still do not regret my marriage in the least. Everyone deserves someone to love them unconditionally.

On the bright side - I managed to only bleed (from my foot) a little last night and only the top of my sock is stuck to me. Thank goodness for black socks/no blood stains!!

I had the same thing happen at UAMS. I had surgery with Dr. Suen (who is wonderful) for an ear and scalp AVM but as tends to happen with extremity AVMs it came back right away. Then UAMS decided they would no longer accept my out of state Medicaid insurance as they had before for my surgery. So I'd already exhausted any possibility of any qualified AVM doctors in my own state and I can't go back to UAMS so I'm kind of stuck for the time being. This is in no way Dr. Suen's fault. His hands are tied if his hospital won't accept a patient's insurance. But it doesn't seem right, especially when you've been treated there and then they cut you off. I'm sorry for all the pain and turmoil you are going through. My AVM spontaneously hemorrhaged several times before I had surgery and it is terrifying.


My name is Christina and I am new here. I do understand being complicated and I understand how frustrating that is. Just don’t give up because somewhere out there is a doctor who can and will help you.