AVM in L leg with Bone Lesion/Tumor on L Femur ***Update from POTS***

[TheBrownHorse]

I hesitated to make a new post, but I have lots of new information and a LOT of questions so… here it goes!

My last thread (Postural Orthostatic Tachycardia Syndrome…etc.) really got me thinking. Something is VERY wrong and I’m tired of doctors just ignoring it!

I went to the ER three times in less than a week because I just KNEW something was very wrong. I was consistently dismissed, either given pain meds or treated like a drug seeker of someone who just “couldn’t deal with a little discomfort”. I’m seriously not one to go spend my night in the ER because I’m in “a little discomfort”.

On Monday night (really I think it was more like Tuesday morning? at this point, all I know was the date I wrote to sign my admit papers was the 20th haha) I went into the ER with very bad L leg pain. It was so intense, my whole body ached, I couldn’t sleep. I went to not just one ER, but because I was dismissed and felt invisible at the first, and KNEW that something was wrong, went to a SECOND ER that same night. And thank god I did!

At the second ER, What was originally found to be multiple DVTs (blood clots) , is actually superficial blood clots (which I guess is better news what DVTs) with an AVM (where the femoral artery has now merged with the veins) and a bone tumor/lesion on my L femur. The CT Scan with contrast results were incredibly interesting to see! With the femoral artery lighting up so brightly. (If you’re interested to see what it looks like, here’s an example of a near identical pt. though mine has more around the femur bone, it’s a pretty cool visual :

http://radiopaedia.org/cases/arteriovenous-malformation-of-the-thigh )

So, with all that said and done, I’ve got some seriously cadywompus stuff going on in my L leg! Very scary, I’m really actually quite scared, but, they’re answers I didn’t have before.

So how does this relate to POTS? Well, those of you who have POTS have probably figured out a little already, but for those of you who want my theory… The blood is pooling in the L leg. Now, blood pooling with POTS is common, but in my case, it’s literally impossible for the blood to be pumped back up, causing my heart to work about a bazillion times harder. Now, I don’t think that fixing my leg will magically fix all my POTS, but will it help? I’m guessing yes! If surgically they can reconstruct the veins so that all the blood is flowing in the right places, I’m at least guessing that, while I don’t know (because we have no idea what caused my POTS to begin with) if it will cure me of POTS, I think it will at the very LEAST help.

Ok, so, here come questions!

Has anyone had ANYTHING remotely similar? AVM/DVT/Wacky blood flow etc.?

I see my PCP on Friday, I have a DVD of the imaging done in the hospital, but are there questions I need to ask, write down, things for him I need to write down? I always feel so prepared before I go in, and then the appointment goes on and I sit there and nod and then leave and am like WHAT THE HECK JUST HAPPENED?!

I’ll be going to UCSF to see a vascular surgeon probably next week. I’m worried now about a) the surgery in general but of course, more importantly, b) when do I get to at least SEE my horse!? I’ve only been back in the saddle for a month after about six years off, and now this!

Ok, well, I’m feeling slightly encouraged at the same time as frustrated. Oh, the dialectics of life!

Take care everyone!!!

[Zu_Zu]

Sending Jingles & AO for you ~

Admitting no knowledge in this scenario at all ~

Jingles & AO is all I can offer ~ sending a barn full of both !

((hugs))

[AKB]

http://emedicine.medscape.com/article/459842-overview

Do some reading so you can ask questions. Maybe the can block the AVM by using a catheter and injecting it with coils or beads.

[Trinket]

No help at ALL on that one. My suggestion: Google google google (from reputable sites only, obviously!), be informed. TRUST your doctor (ie. If you feel ANY distrust of their: knowledge, ability, bedside manner etc, then DO NOT stay with them. Break up and start dating (doctor dating sucks, but worth it!) again ASAP! ) and bring NOTES! (And if your doc thinks thats weird or odd or your crazy for doing so, refer back to the trust advice!)
I can’t do anything without my notes, there is NO WAY I’ll remember everything I need or want to ask, too much brain fog! I usually still always forget SOMETHING, but what can ya do?!

Jingles jingles jingles!!! Remember, you can’t “Beat” or “cure” chronic illness, but yes, you can certainly hope (want, need and HAVE) it get better!! I’m hoping this improves symptoms of POTS until you can find the cause! :yes:

[TheBrownHorse]

Thank you all

I’ve been reading and researching most of the day (yay for not being able to do anything aside from be in bed!) so I’m about to take notes and then come up with questions

[Ambitious_Kate]

DO you have a personal doctor who is overseeing this issue? For example, I wouldh have thought it would be important for you to be doing alot of walking around and specifically not be in bed, but I don’t know that for sure. Make sure you are following all instructions.

Just so that you know, you are pretty lucky to have been diagnosed in the ER. These days, ERs are set up to make you stable and get you out of there and are not focused on tracking down the source of a problem. That is for you and yhour physicians to do, the job of the ER is to make sure you are stable enough to go home and see your phys for follow up. Of course they will diagnose until they are certain you are stable, or not, and if not, they can follow through with admission or refer you to a hospital which can treat you, but in general they aren’t meant to be a diagnostic treament center, although that’s often what people try to use them for.

With your symptoms you were right to go to the ER, and they well should have followed through until they knew what was happening, for sure, but sometimes ERs just make sure you are ok to go home, and if they think you are, that’s it.

[TheBrownHorse]

[QUOTE=Ambitious Kate;8369284]
DO you have a personal doctor who is overseeing this issue? For example, I wouldh have thought it would be important for you to be doing alot of walking around and specifically not be in bed, but I don’t know that for sure. Make sure you are following all instructions.

Just so that you know, you are pretty lucky to have been diagnosed in the ER. These days, ERs are set up to make you stable and get you out of there and are not focused on tracking down the source of a problem. That is for you and yhour physicians to do, the job of the ER is to make sure you are stable enough to go home and see your phys for follow up. Of course they will diagnose until they are certain you are stable, or not, and if not, they can follow through with admission or refer you to a hospital which can treat you, but in general they aren’t meant to be a diagnostic treament center, although that’s often what people try to use them for.

With your symptoms you were right to go to the ER, and they well should have followed through until they knew what was happening, for sure, but sometimes ERs just make sure you are ok to go home, and if they think you are, that’s it.[/QUOTE]

I VERY much agree with you. ER’s are not the place to go get regular care, or for that matter, a certain diagnosis. Though, when it’s something as OBVIOUS yet silent as what was/is going on, I mean, it’s visible to the eye that there is stuff going on in my leg, with bruising, swelling, and enlarged veins, to look at a pt and tell her to take advil and she’ll be fine is not only disrespectful, but dangerous. While of course you cannot diagnose what I have just by looking at my leg, you can get a pretty clear picture that something isn’t right.

As I couldn’t get in to see my PCP until late next week (they bumped me up because of the ER visit and findings) I had little choice but to go to the ER as the pain was unbearable.

And, as far as I was told, I am to elevate the leg and rest. Today I am going into work for a couple hours, but fortunately, I have the leisure of sitting down/on the ground, or gently moving around.

[TBROCKS]

[QUOTE=Ambitious Kate;8369284]
DO you have a personal doctor who is overseeing this issue? For example, I wouldh have thought it would be important for you to be doing alot of walking around and specifically not be in bed, but I don’t know that for sure. Make sure you are following all instructions.

Just so that you know, you are pretty lucky to have been diagnosed in the ER. These days, ERs are set up to make you stable and get you out of there and are not focused on tracking down the source of a problem. That is for you and yhour physicians to do, the job of the ER is to make sure you are stable enough to go home and see your phys for follow up. Of course they will diagnose until they are certain you are stable, or not, and if not, they can follow through with admission or refer you to a hospital which can treat you, but in general they aren’t meant to be a diagnostic treament center, although that’s often what people try to use them for.

With your symptoms you were right to go to the ER, and they well should have followed through until they knew what was happening, for sure, but sometimes ERs just make sure you are ok to go home, and if they think you are, that’s it.[/QUOTE]

THIS should be posted on every hospital’s ER website.

[Where_sMyWhite]

FWIW… DVT is a Deep Vein Thrombosis (the Vein Thrombosis is the ‘blood clot’).

SVTs are Superficial Vent Thrombosis and are not as risky or health threatening as DVTs (I’ve had both).

My SVT left my calf feeling very painful and hot. Ultrasound confirmed the SVT.

My DTV landed me in the ER via ambulance and CPR …

[arapaloosa_lady]

Are you going to an oncologist, too, if you have a bone tumor? In dogs, a tumor on the femur would frequently be osteosarcoma & mean amputation… no idea if it’s the same in humans.

That’s a shame your primary doc couldn’t fit you in one of their sick patient slots. You shouldn’t have needed to go to repeat ER visits for an urgent problem like this. It’s great that you finally got diagnoses, though, and you can now work towards fixing it!

[TheBrownHorse]

Right… I thought that’s what I said? DVT was originally suspected, turns out it’s superficial blood clotting (which I did not say was SVT, though implied I suppose?), and then the AVM was discovered, where the artery and the vein are merging.

arapaloosa_lady: no, it is not a cancerous tumor. It does need attention, the vascular and orthopedists will have to talk and figure out what to do, as it involves the bone, but also the veins.

[TheBrownHorse]

Right… I thought that’s what I said? DVT was originally suspected, turns out it’s superficial blood clotting (which I did not say was SVT, though implied I suppose?), and then the AVM was discovered, where the artery and the vein are merging.

arapaloosa_lady: no, it is not a cancerous tumor. It does need attention, the vascular and orthopedists will have to talk and figure out what to do, as it involves the bone, but also the veins.

[Judysmom]

No advice on SVT POTS etc but I had a tumor removed from my tibia a little over 2 years ago. It was a weird thing, and thank god not malignant so far as they can tell. It affected my bone marrow, and was ungodly painful. Felt like my leg was exploding.

I was never so grateful to be a Bostonian and live about a mile a way from some of the top doctors in the country. I was treated by and still see and orthopedic oncologist. All he does is bone tumors/ lesions.

All I can say is that I second getting to some sort of a specialist asap. Which sounds like maybe you are in the pipeline for? Best of luck regardless.

[TheBrownHorse]

Hi guys, small update-

Saw my PCP on Friday. He is an amazing doctor, I’m very lucky to have him on my team.

He ordered an MRI with contrast and an x-ray.

We’re going to make sure/look at the structure of things not just the vascular end. So, Monday I get the x-ray and also make an appointment for the MRI for sometime next week.