Surgery Consult for AVM and Tumor in L Femur on Monday

[TheBrownHorse]

Hi all,

I’ve been out of the tack (though occasionally I hop on in hopes that I’m “fine” but I always regret it) due to an AVM (arteriovenus malformation, where the femoral artery merged with pretty much ALL the veins) and bone tumor in my left femur. I have a consult at UCSF Monday with the top Orthopedic Oncologist to see what my options are.

This is the AVM (look at the L thigh, you can see the cluster of the artery and veins). I was told at the hospital the dx me at it was the worst AVM they’d ever seen. This view is the most obvious if you don’t know what you’re looking at. The view looking through the top (like looking through my femur down to my knee) is so frightening, with basically all of it being vascular where the veins have just merged into one, large, awful blood supply, but it’s harder to “know” what you’re looking at unless there’s a doctor there to explain it )

http://i1383.photobucket.com/albums/ah294/theshortbrownhorse/AVM_zpsj9pbet5o.jpg

Thus far, UCLA told me I need a full knee replacement (at 25!) and ablation of some of the veins to reduce the swelling which is pinching on my nerves, and possible radiation. The tumor is so vascular the risks of surgery are very high. Yuck.

I’m SO nervous for this appointment. I haven’t consistently ridden in almost an entire year due to intense pain and swelling. My leg often does this:

http://i1383.photobucket.com/albums/ah294/theshortbrownhorse/swollenknee_zpsjr514cgy.jpg

I’m supposed to be non-weight baring (ended up getting fragmented fractures of my femur because I refused to stay off of it) but still struggle because I want to at least go out to see my horse.

Anyways, on top of all this crap in my leg, I have Postural Orthostatic Tachycardia Syndrome (POTS) and am really struggling keeping my bp up and hr down. I have passed out and whacked my head three times this week. The first time I went to the ER and it took them 4 liters of IV fluids to get my bp sort of normal. I stay very hydrated, eat lots of salt, take my medication… it’s just out of control. So, even though my leg has forced me to not ride, POTS might keep me out longer than I thought.

The deconditioning from my lay up for my leg has led to the direct deterioration of my vitals and ability to function. My hr is often 160+ just by standing up. If I try to walk anywhere it shoots upwards of 190.

I’m also worried how I’m going to handle anesthesia with the POTS. I’ve never gone under before, I’m so terrified.

Anyways, sorry this is so long, I could use some jingles for Monday. I’ve literally found every reason NOT to go to this appointment just because I’m so nervous. My mom can fortunately go with me, which calms me down a great deal, it’s still just really scary stuff to deal with.

Anyone else deal with something similar? Either POTS or a knee injury? Anyone had a full knee replacement, and if so, how was the recovery process?

<3

[Where_sMyWhite]

[QUOTE=TheBrownHorse;8750483]
I’m also worried how I’m going to handle anesthesia with the POTS. I’ve never gone under before, I’m so terrified. [/QUOTE]

Sorry to read of all you are going through. It must be very scary for sure.

I can’t speak to POTS but did want to share my thoughts on your anesthesia concerns. A few years ago I had a series of fairly major surgeries. One followed by 3 in fairly close succession.

My first surgery, I don’t know if the anesthesiologist was one that my surgeon worked with often or not. Usually you (the patient) don’t meet the anesthesiologist until you are in pre-op but you have not been given any meds so you are of “clear” mind. Make absolutely sure the anesthesiologist knows what he/she is dealing with with respect to your health.

My series of 3 surgeries was with the same surgeon and he had a “favorite” anesthesiologist that he worked with. Again, I didn’t really meet the anesthesiologist until pre-op but I believe my surgeon had prepped the anesthesiologist before hand.

If you have concerns about either anesthesia or possibly the anesthesiologist, absolutely talk them over with your surgeon. Talk them over again with your anesthesioloist in pre-op. Don’t be afraid to ask how they are going to induce you or keep you under. Don’t be afraid to ask how they plan on managing your BP. During surgery, you will have a BP cuff on so BP can be monitored constantly along with your other vitals. Yes, it is scary. Yes, there is risk. But, anesthesiologists don’t like loosing their patients

Hope your surgery goes well and others can address your other questions {{}}

[Come_Shine]

Huge jingles and hugs.

[MidlifeCrisis]

I had a very small AVM removed from my finger over 23 years ago. Nothing like yours! However, I just had a total knee replacement done at UCSF last week. I won’t lie. It hurts. But I was on my feet 6 hours after surgery and sent home the next day to heal. The PT exercises hurt like a @@@@@#@%%@# but every day the knee is getting stronger and has more mobility. I wouldn’t worry about the TKR. The orthopedists and the anesthesiologists are there to take good care of you and make sure your pain is managed as best possible. There is a pre-op meeting with the anesthesia department when you get to discuss your medical history and any other concerns you may have and get to have input on the type of anesthesia used. I had a spinal and a block put in next to the femoral nerve. Then I had propofol so I would “sleep” through the operation. I woke up in the OR when they were closing and was lucid from then on. In recovery, nurses checked on me frequently to make sure that my pain was under control. I think you will find this level of care to be standard at all of the big facilities. Good luck and let u know what you find out (if you care to share)

[TheBrownHorse]

Thank you all so much for your kind words, jingles and reassurance!

I just got back from the ER to check out this nasty head ouchy I sustained during my syncope event last night. Swollen, bruised, pain, but nothing broken and no brain bleeds, just some really bad swelling and bruising.

[QUOTE=MidlifeCrisis;8750630]
I had a very small AVM removed from my finger over 23 years ago. Nothing like yours! However, I just had a total knee replacement done at UCSF last week. I won’t lie. It hurts. But I was on my feet 6 hours after surgery and sent home the next day to heal. The PT exercises hurt like a @@@@@#@%%@# but every day the knee is getting stronger and has more mobility. I wouldn’t worry about the TKR. The orthopedists and the anesthesiologists are there to take good care of you and make sure your pain is managed as best possible. There is a pre-op meeting with the anesthesia department when you get to discuss your medical history and any other concerns you may have and get to have input on the type of anesthesia used. I had a spinal and a block put in next to the femoral nerve. Then I had propofol so I would “sleep” through the operation. I woke up in the OR when they were closing and was lucid from then on. In recovery, nurses checked on me frequently to make sure that my pain was under control. I think you will find this level of care to be standard at all of the big facilities. Good luck and let u know what you find out (if you care to share)[/QUOTE]

I will indeed keep you all posted! So glad to hear you had a good experience at UCSF, I think they’re an incredible hospital and have faith in them. Can I ask who your doctor was? I’m seeing Dr. O’Donnell.

[MidlifeCrisis]

I saw Eric Hansen in the arthroplasty group. I’ve also heard good things about Dr. Bini.

[Laurierace]

I am so sorry, no one should have to deal with that but especially not at that age. No experience or advice so all I can offer is prayers.

[Mouse_amp_Bay]

Aww jingles OP! That sounds like an unfortunate combination of health issues but think how much better you will feel once they fix it and you can go back to enjoying your pony!

Good luck, communicate and tell everyone what your concerns are… and then come back to tell us how it all went hunky dory with no issues!

[snowrider]

Good luck tomorrow, I will be thinking of you and hope you get good news.

[csaper58]

Jingles for tomorrow.

Have you made out a list of questions to ask the Dr.

Make a list of the pertinent info you want to give him. I like to zerox all the labels of all my Mom’s meds. I’m can’t spell at all, and I transpose numbers when I’m stressed.

Have Mom bring a notebook and pens so she and you can take lots of notes.

Hang in there, by this time tomorrow you’ll have passed this hurdle.

(((((Hugs)))))

[MidlifeCrisis]

Also, while you’re at UCSF tomorrow, get the info to sign up for their MyChart program. It will probably be at the sign in desk. You will get visit summaries and you can email your doctor through it.

[csaper58]

Good Luck Today!!!

[MidlifeCrisis]

Good luck! Thinking of you!

[Where_sMyWhite]

[QUOTE=csaper58;8751728]
I like to zerox all the labels of all my Mom’s meds. I’m can’t spell at all, and I transpose numbers when I’m stressed.[/QUOTE]

I keep mine all in spreadsheet How do you xerox a round bottle?

TheBrownHorse, please let us know how it went and how you’re feeling about things in general… {{}}

[TheBrownHorse]

Hi everyone!!!

Thank you all SO much for the support! I have GREAT NEWS. The tumor in my femur has actually SHRUNK!!! :eek: And I GOT THE CLEAR TO RIDE MY HORSE AGAIN. Under strict instructions for PT and to take things slowly and at a pace that my pain is manageable, and compression stockings.

However, I have now been referred to Vascular Surgery/ Clinic- I’ll have to go back to Orthopedic next April for a follow up at Mission Bay (to make sure the tumor doesn’t start growing again), and do vascular clinic at Parnasus and Zion. Haha, all over UCSF! The reasoning is this- tumor is WAY too vascular to perform a procedure on. The risks far outweigh the benefits. There would be such substantial bleeding and a high re-occurrence without fixing the vascularity of the issue, that it’s just not worth it.

The vascular surgeon, now, may want to operate or best case scenario vein ablation/sclera therapy, embolization or radiation or SOMETHING that will decrease the massive blood flow to that left femur so the veins no longer protrude and/or swell/ thrombosis and thus, pain relieved slightly or hopefully, all together.

So, no absolute concrete answer, but at least i’m not going to snap in half at any moment which was previously assumed!

Part of me is so frustrated. I just put my life on hold for nearly an entire year (no working, no riding, no anything, as it was suspected my femur would so easily fracture I was not allowed to be weight baring). Now I know that the tumor isn’t going to cause the fracture in my femur as suspected, it’s just, I missed out on so much.

Thing is, I also learned a lot about myself. And a lot about my horse. A lot of bonding with him through grooming and ground work. And that’s irreplaceable.

So now, back to my orthopedic at home for a referral to PT and to follow with the tumor in case it gets worse again, and slowly but surely, get back on board my horse! Of course, I have to figure out this passing out thing, too… can’t be riding when I’m dropping like a fly all the time

I’ll have to seriously rehab my knee as it, obviously (in that one picture where it’s SUPER swollen) has some issues. But i’m hopeful!!!

So yay for a good appointment, and a wonderful day in San Francisco. The weather was absolutely stunning, we stopped at vista point and enjoyed the view, and did a little shopping too!!

[AKB]

Wonderful!

[Where_sMyWhite]

Excellent news!

If you don’t like your PT, keep looking

Don’t risk your health. I love you love riding and it’s helping to keep you “sane” but IMO watch unnecessary risks as well and please keep us posted!

[csaper58]

Wonderful! Glad everything is going well. Enjoy your barn time.

Where’sMyWhite… I gently peel the labels off in one piece, xerox them then put it back on the bottle. Meds she is done with I peel the label off and stick it on a piece of paper.

Originals in my file w/ copy of drivers lis. and ins. cards, copy of the file to all family members Mom visits. Saves so much time when they hand you that clip board.

[Magicboy]

Such good news…take care f yourself and let your horse help you!

[Where_sMyWhite]

[QUOTE=csaper58;8753351]
Originals in my file w/ copy of drivers lis. and ins. cards, copy of the file to all family members Mom visits. Saves so much time when they hand you that clip board.[/QUOTE]

I’m all for saving time… I just put the med name, dose, when I take it in a spreadsheet to print on demand as yes, I know any new Dr is gonna ask for it (and for me, much easier than peeling labels)