I’m Hoodyup’s aka Andrew’s wife. He’s posted another thread. I read the responses and comments. Frankly, I am not here to whine and don’t need any online support. Yes, I’m pretty abrasive these days because of this stupid MS and well…I’m just down right pissed at it AND the medical profession and I’m not even PMSing or on steroids. As of today, I’m now moderately pissed at Andrew for going behind my back and calling Stanford. He then goes rummaging through my files looking for the latest MRI CD of my brain to send to them. He means well, but I’ve already given him my opinions of this procedure and because I don't know enough about it and know myself better than anyone on this planet, my opinions are not positive ones. He then tells me they will want to image me there, and per the results and with my consent, throw me into the surgery the next day. He is not open to the realities of this whole thing. He is only looking at the positive results that it could offer. HERE’S A REALITY CHECK FOR YA HONEE! I could stay the same and be worse from the surgery alone. I could get worse still and worsen more from the surgery. Am I going to jump out of bed and bake him a pie if the positive effects happen? Probably not.
It has taken me 5 days to compile this post alone. The reasons why I say that I’m not in need of online support are these. I am tired of crying. Every time I write about it or read about it my eyes get blurry from becoming filled with tears, and I have to stop to get my mind off of it. I can’t see well (optic neuritis and doctor proclaimed legally blind) to read in the first place which makes me tired and trying to do anything with the tear duct flood gates open makes it impossible. I can’t be sent to this and that forum and web site to do research. I’m not able to do much reading. I used to be able to do a lot more. I’m asking for the answers to my questions to be posted on this thread. I hate talking about it. My mother, though she means well, can’t stop bringing it up in emails, visits, or phone conversations. I just don’t want to think about it anymore. I’m that bad off to where being awake wears me out.
I’m extremely skeptical and rightfully so because of what I’ve had to endure over the past 4 years.
Here are some of my questions and concerns.
What are the risks?
I’m not worried about death. I’ve accepted that I’m going to be dead sometime anyway. Everyone dies. That’s just the way it is.
If I do die from this, Andrew will have to live with that.
If I have this procedure, will I be stuck on blood thinners the rest of my life?
What about blockages resulting from inactivity due to MS and not even a cause of MS at all but a result of inactivity.
I need proof. I am not a guinea pig candidate. I am allergic to a lot of things. You name it; I’ll probably get an allergic reaction to it. This is nothing new. I've always had this issue even before diagnosis. The only thing I can handle is 24k gold.
What material is used in these stents? My body will 100% reject any stainless steel or surgical steel. Been down that road before.
How long does it take to fully recover to feel any benefits? I’m not asking for hearsay but for actual personal accounts.
I spoke to the “Lyme literate” doctor/M.D. today that my husband mentioned. He said this prospect is a bad idea for me. Some of the reasons are that the venous insufficiency in my legs is being caused by a malfunction of the neurotransmitter system in my brain. I’ll get those scans. I’ve agreed to that much. He continued to say that it would be extremely stressful for me to have surgery. I get worse when I’m stressed out. A lot worse. Andrew knows about that.
Regarding stent installation--I have experience with the results of installing stents. My grandmother had them put in her neck to prevent strokes. She died of stroke anyway. How long do these stents last?
Until there is substantial proof of this stent thing working for MS patients, and a large percentage of them, I’m going to have to wait and see.
I have not yet found one MS sufferer that has venous insufficiency in the legs and feet. A person who has venous insufficiency in the legs is going to have to go through this stent thing before me. I need to add that I am a 36-year-old female that is 6’1” with a shoe size of 13/12 mens. Will this surgery fix the severe venous insufficiency in my legs? Probably not. The damage has been done according to the words of my general surgeon.
I am an out of the ordinary female that is taller than most women and men for that matter with larger feet that most. I also am an adoptee with no health history of my biological parents and have not gotten in contact with them nor know how to contact them.
I am on Medicare and Anthem Blue Cross supplemental and not Blue Shield. Isn’t Stanford a university hospital? I’ve had my fill of university hospitals. Like I said, I refuse to be a guinea pig/lab rat. Who will be performing the actual surgery? I have come to the point where if you’re gonna try to stick me to find an IV vein, you have one chance. If you screw up, you aren’t touching me again. I’ve gotten boisterous about this same thing with nurses before and will do it again. There will be no one in training touching me or dealing with me. No student nurses or doctors. Trust me. I am a hospital’s worst nightmare.
Andrew wants hope and wants me to do this. I have to see many success stories before I leave the house to go traveling 3 hours to go do this. I am in a wheelchair. Actually, in bed most of the day. I have no calf muscle left in my legs to speak of.
You might say I’m at wits end. Maybe I am, but I’m not desperate enough to go do something that is not 100% proven and is experimental not to mention invasive and most likely will put me in a downward spiral from the surgery alone.
Why do the veins get crumpled and tangled? What is the root problem? Is it a particular gene?
I’m told by an M.D. that stents only last for 5 years. Does anyone know about how long this particular stent operation lasts?
Who does the surgery at Stanford? How do I know who actually is going to be doing the cutting? From my experience with university hospitals, the attending physician may be there, but the resident actually does the work. Anyone have anything to say on that? I do not want and will not tolerate or accept a resident ever touching me again. I want an attending only touching me.
I am asking for anyone to PM me that has or knows someone with venous insufficiency in the legs and feet from the knee to the tips of the toes.
Will an ambulance take me to Stanford with Medicare and Blue Cross paying for it? I tried to go to the lab today to get blood drawn and couldn’t even get into the car thus having to cancel my biannual doctor’s appointment.
Sorry for coming across so pissy. You would be too if you had been through what I’ve been through.
Thanks for your answers.
If I get this surgery done and can walk again without any problems, I'll be gappy to scream it from the top of Oprah's house, but I refuse to jump on her couch.