Looking for answers to questions re the surgery

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Looking for answers to questions re the surgery

Postby Boopieup » Mon Sep 21, 2009 7:28 pm

Hi All,
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.
Sharon

P.S.
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.




:lol:
DX w/ RRMS 2004. Self DX PPMS. I don't sit here feeling sorry for myself; I just sit here. View my Blog--history and current events in my life at
http://boopieupsmsjourney.blogspot.com/
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Postby cheerleader » Mon Sep 21, 2009 8:24 pm

Hey Boopie...
Welcome. You've been thru it all, and I'm so sorry that your MS has been so absolutely horrible and impacted your life so deeply. It sounds to me like you really don't want to get into this, and that's OK- If you're looking for "permission" to not consider CCSVI, I don't think you need it. It's your body. You make the call. Truly. I can understand why you'd be sick and tired of people trying to fix you. But I also can tell your husband loves you alot...and I understand his wanting to hope and help you. Believe me, I get it.

No promises here. The docs in Italy have had some luck with progressive patients in reversing disease course after 18 months out from the endovascular procedure- I met some of them in Italy. They are happy to be up and walking...not tap dancing- using canes and walkers, but up and feeling better. The Italian research comes out next month in the Vascular Surgery Journal. We'll post it here. The US folks are all new...my husband is the furthest along at 4 months post op. He really wanted to do the surgery, and is glad he did.

I hope that you have something that gives you joy...even thru all the trials...your sense of humor and spunk come thru in your writing. I know some of the MS folks on here will PM you- but I just wanted to say welcome- keep writing to us,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Mon Sep 21, 2009 8:25 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:37 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby mrhodes40 » Tue Sep 22, 2009 9:20 am

Hi,
I get not needing support, and I get being done with all things MS. There is a real difference between people who get treatment while still pretty functional and people who are really disabled. There is a real difference between us mentally too. Early MSers retain a lot of hope, later MSers live in a different reality where bad things have happened over and over. I am cane or walker dependent.

I feel a little better but nothing dramatic, no you won't be baking pies. This is experimental. There are no promises, and although Dr Dake is very keen on stents the European docs seems less so and no one here at TIMS can know who is right.

It could be that replacing stents that high will be a real problem if that becomes necessary. Since the first jug venous stent recipient was 4 months ago, that is hardly a track record to assure anyone. It may be that no one needs a new stent--or that many of us proportionally do.

One thing I do know: stents like lots of water in the system and exercise to keep them open. If that is impossible for a person, the stents are not in the best situation. No one is saying that only active people can get them, but it is possible someday that is what will be known. We are guinea pigs and there are no promises at all....there is no way around that.

It is obvious your husband loves you and wants some help for your suffering. I am sorry this road has been so hard for you both.
marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby chrishasms » Tue Sep 22, 2009 10:29 am

123
Last edited by chrishasms on Sat Dec 05, 2009 6:16 pm, edited 1 time in total.
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Postby Jamie » Tue Sep 22, 2009 12:40 pm

If your criteria is 100% proven efficacy then your search will be futile.

That does not exist and people who tell you it does are liars.

This is new, if you feel you have time - wait it out to see where it leads.

No one is going to twist any arms or 'sell' this to you here.

My wife was a lot earlier in her MS and it has helped her enormously. That's all I can tell you really.

Good luck! Don't be too mad at your other half, I've been there - got the tongue lashing from Mel. She's been through high dose chemo as well - her ride hasn't been too easy but she's winning now and that's what counts.

Dr. Dake by the way is not some intern and only he does the ops - its extremely technical and he is an extremely well published and renowned doctor that a google search will back up, so that's one less worry.

Anyway good luck with whatever you decide, the disease is dreadful for all concerned.
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Postby lyndacarol » Tue Sep 22, 2009 5:42 pm

Sharon -- You are absolutely entitled to your opinions! Far too often people with disabilities are not given credit for understanding their situation or for holding perfectly valid thoughts and opinions. Although Andrew desperately wants to help you, he must learn to communicate with you and accept your decision as the final word on a plan of action concerning you.

There is acceptance at this website for every person with any attitude -- we have all run through the gamut and probably experienced every one of them. This is a place to share your feelings, express your fears, pose your questions, and develop your own ideas about this awful disease.

Not everyone here believes that MS is an "autoimmune" disease; not everyone here is taking a disease modifying drug; we represent many lines of thought (My own hypothesis is that excess insulin has a fundamental role in this disease.) -- we invite you to join us; your contributions to the ThisIsMS forums will be important to all of us (We learn from each other.). We are happy to accept you on your terms -- whether you actively participate or just read quietly in the background.

Many of us are optimistic; I personally think that this site will be one of the first to announce the answer to MS when it is found. Stay tuned.
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and another thing...

Postby Boopieup » Tue Sep 22, 2009 11:03 pm

Thank you for all your informative and wise words.

I forgot to add this gem of information in the first post.

I do need to add that not all is lost in the Hoodyup and Boopieup household. Even though I’m in a wheelchair and my MS has progressed, there is still one thing that I (we) have. It has not only stayed the same but has gotten a lot better over the last four years. That would be sex. Andrew is following right along happily even though he is 8 years older than I am. He stays in shape or I’d kill him he says.

I still have my old personality according to my Andrew. I think I’m a little more pissed off though.

As far as exercise goes, sex is the only exercise I get. Sorry for the TMI. I do “exercise” 4 times per week on average. Sometimes 5 days. Andrew says this is now definitely TMI. Hey, at least I still have that and a willing husband.

The Boopieup jury is still out on this surgical procedure. I still am going to have the tests done--maybe in the middle of the winter when it’s cooler. Does anyone know of a good place to stay in Palo Alto or close to the university for Andrew (and maybe me)? Furthermore, we might want to go to the coast too for a few days. Anyone know of a coastal place nearby? All the places have to be wheelchair accessible and disabled friendly.

I’ve looked at a map and the roads look pretty curvy between the university and the coast. We have traveled on hwy 92 once or twice. That wasn’t too bad. Any lodging suggestions?

I figured if I’m feeling that good after the surgery that a trip to the coast would be well deserved. I dope up on ativan any time I get in a car anyway.

A bit more about my situation:

All the medication I am taking daily is LDN 3mg which helps the leg pain tremendously.

I have very good arm strength which helps me get from bed to office chair to wheelchair. I get extremely weak when my feet are on the floor too long, I'm over heated, or stressed.

In the past, I was an avid horse woman. From the age of 10 until 2002 I was a ridin' fool. I put my last horse down (she was 33) in May 2008 and then we moved to a ranch an hour away. Trust me. We're planning for another 2 horses and some goats. I ain't dead yet, so no one can tell me no when it comes to horses. I have a new powerchair with leg lifts. The chair, me, and a horse--take that MS!

This ranch has well water. I've been drinking well water for a year and have been deteriorating ever since. Today Andrew bought bottled distilled water. I noticed it is lighter and much easier to drink. I'm going to call our "well guy" and ask him to get a sample analyzed for all minerals.

I can't be the only one in a wheelchair with MS or the only one with severe venous insufficiency in the legs. I do know this much. Having a positive attitude or the attitude of f^*% the MS and the donkey/ass it rode in on (nothing against donkeys) or a fighting attitude seems to be keeping me from falling into depression. Sure, just about every practitioner I've seen has wanted to throw antidepressant drugs at me. They are great for some people and very beneficial but they are not for me. Why do I think that way? I am hypersensitive to medications. If there is a negative side effect, I'll get them all to the max. I'd rather, if I end up on the floor, worry about incontinence than not be worried about it at all. I even went so far to tell the last resident doctor at the last university hospital where she could put them--where the sun don't shine. This is very tame compared to what I really said to her. All I was doing was a lot of crying. I was on IV steroids. What did they expect?

As you may have noticed, I have a lot to say and a lot of pissed offness in me. I think that's one of the reasons why Andrew married me--at least I hope so 'cause that's what he's stuck with.

I'm over being moderately pissed off at Andrew. I got over it pretty quick. Exercise does wonders! I'm understanding of his situation. It has taken him 11 years to be understanding of mine. The last 4 years have really whipped him around and not by anyone's choice. I tell him often how lucky I am to have him and how screwed I'd be without him. He knows I love him even if sometimes I tell him what for.

So that's what's up I guess. I thought about keeping a journal. Why bother? I don't have the brain cells for that even though they say it's therapeutic. I've found that listening to audio books is more therapeutic than anything. Exercise = therapeutic too.:wink:

Wow. This surprises me. This long post in one night. I'm tired now. Good night all.

Sharon
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Postby whyRwehere » Tue Sep 22, 2009 11:38 pm

Well, I suspect you're just a girl who can't say no, so good luck on your journey.
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Postby Brainteaser » Wed Sep 23, 2009 12:49 am

Hi Sharon,

Sounds like the most therapeutic thing you're doing is getting all that stuff out on the table. Maybe you need to keep doing it.

Within reason, of course :wink:

Phil
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Postby mormiles » Wed Sep 23, 2009 7:47 am

Dear Hoodyup,

While you are learning about CCSVI treatment, please wear Andrew’s shoes.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mrhodes40 » Wed Sep 23, 2009 9:22 am

Yeah for exercise !!! :D :D 8)

I want to add information that will lend more clarity to my earlier post which is relatively negative in response to your request for assurance that this is safe and that it will help:

I hear you on the side effects issue-that is me too. I've had MS since 91, a few years before any drugs came out. My neuro was eye rolling me about my issues with everything he prescribed: oh wasn't he just the smart one with his baclofen and his prozac and his stuff. These always, everything, either kept me awake for days on end or left me in a morass of fog. So I'd try one pill then throw th rest, eventually I refused everything.

He took his revenge when Avonex came out. He would not prescribe it for me--now, realize this was the very first MS drug and we were all so excited to have it. He said, with a smug smile "Well you'd never tolerate it, the side effects of flu like symptoms would bother you". Maybe so, but he had NO RIGHT. I left soon after that.

I did the surgery; the reason is last autumn I had a terrible fall and overnight went from challenged with a cane to dependent for everything. I realized that my MS was going to--not might, not could, GOING TO--get really bad. Like folks who live in nursing homes, only it wasn't going to be folks, it was going to be me. I gave in to the idea that I had not dodged the "MS getting bad" bullet. Then this CCSVI deal came along and I realized the implications . I was afraid to hope, afraid my hopes would be for naught, afraid of not succeeding again. But I decided that FOR ME, I was going to give this a try even though it is experimental. because I do not have anything left to lose really. there is freedom in that.

These are the complications I had: the first is not that common the place where they pulled out the femoral catheter (not a bladder catheter, the one in the veins) did not seal up well and it bled. Because of the coumadin it bled a lot, right into the stomach muscles which caused terrible stomach pain. Because I have spasms and they get my stomach too, it would start to heal, them WHAM! spasms would pull it open again. 5 weeks after the surgery that finally was getting better, but I had a black and blue belly that long. I had to figure out that a lot of antispasm med was needed (I hate baclofen it makes me weak) to keep that quiet until it healed.

That was complication one.

I was person #2 so I had very large stents. Dr Dake thought he needed big as better. Turns out that can pinch the accessory nerve. Mine got hurt. It is expected to get better, but it causes shoulder pain and headache. at 4 months my nerve is recovering ( EMG last Monday-it is healing) and the pain is better...Dr D uses smaller stents now and an "gentle" insertion not a "hard" insertion.

that was complication 2.

I have spasms and was sitting in a chair when one hit and my leg pulled up whacking my calf in the chair rail underneath HARD. It broke the vein near the surface which bled under the skin and turned my whole calf black and blue because of the coumadin. Then it got a blood clot in it as it tried to heal. I had to lay around with my leg up. Byt his time I had spent 5 weeks on bedrest for the belly bleed and now here came more weeks.

that was complication 3.

I am really glad to be on the other side of this. I have to say I had irrational exuberance before surgery...hey I was person #2, we did not know what to expect! I sort of secretly (very secretly deeply buried)hoped I'd be like the magic one person who would just start walking again. I rationalized it had not been that long since I did walk, even though I logically knew that was unreasonable I hung on to MAYBE.....it COULD happen.....

And of course it did not happen that I suddenly started walking well. I use the same equipment I did before. I have more stamina, I sleep better, I feel bright and awake, but also weak and like I have MS. If I go to the mall I still struggle. My great hope is that I do not progress, that would be a blessing. But at this point 4 months out my life has not changed much at all...except I am glad to be off coumadin!

For me in my situation, I figured I'm already screwed. The "cure" did not get here in time for me, so to speak and a normal life is not in my cards. At least if I do this I am doing what I pick and what makes sense to me. If it turns out there is some kind of bad problem from it, well, I accept that this is new and something like that COULD happen. I also feel that if learning can happen from me that can only benefit other people with MS maybe even someone from my family (like my kids).

The first people to get open heart surgery didn't know what was going to happen either....

When you posted a request for assurance I felt you needed to have feedback that is real: this is uncharted waters, and it is not magic especially for the more progressed person... Only you can decide if the not-yet-proven hope of no progression is worth this uncertainty

I am glad you are here and that you are considering getting the scans so you can see what is going on there. At least then you can think about it. For me seeing my crushed jugulars was very convincing that this was something that I personally wanted to be repaired.

We did get an ellipse for regular, by myself, exercise, I do it 2 times a day. It does seems helpful. the bedrest weeks were probably not good for the stents.

ps horse and goats is a good combo, you do goat cheese? I grew up on a cattle farm in south Washington state; small-only 200 acres and 120 head we traded beef for raw milk from the dairy guy "next door".
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby LR1234 » Wed Sep 23, 2009 9:45 am

Marie, do you feel your downward slope towards the MS getting bad has stopped? or do you feel you are still progressing?
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one step at a time

Postby hoodyup » Wed Sep 23, 2009 9:54 am

Hey, all. These latest postings of Boopie have been the most she has had to say about life and her situation for a couple of years. I know it hurts for her to talk about it, so therefore she may come off as abrasive or like she just doesn't give a crap. Actually she is the nicest person you could hope to meet. So nice that she keeps a lot of this stuff inside so she won't hurt others. I told her, let it fly. It's the internet. Say whatever you want, these people will understand if anyone does. I'm very proud of her for opening herself up to you all. It is theraputic. I admit and confess to calling emailing and calling Dr. Dake's office. Guilty. It seems we are both at our wits end. But when she couldn't make it to her appointment to get blood drawn locally because it was too hot at 8am, I just felt like we have got to do something before this gets any worse. If my wife is only moderately pissed at me then I can live with that. She gets moderately pissed at me on a daily basis, so as long as we are finally going to try (again) to do something to fight this MS, then I can take the heat. She is a fighter and can be very strong when she needs to be. I don't think she is scared, I think she just doesn't want to have her hopes up and then get disappointed. I am not pushing her to do it. I just wanted her to get the scans done so she will know what is going on with her and she can decide to proceed or not. I am just so amazed at this whole thing, it's just so new and I only stumbled on it by accident. Actually I was looking for a caregiver support group, but hey, this is way more than that. You guys are brave pioneers and I truly admire you all. I doubt I would last a day in any of your shoes, let alone Sharon's (they are WAY too big). Thanks for your responses, they are enlightening. Andrew

And as for her "exercise" program, I'm not complaining. What's good for the goose is good for Hoodyup.
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Postby Loobie » Wed Sep 23, 2009 10:17 am

I can relate to her fears big time. Now I didn't have all the different things that got my hope up, and then dashed, that added up. I had one thing; Tovaxin. I thought it was going to be the magic bullet and it didn't do shit for me. Probably because I have tripped over into SP. Marie's post is the best information you will get on here. My spinal accessory nerve is also pinched. So much so that my shoulder is, and has been for about 8 weeks now, out of socket. It looks like I have two 3" diameter rocks under my skin and is starting to hurt. But I'm hopeful. You can read my blog (link at bottom of page), but I won't even allow myself to get my hopes too far up. But like her, I also feel different and "clearer" and have more energy. You know it falls into WTF territory because you aren't going to have drug like side effects. I also hate drugs (except pot) and they all have massive side effects on me also. So check it out. Dake won't give you any "we'll get you fixed up", or tell you anything about expected results. That's the beauty of him. He doesn't know and doesn't pretend to know.

Well good luck and keep up your exercise regimen :D
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