Marie's Long Stanford story

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

Marie's Long Stanford story

Postby mrhodes40 » Sat May 23, 2009 11:27 am

I got home friday night at 10 pm after 15 hours of driving, three days after my Tuesday May 19 surgery. I would like to chronicle my experience here.

Previous to asking for assessment at Stanford I had gone to my local university and had gotten dopplers. There was some reflux on the vertebral veins but very mild. However it was enough for me to go to Stanford for more testsing...and the abnormality was enough to get insurance coverage of the more complete testing.

I arrived at Stanford hospital Monday for my MRV at 9:30 am. The MRI department had just had an inservice lecture by Dr Dake on this new paradigm and the staff was excited about this new idea; there was a definite air of expectation and excitement among the MRI techs. I laid on the MRV table for approximately 45 minutes, got double contrast of gadolinium and generally as an experience it was a typical MRI type event. When I stepped out several people were leaning in to the screen in the darkened screen room looking at my results and talking about it animatedly. I got the feeling there might be something on the scan of interest.

I was supposed to get dopplers at 3:30 then see Dr Dake, but at 11:30 Angela called and asked if I could come immediately, which I did. She actually met me at the front door and pushed me with a wheelchair to Dr Dake's office, this was an advantage because the Stanford medical campus is HUGE, confusing, and has multiple hallways centers and sections; it seems to have grown in an unwieldy way with new buildings being added randomly and obscure hallways being fitted in as possible.

note:The map Angela sends you that you print off on your computer is not as clear as a good clear one from the admitting desk--which also has the different floors on the back of it. Get one immediately :wink:

When I arrived at Dr Dake's office he had my MRV on his large flat screen and he looked both excited and bemused, he said "I can't believe it but you have the exact same problem Jeff had. Zamboni doesn't even mention this pattern, but here I am seeing it twice...."
We looked at the MRV and there was the jugulars, both of them, coming down about the size of a little finger, then dwindling to almost nothing, then reappearing again finger sized below the jaw. All around this area was a virtual spider web of other veins which Dr Dake assured me should not be visible on MRV, these other smaller veins ordinarily carry little load, but in my case they were all filled to swollen capacity with the blood that was not getting through the jugulars.

He switched to standard MRI of my neck on which we could see slices of neck anatomy. On this it was clear that the jugs narrow down to a tiny slit at the areas of the greatest occlusion right by the angle of my jaw and the jugulars were 80-90% occluded at that location. We began our discussion of what I would like to do and what he recommended. He reminded me that there is no evidence at this point this would help MS in any way, and told me that he cannot be certain that if he saw thousands of people this would never be seen in "normal" people. I asked if it were his MRV would he do it and he said he would. My primary care doc affirmed over the phone that basic physiology dictates it is sensible to repair such an occlusion. I was all in for repair.

Once we got over the making sure we were clear this is experimental part of the discussion, we had fun talking about the possibilities. Dr Dake is clearly very interested in this new idea and excited to investigate the possibilities, to see more types of blockage, and to see if it helps to treat people.

We then went to the doppler lab as he wanted to make sure we had a complete data set, and he explained to the tech what he wanted then left me to get dopplers.

She was NOT interested in this whole idea which she deemed a waste of time, in fact she declared with absolute conviction that these veins do NOT have valves, therefore cannot reflux and furthermore that blood goes back and forth up and down all the time with every breath, so it is meaningless and inconsequential. She did not know I already had had MRV and knew the results.

I said well I actually have stenoses in both jugulars right above the angle of the jaw...she said NO, because if you did I would see turbulance just below there and I do not. You can't have such a stenosis. I mentioned that at my University they had seen reflux in the vertebrals (which based on my pathology was the overflow from the blocked jugs making excessive amounts of blood in the vv have turbulent flow) and she immediately declared that my vertebrals were completely 100% normal. nothing whatsoever on there unusual.

I then casually asked if the computer does all the calculations, or if there was a lot of guessing/analysis going into the interpretation....She stiffened up and said tightly This takes years of training it is a highly skilled technique...

..which answered my question, she was clearly incapable of seeing a GROSS abnormality in my jugulars with her doppler, but her opinon of her technology and skill gave her terribly inflated confience in her opinion.

I fear for people getting dopplers of this nature. When an MRV shows something so far amiss and dopplers show nothing at all, that is interesting and important information for others.

SURGERY DAY

I did not eat anything after midnight and checked in for surgery at 6 am. I am allergic to iodone dye which was needed for the in surgery venograms so I had been given benedryl 50 mg at 6pm the night before, at bedtime again, and again at 5 am. I also was given 80mg of steroid the same times. I was high..................

.....and my bladder shut down altogether. SO I asked for a catheter, then requested an antibiotic to prevent the infection sure to follow given my bladder, both of which were granted.

I got into the gown and got my IV, then waited a long time for the surgery to start, they had to wait for the cath room to open there was another emergency surgery ahead of us. I didn't get wheeled into the OR until probably 9:30.

They scrubbed my lower abdomen both sides so he could choose the best side for going into the femoral vein. I talked to the anesthesiologist about what anesthesia makes me sick and they changed from fentanyl which many find great but makes me vomit, to dilaudid which I knew was fine for me. SO I had Versed and Dilaudid and was drowsy awake but high during the procedure.

I felt the angio catheter as they inserted it through the veins up to the area they wanted to add the stent. It's not painful just wierd. And it's cool to hear Dr D talk to the student and explain. They did venograms and took pressures across the stenosis to see what the pressure was like pre surgery. They added the stents which hurt briefly as they inserted them then took more measurements. The pressures dropped several points after the stents were in and most importantly the collateral veins, those ones that are not supposed to show up on MRV but which had been carrying the jugular load, shrank back to normal size, barely detectable, while the jugs looked full as they should. This means the path of least resistance is now the jugulars which is as it should be, and my brain is getting good drainage and blood flow. The surgery was deemed a success and I was to go back to recovery.

I was in recovery for some hours and it was determined I needed to stay on heparin and be in the hospital all night. I had blood drawn every few hours to check my heparin levels, and the heparin was adjusted accordingly. My neck was terribly sore and my head ached. I could not sleep at all well with all that neck/head pain, but they woke me up constantly too so it was a lost night anyway.

I went to the hotel the next morning, Wednesday, at 11 and relaxed in bed drinking fluids the whole day. My head and neck were killing me and I could not eat a big bite of anything fat like a hamburger. I needed soft food that could be small bites. We ordered room service chicken pot pie which was perfect... that day I only took 1.5 percocet, half a tab in the am and the whole tab at bedtime, along with tylenol every 4 hours for the headache neck ache.
I had a horrendous bruise where the femoral vein was accessed--the size of my hand and blackish blue and sore. this is a result of the thinner blood, it had leaked into the tissue there after the surgery.

Thursday I watched TV my head felt a little better and I was just on tylenol that day, no percocet. I called my primary care doc and gave her the news, she was excited and we set up a monday appointment to get things going, both INR testing and a good baseline exam.

Friday we drove home, 15 hours in the car. Tylenol ES every 4 hours and lots of water as the stents require good hydration to settle well. I did well and my husband noted with incredulity that I was warm, hands and body. I am ALWAYS freezing in the car it is a family joke that no one can ride with me because I have to run the heat even on the hottest day--until I get hot then I collapse. I have been incapable of regulating my body temperature, and the evidence was constantly ice cold hands. All the way home my husband kept grabbing my hands and saying "incredible...." I was warm no blankets and the widows were open! I hope to be able to report some other things sometime soon that indicate changes are taking place, but for now one thing, small to other people but a big difference to me, feels phenomenal. I also feel alert and awake, my eyes seem bright and skin pink and glowing vs the usual tired greyish look. My husband says t seems like I am back to myself. I do not yet feel any different strength wise or function wise, but with the pain etc I believe that is to be expected.

Today I am up in my own house-yeah! I slept fairly well in my own bed, only woke twice to fuss with my aching head and neck. today my neck is still quite sore, I have to stop trying to type :oops: as that seems to set it off.

The things I want to be sure and share are:
it took me several days after my tuesday surgery to feel like driving or going anywhere. We were grateful for our comfortable room and I would not choose to leave any sooner if I had to do it again.

The sheraton was nice, big clean soft beds and quiet; ask for the different discounts available. If you have a lot of time ask abut the birthday special where they charge full price night one, then your birthday number for the next 2 --example if born in 1960, pay 60 for nights 2 and 3. Also we requested a room change as the disabled rooms on the top floor were such a long walk for me, if you have a chair and distance is not an issue they are nice up there with big bathrooms and a big shower with a chair and handheld faucet, but if walking is hard request a room on the ground floor near the disabled parking, you won't want a long walk when you come back.

I also want to say that this was a bigger deal than I expected; I think stents on the veins lower down are not a very uncomfortable thing at all; heck, wobbly had repairs and was out having drinks two hours later!!.. But I felt pretty terrible; that head ache was like when you sleep on you neck wrong and have a bad crimp and it is kind of there all the time at first no matter what... But not every one will have THAT surgery.

Apparently it seems getting stents in that particular location just under the jaw is pretty prone to exactly what I experienced, based on Jeff's experience and Dr Z's comment that dual jugulars results in bad headaches (though Z does not use stents himself--just repairs).

My personal feeling about this is positive so far the discomfort is present but manageable with rest and I keep coming back to the physiology of the situation, I would not leave the blockages that I had there as they were. It just can't be OK from a physiology point of view; if such a blockage were in the kidney vein it would show up in damage; why would we assume the brain somehow is more tolerant of such assault? I can't believe that it would be, and even if this is not the MS "cause"--though I suspect it probably is-- it is not reasonable in my mind to expect an MS brain to cope with this in addition to "MS".

Then there's my husband's POV; He says hey, the fact is that you don't know anything about MS...never heard of it. Turns out what you have is CCSVI. Maybe some other people have MS, they can take whatever they want to for that, but YOU had CCSVI.....good thing we found Dr Dake ........... :wink:

I hope I shared everything I'll probably add something later. I gotta put my head/neck somewhere else for a while :roll:

later, I've added a nother bit...
Last edited by mrhodes40 on Sat May 23, 2009 1:43 pm, edited 2 times in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby whyRwehere » Sat May 23, 2009 12:49 pm

This is totally what we want to hear about...and the doppler lady, I'll have to be prepared for that. Hope you get better soon...my friend who is into the sedona method would say, "can you welcome the pain?" I couldn't, actually!
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Postby mrhodes40 » Sat May 23, 2009 1:22 pm

WHy,
thanks! it almost seems dark and clinical in re reading: I was trying to be concise but accurate and complete! I am glad I had it I keep thinking how glad I am to know my body has been given the boost it needed there to help it function the way it was intended to.

I couldn't believe the sonographer either. It was so different from the MRI group, who were all excited about what they saw on my MRV, nodding at me and smiling as I left as if to congratulate me on the findings... that's why I mentioned those both in detail it shows the opposing sides that we will see in people who hear about this. By the way, Dr Simka in his paper mentions that people with high jugular blockage will not show on doppler, so this one person was a little over confident of her findings, well, obviously considering the MRV. No medical practitioner in his right mind would throw out MRV results for doppler findings!! :lol: The reliablility is the other way around.......MRVs better than doppler

I needed help! My jugs were almost completely blocked and it's just how I was born.

But let's think about this: In my case it is not the azygos as Zamboni often sees and which can result in spinal lesions because that vein is attached to those spinal venous drainage areas.

My jugulars were the plugged thing and high up. as a result only the actual head venous drainage was actually impacted.

Guess what? I have not one single spinal lesion, never have had. like Jeff I have no lesions below the level of the venous blockage.
Last edited by mrhodes40 on Sat May 23, 2009 1:52 pm, edited 1 time in total.
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby whyRwehere » Sat May 23, 2009 1:47 pm

So, I am thinking my husband would be more likely to have blockage further down, as he has (or had, hasn't had an MRI since 2002) plaques on the spine and not many in the brain (although this has probably changed).
Does that mean the doppler might actually pick something up? If it did, it would mean less fighting to have more done...
By the way, my husband often claims he has stiffness in his head on waking, as opposed to a headache. I can't know what that feels like.
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Postby cheerleader » Sat May 23, 2009 1:50 pm

I said well I actually have stenoses in both jugulars right above the angle of the jaw...she said NO, because if you did I would see turbulance just below there and I do not. You can't have such a stenosis. I mentioned that at my University they had seen reflux in the vertebrals (which based on my pathology was the overflow from the blocked jugs making excessive amounts of blood in the vv have turbulent flow) and she immediately declared that my vertebrals were completely 100% normal. nothing whatsoever on there unusual.
I then casually asked if the computer does all the calculations, or if there was a lot of guessing/analysis going into the interpretation....She stiffened up and said tightly This takes years of training it is a highly skilled technique...
..which answered my question, she was clearly incapable of seeing a GROSS abnormality in my jugulars with her doppler, but her opinon of her technology and skill gave her terribly inflated confience in her opinion.


Marie...thank you for addressing this. We also received a "clear" reflux report on the dopplers for Jeff, and Dr. Dake said there was much more going on up above the stenosis which was missed, because the transducer couldn't reach the area. Jeff also had swollen collateral veins that were trying to take the blood, and they went away once the jugs were open. Perhaps a transcranial doppler would have caught the reflux going into the skull....but you're right, the MRV is the final word.

Dr. Schelling's observation (at autopsy) was that the veins leaving the base of the brain in MS patients were swollen and distended. That could have been the far away future story for you and Jeff, had your jugular issues not been addressed with stents.
Schelling:
Skull radiographs of supposed victims of multiple sclerosis, showing striking widenings of the main venous passageways out of (and into) the cranium first stirred the present author's particular interest in the diverse anatomical pathological specifications of multiple sclerosis


The doppler transducer just can't see the veins leaving the cranium, or what's going on up above. But this won't be everyone...just a "coincidence" it was our first two :)

Another interesting tidbit...Jeff's lesions were the Steiner's splashes pattern, and Marie's were the Dawson's fingers...both noted by Schelling as related to venous reflux.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sat May 23, 2009 2:55 pm

damage will be connected to slowed perfusion in the brain and spine, hypoxia, and collateral vein leakage, not simply reflux

I agree completely.

I like the Schelling quote too. This is the point; there is verfiable factual material supporting this idea, ie Jeffs and my MRV and numerous autopsy reports from the beginning of neurology showing venous abnormalities, it is not just a theory.
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Postby patientx » Sat May 23, 2009 5:57 pm

Marie,

Thanks for relating your experience and the continuing updates. I also appreciate your measured cautious tone in some of your other posts.

One thing I find interesting in your story: how the doppler tech thought the whole idea had no merit. I was thinking it's strange the doppler lab would still perform these scans. But maybe it's the case they just do what the doctor orders.
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Postby mrhodes40 » Sat May 23, 2009 7:44 pm

Thanks PX. I make an effort to be real I think sometimes we talk about it as if it is like getting a hair cut, (me too sometimes :oops: ) and that does a disservice to everyone.

Especially Dr Dake......... He needs us to understand it well enough to make an informed decision. Informed means all the bad stuff too......

But maybe it's the case they just do what the doctor orders.
Absolutely they do. They really have no right to question it or to make such judgements because they do not have the background to do so: they don't know what other tests have been done (like her ignorance of my MRV), what the patient is all about otherwise and what diagnosis is related so they only have a tiny piece of the picture and not enough to judge. The patient care system has a proscribed hierarchy and doctors with their 15 years of med school are on the top, not a doppler tech with her 4 years even in "her field".

Another thing to note is that the dopplers I had locally had a different finding so who do we pick as correct? the group whose findings reflected the problem (my university) or the girl who says it is entirely normal when the MRV clearly shows something is wrong?

Nurses have very carefully proscribed areas where they are permitted to advise and where not to, you cannot "practice medicine without a license" which means to diagnose without being a doctor or a practitioner. That is one reason I try to be careful and cautious, I want people to check with their doctor and not lean on me, ever. But I am happy to give information that might help someone be a more assertive patient or be informed enough to ask the right questions. :wink:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby CureOrBust » Sat May 23, 2009 8:30 pm

Your telling was faultless to me, although you're tendencies for substance abuse have now been elucidated. :P

I am a BIG baby when it comes to pain, and would personally prefer to be knocked out for an OP. The one OP I have had (small lip OP), the dr I ended up with used a local (my original dr was planning to put me under). While he was operating, I almost started to laugh (sick sense of humour), which I realised would not be beneficial during oral surgery... Was there any specific reason you (and Jeff) were kept conscious?

Marie,truly, thank-you, and all the hope this not only fixes the vascular issue that was seen.
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Postby mrhodes40 » Sun May 24, 2009 7:14 am

tendencies for substance abuse have now been elucidated.
Well then if you get treatment we'll just see how you do :P

thanks for the positive feedback Cure!

You have to be awake. You have a role, you have to breathe for the venograms and hold when they say or they can't know how it is working.

I also "offered" the information when the stents were being inserted tha they were touching my ear inside, I do not know if that was useful to them but I was glad to share it :lol: I was pretty high and comfortable it did not bother me...I was fascinated. And there was no wake up phase--I hate that about being "out" . I am used to hospitals though, I do not know if other people would feel the same or not--heck I was ready to hold the instruments if it would help :lol:
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby coach » Sun May 24, 2009 8:45 pm

Thanks so much Marie for sharing your experience at Stanford as well as Jeff sharing his. This whole CCSVI info has been very intriguing. I appreciate everyone that has researched it and offered their insight and analysis. I think perhaps some of us here and Drs. Zamboni and others may have a new view of just what may be going on in MS. Certainly worth further study. I understand the surgery for stent placement is not to be undertaken lightly and has it own share of risks, but also perhaps has much more to offer than current recommended therapies which have seeming little to offer. I liked Marie's husband comment about her having CCSVI. For those of us that have been somewhat following this on the fringe ( and I am one of those), is there a Reader's Digest condensed version to point one in the right direction so far as pursuing such testing and surgical intervention if indicated by tests results. Admittedly I haven't followed this as closely as I would have liked. I need a step by step plan of action that perhaps some have used. I live in a rural area of the state which limits one's access to certain medical testing without a drive being involved.
In my case I have tried LDN, abx with little change. Wanting to try something else this may be the something else. Have had MS for 25 years.
Am SPMS with worsening balance and walking issues. Would at least like to make an attempt to slow progression. Marie mentioned that her hands are no longer ice-cold after the stent surgery. Do others suffer from cold hands and feet? I do suffer from cold hands even in warm weather.
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Postby peekaboo » Mon May 25, 2009 6:30 am

Coach wrote:

Do others suffer from cold hands and feet? I do suffer from cold hands even in warm weather.


In the last few years I suffer from cold hand and feet..feet esp. i attributed this to lack of exercise (circulation)...now that may not be the total reason.

Marie - I have incontinence and wear adult pull ups :roll: do I wear them under my gown? I know not eating or drinking before the OP will help the leakage issue but....

I also re-read the simka dawons fingers graphic and text and they say this is a jugular issue..

I wonder what Lhermittes might relate to.
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Postby cheerleader » Mon May 25, 2009 7:43 am

coach wrote: For those of us that have been somewhat following this on the fringe ( and I am one of those), is there a Reader's Digest condensed version to point one in the right direction so far as pursuing such testing and surgical intervention if indicated by tests results. Admittedly I haven't followed this as closely as I would have liked. I need a step by step plan of action that perhaps some have used. I live in a rural area of the state which limits one's access to certain medical testing without a drive being involved.


Welcome, coach. Glad you've been following the info, but if you want to learn more, you'll have to get in the game. Go to the sticky Marie posted at the top of the thread and read every link, take notes, use the glossary, learn how to speak CCSVI. The most important paper to comprehend in the Zamboni study of Dec. 2008 in which he finds CCSVI in all 65 MS patients he tests. Like Zamboni, we are seeing stenosis of the jugular and azygos veins in every MS patient tested, all over the world. There are no cliff notes for this, because it's very important that you understand it, so that you can explain it and discuss it with your doctors. If you're in a rural area, you'll need to travel to a larger city/university to be tested with an MRV or venography to see if you have this. This is a new paradigm for MS, and patients and their loved ones are going to be responsible for explaining it to the medical community. Believe me, I'm not a doctor, but I needed to be able to discuss this with alot of them...and that took hours of study. This is your life, your body. Suit up, coach! We're glad you're here.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Mon May 25, 2009 11:32 am

Man, this is all very cool. I wish I was going tomorrow. I just got back from camping. I did OK, but was pretty harshly heat affected, and will be going again for the 4th! I'm a glutton for punishment I guess, but shortly thereafter, I'll be gearing up to go. I didn't have a good weekend physically and I couldn't wait to get back here and read your update Marie. I'd been doing pretty well recently, but had not spent 48 hours continuously outside when it's hot. I absolutely hate having the energy to do something but having legs that don't want to carry me to do it. I simply can't wait to see what they see. With most of my disease activity in the spine, maybe I'll be the first to report azygous stenting. Remember they even had me dx'd Devic's for about 5 years. So since I have spinal and brain lesions, should I expect jug and azy involvement do you think? Just curious what your thoughts are.

Thanks Marie for such a good itinerary of events for us to follow. Knowing somewhat about what to expect will surely help; especially the part about this not just being "outpatient" but a little more major.
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Postby whyRwehere » Mon May 25, 2009 11:59 am

Marie,
Is your headache/pain better?
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