Marie's Stents CCSVI

Tell us what you are using to treat your MS-- and how you are doing.

Marie's Stents CCSVI

Postby mrhodes40 » Tue May 26, 2009 3:51 pm

I m going to copy and paste my long stanford story into this hread so I can have a place to journel recovery stuff related to my stent placement.

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

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 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 ...........

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 mrhodes40 » Tue May 26, 2009 3:56 pm

Monday May 25, 6 days after surgery I went in to see my local PCP and get a follow up visit.

We drew my blood for coagulation and discovered I am not thin enough so the coumadin is going to be increased and we repeat the test already Friday...and at least weekly thereafter. My doc is not down with the every two week checking every week for her to feel like we are being safe .

Coumadin is a big drug. YOU don't take a lot of other things with it, you must check every time before you consider any kind of other drug, supplement or even FOOD!!. It is a big medical management drug you need a lot of help.

ALso I had a complication in that some blood leaked into my abdominal muscles after surgery because my blood was thin and now I have a very painful tummy. I have to rest it and treat it right to resolve right now I am allowed limited up time mostly bed rest with hot washcloths on it periodically ..not a heating pad as that would be too much heat with the coumadin. We might get some bleeding going again that would be bad news and not what we want...

Ok off to rest again I will add some positive feeling better type stuff next post...
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby CureOrBust » Wed May 27, 2009 12:43 am

The following have been extracted from some of your other posts.
mrhodes40 wrote: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

mrhodes40 wrote:On my MRV which has the picture from dead on front, my jugs were flattened so that in the front the looked the normal thickness, but Dr Dake knew to have them digitally "turn" my picture 20 degrees and BANG! there it was the thinned area.

We could see on the neck MRI too that the jugs were mere slits flattened to the back at the angle of the jaw rather than fulll round veins. SO they did slices of my neck in the regular MRI same time as MRV and that let us know that the jugs needed that rotation to see the anomaly...
My question is, was both the above analysis performed DURING the actual MRV, or was it done post the MRV using the digital images obtained during the MRV?
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Postby mrhodes40 » Wed May 27, 2009 6:30 pm

The MRI and MRV were done at the same time while I was in the tube--the digital turining was done by a technicican of some kind afterwards at Dr D's direction...it took them some time to do that and resulted in a huge digital file.

I had a uncommon complication in that my femoral vein access leaked and is painful now because blood went into the abdominal muscle. I have felxor spasms where my legs pull up uncontrollably and my stomach tightens down very strongly. I believe this is why I am having such a time with healing up that area and recommend you talk to your doctor about it if you too have flexor spasms and do whatever you need to do to make sure that you are controlled there so the area can be relaxed and heal nicely.

I feel pretty good in my head/neck I still have some headache neck ache but it gets better all the time. I am taking tylenol still. I keep heating a kitchen towel in the micro and tossing it on the lower neck "ROcky" style and that helps the muscles relax. Dr D is not quite sure why this is true for Jeff and I after these stents were placed, he speculated perhaps the collateral circulation changes are in play there (ie the VV's are not engorged now and somehow that difference is making the trapezius uncomfortable) My regular doc said "don't expect to know how you'll be until 6 weeks it takes the body some time to recover from the shock of any kind of surgery." She is following me closely and monitoring the situation.

not much else to report I am still in recovery mode here 8 days after surgery, the abdminal thing is limiting me.
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Loobie » Wed May 27, 2009 7:05 pm

Hang in there baby. As Wobbly would say "stay strong?" :lol: You'll be feeling better about the same time I go in, so you can give me a pep talk!
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Postby cheerleader » Wed May 27, 2009 7:06 pm

Marie...are you taking baclofen or anything to relax your abdominals while you heal? I'm SO sorry you had this complication...and you are a champ for sharing your whole experience with everyone. Better days ahead...keep healing!

I wonder if the stent is putting pressure on the accessory nerve? Jeff notices that certain positions really inflame the shoulder area, and if he avoids them, his shoulder is fine.

Accessory nerve: The eleventh cranial nerve, which emerges from the skull and receives an additional (accessory) root from the upper part of the spinal cord. It supplies the sternocleidomastoid and trapezius muscles. The sternocleidomastoid muscle is in the front of the neck and turns the head. The trapezius muscle moves the scapula (the wingbone), turns the face to the opposite side, and helps pull the head back. The accessory nerve is so-called because, although it arises in the brain, it receives an additional (accessory) root from the upper part of the spinal cord.

Damage to the accessory nerve can be isolated (confined to the accessory nerve) or it may also involve the ninth and tenth cranial nerves which exit through the same opening (foramen) from the skull . Accessory neuropathy (nerve disease) can sometimes occur and recur for unknown reasons. Most patients recover.


Maybe once the inflammation is down it won't get so bothered?
Wow, you guys are really the guinea pigs, huh???
xox,
Joanie
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureOrBust » Wed May 27, 2009 7:06 pm

That is good to know about the MRV/MRI, hopefully it will mean my "chicken reflex" will not be my downfall...

mrhodes40 wrote:I had a uncommon complication in that my femoral vein access leaked and is painful now because blood went into the abdominal muscle. I have felxor spasms where my legs pull up uncontrollably and my stomach tightens down very strongly. I believe this is why I am having such a time with healing up that area and recommend you talk to your doctor about it if you too have flexor spasms and do whatever you need to do to make sure that you are controlled there so the area can be relaxed and heal nicely.
Surely there is a muscle relaxant which they could prescribe to minimise the spasms and allow more healing?
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Postby CureOrBust » Wed May 27, 2009 7:12 pm

Woah! three posts got in while I was typing!

cheer, see, I was thinking of something a little "stronger" like ketamine. But that's just me; go for the big guns.

Loobie, are you the next one scheduled for an MRV with Dr Dake? or was there someone before you? and while I divert your thread marie, do we know if Dr Dake is seeing others outside of those posting on ThisIsMS?
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Postby Arcee » Thu May 28, 2009 6:37 am

I think Dr. Dake is seeing more than the half dozen or so of us who are posting and have or had appointments with him. He has referenced in phone calls "seeing" 35 - 50 patients with MS - - it is not clear to me what that means exactly, could be case reviews, could be testing, maybe interventions. Maybe someone with more contact with him knows??

I'll be overlapping a bit with Loobie's visit (hoping to meet him!) in mid-July and it seems like there are a couple of others scheduled before then.
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Postby mrhodes40 » Thu May 28, 2009 9:09 am

Cheer said
accessory nerve

funny-- I wrote Dr D about that myself I also thought the accessory nerve must be a little irritated based on symptoms and position. He said he is not sure at this point what exactly is causing the ongoing neck discomfort and is not willing to commit to anything. A good thing is that ureteral stents can hit and pressure a nerve in the abdomen and it causes temporary burning pain in the frint of the thigh--so I am going to assume this is going to go away.

The abdominal thing is getting better, the trick IS good relaxants so the area can heal nicely. clonazepam or whatever your doc wants to keep it quiet down there.

Yes he is seeing others for sure. I do not know the totals but he'll have enough to publish something hopefully before too long!! Yay!

Cure your chicken reflex? They just used gadolinium for the MRI MRV. Have you never had gad in an IV? it is the same as usual nothing going into the veins but a regular IV.

Now I am going to go all devil may care usual cautious ways to the wind....this is anecdotal though...

AND GUESS WHAT GUYS!! JUST GUESS..........

I GOT ON MY ELLIPSE THIS MORNING, GUESS WHO GOT OFF AND DID NOT COLLAPSE ON THE COMPANY BED.....

GUESS WHO WALKED INTO THE LIVING ROOM.........

GUESS WHOSE FOOT PICKED UP A TINY BIT, NOTED BY HUSBAND BILL "HEY YOUR FOOT IS NOT DRAGGING" AS SHE DID SO.....

8O 8O :lol: :lol: :cry: :D :lol: :D :D :D

placebo? perhaps, but I am not going to bet on that, nor do I care. IF this is a placebo, I'll take two.
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 Needled » Thu May 28, 2009 10:27 am

Marie, I am so happy for you!! Who knows what other good things are coming for you (and Jeff, and all the others who are getting treatment)? Every post is getting more and more encouraging and exciting, even (or especially?) with a healthy dose of reality thrown in. It's really starting to feel like good days ARE ahead. :lol:
Take care of yourself and please keep the updates coming.
N
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Postby Loobie » Thu May 28, 2009 2:04 pm

Marie,

I'm not clear......I'm guessing your the one who did all that?? :lol: :lol: :lol: All I've got to say is Hells Yea! Woo hoo! That must feel so damn good.
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Postby peekaboo » Thu May 28, 2009 3:40 pm

WOW!!! this is terrific news marie

the hope that you are spreading is terrific. Sharon's next then me. we plan to meet if possible...i'm going bonkers :roll:

made my list and ready to pack and go....
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Postby mrhodes40 » Thu May 28, 2009 5:41 pm

Yeah, it was a realy fun trip for us, though on the way down we kept trying to temper our expectations just in case I did not have anything.... I enjoyed the pretty towns, the nice redwoods, the sleep in Eureka on the coast, the whole trip was fun for me, I wish you every happiness on your turn to evaluate this monster MS and see what is going on in your veins Holly!! :D

Even if all I get is no worse that would be a blessing. half the misery is what will happen next year........and not being able to plan for your future unless it is to think about what kind of nursing home you'd need. But I suspect I will get a little bit back...it seems like it may go that way

ANd hey I am all in for stem cells next......... :wink:
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 Arcee » Thu May 28, 2009 5:44 pm

Marie, congrats. Much deserved. Glad you are getting the time to appreciate it.
- Randi
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