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.
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 hope I shared everything I'll probably add something later. I gotta put my head/neck somewhere else for a while
later, I've added a nother bit...