Our trip to the local vascular neuroradiolgist

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

Our trip to the local vascular neuroradiolgist

Postby hoodyup » Thu Mar 18, 2010 8:09 pm

Well, guys today was a day and a half for the two of us. Starting with yesterday. Home health nurse installs foley catheter to prevent peeing while in the MRI tube. Today woke up at 4 am to get ready for 6am ride with the local medical transport company. They have the only full size wheelchair lift equipped vans in the area. On the way Sharon becomes nauseous due to the driver's lack of cornering skills and lets her know by puking all over the van. The driver gets lost on the way and makes a crazy exit on the freeway, stopping traffic. We arrive late and all the appointments are pushed back. Sharon is unable to transfer onto something as tall as the MRI guerney, so a lift is employed to get her out of her chair and onto the table. I wish we had one for the house for those tough days. Oh, and the Atavan was helpful, too, in calming her down for the tube. Anyway, we spoke with two vascular surgeons. One who specializes in legs veins and one who does more with stroke victims and micro tumor ablations. Both are 30 year career interventional radiologists with tons of credentials. The leg guy did a doppler on her legs and declared the veins to be functioning fine. Her trouble is elsewhere. The leg muscles are not doing the job, due to inactivity, for her blood to return from the feet unless elevated. So he didn't tell us anything new. The head and neck guy looked at her MRV and said she had a small right internal jugular vein with little flow and lots of spider veins. In the left IJV he saw a narrowing. He then did an ultra sound and tried to view her azygos vein (unsucessfully). However, he said the spider veins were more readily detectable on the doppler than the MRV. Based on the MRV and Doppler he recommended an venogram/angioplasty. He has heard of the situation at Stanford and is reluctant to use stents unless a restenosis occurs. So we have a time frame of mid April for the procedure. We've waited this long. Anyway, finding a problem is half the battle, so we are on our way, folks. Thank you, Cheer, MRhodes, Loobie and all the people who helped us get this far. You're all appreciated. It's been a long day. Goodnight!
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Postby mangio » Thu Mar 18, 2010 8:36 pm

God bless those good doctors and I pray so much she can get her health
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Postby bluesky63 » Fri Mar 19, 2010 5:17 am

It never sounds right to say I'm glad they found something wrong, but in this case that's how I feel. And it's great that you have found experienced professionals who are going to go ahead with the right procedures. I can't wait to hear the updates. :-)
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Postby Vhoenecke » Fri Mar 19, 2010 5:59 am

It sounds like things are working out for you. I wish you all the best and I too will reluctantly say "I'm glad they found something". I always have a hard time with saying that. What a long journey you have made thus far.
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Postby TFau » Fri Mar 19, 2010 6:33 am

Congratulations for getting this far - what a great husband you are! And your wife is very courageous!
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OMG I can't believe I survived yesterday!

Postby Boopieup » Fri Mar 19, 2010 8:53 am

Hey all! Hoodyup's wife here.
I have one word to summarize yesterday.

That was rough. Even in an old electric wheelchair it was extremely difficult.
I was away from my comfy bed and house for 11 hours.

Just to clarify--I puked twice in the van on the way to the docs. My food from the night before didn't get digested. I didn't feel sick. It must have been the cathetarization trauma (I've never been catheterized before) and the driver's inability to drive nicely and safely.

I am glad I went because the doctors were very interested and almost fascinated by my scans and what was found. The leg doctor said that I do not have varicose veins. I even saw a valve flap in my leg that was stuck open unless the leg was squeezed. I was really blown away to see the leg doctor sit there, squeeze my calves and watch the screen while the technician went through the process. I'm used to doctors just reading a piece of paper and telling me what a another guy (radiologist) said and that's that--not actually participating like the two docs I saw yesterday.

The neuroradiologist also watched the neck veins being scanned and pointed out the spider veins on each side of the neck. So angio it is. No blood thinners! yay! Just baby aspirin. I told him I'd like to be awake. He agreed that it's best not to put MS patients under. He said that is so hard on the brain and MSers don't handle it well.

So, I'm "in" and looking forward to any possible improvement.He did say that this won't reverse any damage done, but will hopefully help.

We will update my blog every evening after the procedure to let everyone know how it goes. My blog has been a downer so far, so I hope it becomes a little more happy.

Oh...and yay Ativan. I couldn't have done the MRI tube without it. Since the bottle says once a day, I couldn't have taken it before riding in the van anyway. I tried before the MRI while still in the vehicle and it came back for a recall anyway.

I do believe that a state of mind has an effect on the body. More happy pills!
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
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Postby ozarkcanoer » Fri Mar 19, 2010 9:53 am

Boopieup, Thanks for your update !!! Keep the news coming.

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Postby hoodyup » Thu Apr 15, 2010 4:48 pm

Our day actually began the day before with the home health nurse installing the foley catheter so Sharon could make this long trip. A nurse came out earlier in the day and installed one, but it got pulled while she was sliding to the potty chair and was causing her pain.So we took it out and we called them out to put a new one later that night and that one was ok. The next morning had Sharon waking up at 3 and me at 4 to get ready for the big day. A transport company was to arrive at 5:30 to take us to the IR for her venogram/procedure. They arrived at 4:45 and we were nowhere near ready. She couldn't make the transfer from the manual chair to the power chair. So we brought in the local fire dept by calling 911 so she wouldn't wind up on the floor. It is called a lift assist or something like that. Four big beefy boys came out and 2 of them lifted her by her legs and shoulders and got her into her chair so we could make the appointment. Her arms are sore from it still. This time the transport company driver didn't get us lost or make her airsick (hork) with their lame driving.

So we arrive at the IR without any further incident. She is taken into Radiology at 8 and given a neuro exam (pricking with paperclips from head to toe.) She had very little feeling from her knees down. They start an IV with mild sedation. At 9 she is taken into Radiology. They prepped her groin area, and set up their dropcloths and then she fell asleep. At one point she woke up and felt the doctors hand pushing on her groin. She didn' t feel anything else during the probing or the contrast injection and was asleep for this. When she next woke up the balloon was in her right jugular and she spoke up "HEY". The doc then ordered the nurse to give her more drugs and she was back out in a second. When she awoke the third time she says she hallucinated a bunch of bikini models in the corner of the operating room. She had no idea where she was, there was an X-Ray machine in front of her and the probe was still in her vein. The doctor removed the probe and the machine and they were done. It was around 12. After recouperating for an hour or so and getting some fluid and graham crackers we spoke to the doctor about the procedure. He said her left IJV and Azygos looked fine but there was narrowing in the right (which is smaller than the left) IJV. He said the flow was barely trickling on that side. There were 2 collaterals which were as big as the vein itself. He ballooned several spots to increase the the diameter. He was satisfied that normal flow was restored after this was done and the vein held up at least for as long as he was in there watching it. I asked the doctor if he wanted me to keep his name off the internet and he said "PLEASE". He doesn't want to be innundated and get a lot of attention for what he is doing. He said, however, that he spoke with his head neurologist about CCSVI and she said that if she had MS she would get scanned and angioed in a hot second. He said they know that this stuff is all over the internet and the lid can't be kept on it forever. Right now we are just at the beginning. We are just the 3rd MS patient he has done this procedure for. He did say that he didn't think this procedure was risky at all with just the angio and that he would wait on stenting any veins to see if A) the procedure had any positive effects B) a relapse of symptoms and restenosis occurred. So did she come flying off the table singing an operetta? Nah, she was too wasted on the "conscious sedation" they gave her. In recovery she was pretty tired but came back around after the drugs started wearing off and was quite talkative. Her neck was a little sore, but her arm hurt worse from the firemen. She said her legs and feet didn't hurt nearly as much as before. From a 4 on the pain scale to a 3 or a 2. All in all it wasn't too bad of an experience for her. Her last dentist appointment was probably more painful. But then we got home and in trying to transfer onto the manual wheelchair to the power chair once again she wound up on the floor. (Two days ago a home medical equipment company delivered a Hoyer lift, but it won't work with the power chair because the base is too narrow to accomodate her power chair...) We employed the Hoyer lift (still waiting to be returned) and lifted her off the floor and onto the manual chair and off to bed she went. Even though she fell (she was exhausted) the time on the floor and the amount of freaking out was at a minimum as compared to other floor events. While in bed she experimented by laying her bed down flat. She hasn't been able to do this for years without experiencing vertigo and nausea. She tried it and felt fine! She said she could tell something is different. I can't wait to see what tomorrow will bring after she has had a good nights sleep.


Well, she awoke from her nap of an hour or so and said that her vision has improved slightly and that "things seem clearer". She is not having to strain to see the computer. Just tilting her head back before would make her dizzy now she says it is no problem. Her left hand also feels stronger. Makes sense, right? Right brain, right vein -- left side of the body. I feel like I am watching a little baby seed about to sprout can't wait for it to hurry up and become a tree. And start flying around singing opera. But as of right now she says "I do feel better". I guess someone is going to lose that bet!

list of improvements: (day 1 and part of day 2)

more feeling in fingertips
better strength in left hand
improved vision
easier to transfer to potty chair
fatigue is less
arm strength is better -- able to lift self on potty chair (pushups) with arm strength only
voice quality is stronger
feels a lot more clearheaded
oh, and get this--she took a hot shower for the first time in 5 years and it felt great--she didn't even notice that the water was nice and hot!
transferring back to the bed from the shower chair was easier
breathing feels less labored -- hasn't felt the need for the O2
no vertigo when leaning head backward or lying flat
freakout mode not happening when feet are on the floor
standing while holding self on wheelchair for 30 sec without 02 (pre procedure was 15 sec w/out O2 and 30 sec with O2)

areas still of concern:

still having issues with bladder -- peed bed during the night LOTS of urine
some double vision when turning head
right leg twitched a bit during the night
feet still turn purple when on the floor, but not as painful
still falling, leg and ankle muscles atrophied and need rehab

It's a nice day outside, we might see about getting her into her power chair and going for a cruise around the property. More on this later.

Ok, it's later. I can see that this is going to take time or we will be in for serious setbacks. We tried unsuccessfully to get her into her power chair. The floor. Again. This time no Hoyer lift (they came and took it back this morning). So we placed a sheet under her and she scooted all the way back to the bedroom on her butt. Once there after resting and O2 we did our famous "get a leg up" procedure and kind of rolled her onto the bed. This is a person who has been doing not much of anything but bedrest for 2 years. She has no calf muscles or ankle muscles. We need some very gradual strength building exercises that she can do in bed to get her back to being able to get into that power chair. It is a very difficult transfer for her. Until then, we have a new Hoyer lift coming with better accessiblity. She is now recovering in bed, and her recoup time is less than previous floor routines. We need to keep her off the floor so I guess I will have to be the voice of reason when she thinks about trying stuff that is still too difficult. At least she wasn't on any blood thinners so she won't bruise up or bleed. It is just so sad to see her try so hard and still wind up on that floor and be unable to do much of anything to stop it once it starts to go south.

I don't want to eat my words so we are just taking it as it comes and making notes on what is and isn't happening. Despite the setbacks I still have to say we are both glad we did this. People: never, ever give up. Even if it is just a little bit of an improvement it is worth doing. She has a lot of rehab to do, but maybe now we can start to go the other direction (while staying off the floor).

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Postby ndwannabe » Thu Apr 15, 2010 5:25 pm

Thank you so very much for a very detailed and complete (the good and the bad) update!

You guys are going through so much. Andrew - you are a great husband. They should make a poster for the wedding wows “For better or for worse” with people like you.

Hugs and wishes for the improvement (((Sharon and Andrew)))
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Postby ozarkcanoer » Thu Apr 15, 2010 5:32 pm


Thank you very much for this account of Sharon's procedure. What a journey you two have been through. Sharon is a real fighter ! I hope for the best outcome for her. Tell her we are rooting for her.

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Postby Johnson » Thu Apr 15, 2010 7:21 pm

Boopy & Hoody,

UP, Up. UP!

Thanks for posting. It's humbling to me to read of your fighting spirit. You two have guts. I'm certain you will improve hugely. All the best to you both.
My name is not really Johnson. MSed up since 1993
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Postby Katie41 » Thu Apr 15, 2010 7:27 pm

Sharon and Andrew,

Wow! Great job! You two certainly are fighters. That will take you a long way. Can't wait to hear your "step by step" improvements. :D

Best Wishes,

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Postby CureIous » Thu Apr 15, 2010 10:58 pm

So incredibly freakin awesome you guys. Well done. An inspiration to others. Some of the issues may take some time, that seems to be the norm across the board for those with higher edss, but the improvements so far are nothing to sneeze at by far.

You guys did it all on your own and you done good. WOW.

Keep us posted!

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 ErikaSlovakia » Thu Apr 15, 2010 11:42 pm

Hi hoodyup!
Well, you really do not have it easy but you are both a real fighters!
I follow your story since the beggining.
It was also my very first improvement to see clearer.
Take it easy, it takes time. On the other hand I understand you must try things to see how it is.
I had a set back in January and February. My fatigue was worse.

I wish you both the best!!!
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby hoodyup » Sat Apr 17, 2010 4:18 pm

Thanks for your encouragement guys. I figured I'd update once and a while as things go so others could get an idea of what results we are having post-liberation.

Day 3
Sharon was able to empty her commode after a #2. This would normally have wiped her out for the rest of the day. But this time she felt well enough to go out onto the deck in her manual wheelchair. She was in the sun for about 45 mins. Previously, she could handle only 20 mins at a time and it would take a toll on her (vision deteriorated, heat fatigue and anxiety would set in). This time she just sat there enjoying it and moving around to bake her different parts. She was talkative the whole time and didn't experience vision loss or fatigue. I have also noticed a lot more veins on her feet, even when elevated, which were not visible before. Her ankles seem less swollen. I don't know what this means, but judging by my own huge foot veins (I am pretty healthy) I am guessing it is a good thing. She says her left arm is getting stronger so I had better watch out. She has been having some bladder issues while sleeping, more so than before. She has ok control while awake, but wakes up peeing in the middle of the night. She thinks she may have a bladder infection from the foley, but she isn't experiencing the burning feeling. So many things are better now, I am just hoping this will sort itself out, too.

I now know that what others have been saying is true: CCSVI is real, and fixing it will only improve the person's condition who has it. How could a placebo do this? If she was capable of willing herself to improve on her own don'tcha think she'd have done that before this? Neuros watch out for that left hand!

I am also hoping that by sharing these results with her doctors and anyone and everyone that it will help add to the ever widening pool of "anecdotal reports" of MS patients benefiting from the Liberation Procedure. It was by reading about other people's experiences that we arrived at the decision to have her scanned and treated for CCSVI. I look forward to reading about others who want treatment getting liberated and experiencing these good things for themselves.

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