Marie's Long Stanford story

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

Postby mrhodes40 » Mon May 25, 2009 12:40 pm

Quickly, I have to go to bed saw my regular doc this morning I am having a little complication in that I have a hematoma in my abdomen so I have to rest it out, it is painful and a side effect of the angiocath, but sitting is not good for it. So one little post then off to rest.

Did I mention this is real surgery?--oh yeah, like many times :wink:

Yes my headache and neck ache are a lot better, still there off and on but mostly gone. no heat sensitivity and better temperature regulation. My weak right foot can dorsiflex a little bit and I can bend my knee a tiny bit. They are often completely immobile no matter how hard I try

I had my first bood recheck of the coags this morning I LOVE my primary care doc who checked me out and gave me the scoop on everything she couldn't wait to hear my whole story about the trip and what is going on etc. She is all in for this. SHe said "I read that paper and I was like OMG this is IT" She believes though that autoimmunity is probably a secondary effect, probably associated, in her mind, with cryptic bacteria (her specialty)...but that it will clear up when treated. We are very sympatico and excited by all this new stuff.

As for doctor stuff, she said the abdominal thing will just take time to resolve, the stents will take care and we will be doing coags every week, she believes that I should expect 6 weeks before I will be back to normal and can start saying that i am over the surgical event and we can see what is what
off to rest
mrie

To answer some questions:
no pull ups, probably a catheter they go right in at the pubic bone and you get a racy shave.....

heat sensitivity is way down going in the shower--I like it hot --is the same as coming out !!!

We talked the whole way home about buying a new Honda Element and going fishing in the mountains, we have not talked like that for years; there just was no point. feels good.

Coach I agree with Cheer no shortcuts. You have to self advocate and can't do it if you are not able to know it inside and out. Really let's be honest....the big thread is 50 pages, I KNOW we'd all read a book that big about it, and the thread is full of posts you can skip. I've mined it several times it is not that bad. So start with the research then go through that thread then decide what of the other threads interest you. In a week you'll be up to speed and deciding if this is interesteing to you or not.

off to rest guys see ya...
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Advertisement

Postby peekaboo » Mon May 25, 2009 2:50 pm

hope all is well...

Dagnabbit i still have q's before i go.

Next ? why take blood thinners if the reason for one's venous obsruciton is not necesarly from traditonal plaque or fat?
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby mrhodes40 » Mon May 25, 2009 5:09 pm

Peek the blood thinners are because the stents tend to cause clots and plug up that way until the endothelial lining has coated it nicely hopefully at 2 months.

My healthcare is intense, my coag numbres from this morning's blood draw were too low so I need a dose adjutment of the coumadin and a new test thursday and we'll see where we are from there....

THis is why you need proper medical help at home..

BTW the hematoma complication is not that common but it can happen. I think the flexor spasms I get in my legs occassionally at night where my leg pulls up strongly are partly at fault becuase I suspect that disturbed the site a little and pulled on it so the blood could leak in to my abdomen a little and cause this issue. Doc assures me this is more painful than terrible its just a rest thing..........
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby CureOrBust » Mon May 25, 2009 5:16 pm

peekaboo wrote:Next ? why take blood thinners if the reason for one's venous obsruciton is not necesarly from traditonal plaque or fat?
Lets check if I have been listening...

From my understanding, the blood thinners are taken to reduce the likelihood of the body's natural mode of operation to form a clot around a foreign body. Which it may see the newly placed stent as.
User avatar
CureOrBust
Family Elder
 
Posts: 2910
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby Sharon » Mon May 25, 2009 5:31 pm

Marie wrote:
My weak right foot can dorsiflex a little bit and I can bend my knee a tiny bit. They are often completely immobile no matter how hard I try


Yipee!! Marie, a "tiny bit" is great news. One week and look at you! Your personal thermostat is working better, you are talking about an active future, and your foot is actually bending. You go girl!!

Get some rest and get that hematoma settled down - they look worse than they really are. BTW - Colorado has some beautiful mountains and I know where the best fly fishing is - the new Honda Element is cheap on gas - my guest rooms are always ready - go for it! come to Colorado.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby mrhodes40 » Mon May 25, 2009 5:46 pm

check if I have been listening...

From my understanding, the blood thinners are taken to reduce the likelihood of the body's natural mode of operation to form a clot around a foreign body. Which it may see the newly placed stent as


gold star for CUre!! head of the class........ :wink:

Thanks Sharon feeling pretty good about things in general just need to rest that hematoma. sitting is bad for it which means I gotta go...
mrie
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby jimmylegs » Mon May 25, 2009 6:18 pm

vitamin E anywhere in the blood thinning list?
jimmylegs
Volunteer Moderator
 
Posts: 9003
Joined: Sat Mar 11, 2006 4:00 pm

Postby mrhodes40 » Mon May 25, 2009 6:20 pm

IMPORTANT REPLY:

I recieved an email from Dr Simka regarding doppler and in reply to the information in my first post on this thread where I talked about the dopplers I had....

I said
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.


Dr Simka said

I have some remarks regarding dopplers. This examination is very operator-dependent. I have learnt a lot from the Jeff's and yours stories, and I think that in both cases some abnormalities could be revealed with ultrasounds, even if the lesions were localized in the area not accessible for the probe. It should be remembered that you can find only these things you are looking for. And what should be found in this particular anatomic variety? I am rather sure that in such a case in patient in supine position the flow in vertebral veins will be very high, these veins will be more visible than usually, and this should be regarded as a pathology. We have seen such pattern in all patients with bilateral stenosis of jugular veins (localized in the middle part of neck), and similar findings should be if a stenosis were localized very high. Moreover, in 2 patients we have observed paradoxically increased flow in jugular vein proximally to stenosis in an upright position (usually in this position the vein collapses and the flow is diminished), probaby due to stiffness of the diseased venous wall. Thus, as a screening test dopplers should be very usefull, since this examination is cheaper and easier to perform than venographies. Still, it should be remembered how operator-dependent it is

There we go.........a published researcher with expertise in doppler work.
enough said on THAT score.
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby alta » Mon May 25, 2009 8:05 pm

Marie,

Wonderful news to hear your heat sensitivity is way down in the shower. Also great to hear that your right foot can dorsiflex a little bit and you can bend your knee a tiny bit. Can’t wait to hear more as time passes by.

I found your story regarding the anesthesia quite interesting. I have been fine sometimes and gotten sicker than a dog other times. Now I wish I knew what kind I was given when I got sick.

Glad to hear the headaches and pain is getting better and you’re thinking great days ahead. You deserve the best. Hopefully some day soon you can real in the big one. DH and I did a lot of fishing years ago and would make bets to see would catch the biggest and most fish. Lots of good memory’s and funny stories.

All your input on this board has helped a lot of people. Some of the stuff you talk about the average person wouldn’t have the knowledge to even think about it. I really appreciate your sharing all the pros and cons.

Sharon and peekapoo good luck with your visit at Stanford!

Take Care,
Alta
User avatar
alta
Getting to Know You...
 
Posts: 10
Joined: Tue May 05, 2009 3:00 pm

Postby CureOrBust » Tue May 26, 2009 2:18 am

mrhodes40 wrote:I recieved an email from Dr Simka regarding doppler and in reply to the information in my first post on this thread where I talked about the dopplers I had....

I said
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.


DrSimka wrote:It should be remembered that you can find only these things you are looking for.

There we go.........a published researcher with expertise in doppler work.
enough said on THAT score.
marie
And, my doppler radiologist found a reflux in my IJV. So is my problem is that I have a valve where there should be none...
User avatar
CureOrBust
Family Elder
 
Posts: 2910
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby mrhodes40 » Tue May 26, 2009 6:20 am

So is my problem is that I have a valve where there should be none...
That girl is just a nut ball. Can't wai for your more advanced tests Cure.

Alta thank you. I am glad I helped. :D
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

U

Postby wobbly » Wed May 27, 2009 12:25 pm

GO THIS IS REAL/ VERY PROUD OF U/ STAY STRONG 8O 8O 8O
User avatar
wobbly
Family Member
 
Posts: 73
Joined: Thu Jan 01, 2009 4:00 pm

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: Robnl


Contact us | Terms of Service