Brit going to Poland

MartinHalford · Post by **MartinHalford** » Sat Jul 03, 2010 10:39 pm

It's Independence Day and it's time for me to check out of here and get back to Blighty. The exercise regimen is in force, and consists of 10 bridges, 5 dog balances (that lifting one arm and the opposite leg whilst on all fours), and from the yoga manual 3 sun salutations, 2 warrior poses, and a standing side pose. BTW these yoga poses are normally done at home on the Wii with a fitness board.

At 10pm last night (Yes - 10 pm on a Saturday night) Dr Kosteki dropped by at the hotel and checked out if I was OK, hand me my venogram CD, and wish me well. Dedicated is hardly enough to decribe this man! He goes on holiday shortly - and boy, does he deserve it.

hopeful2 · Post by **hopeful2** » Sun Jul 04, 2010 2:56 pm

How are you Martin? I'm back in the States after a long flight home to San Francisco Airport. I'm glad to hear of your improved ability in downward dogs and bridges!

Healing can continue even if you don't know it's happening. Just my two cents opinion with a dash of hope for you.

I ate breakfast alone this morning (Chris was still asleep and my dog is with family taking care of her while I was in Poland) and I missed you and the whole group from Tychy. I wonder how others are doing---especially folks who hadn't been treated by the time I had to leave on Saturday. Hope you're doing well!

Patrice

MartinHalford · Post by **MartinHalford** » Sun Jul 04, 2010 10:37 pm

My thoughts exactly, Patrice. Hopefully the others will update this blog. I have some of the email addresses that Google Bart had forwarded me and may organise those when I get a chance and scan for updates from the 'later' folks. Meanwhile best wishes to you and Chris - I'm off to do my morning round of exercises!
-- Martin.

hopeful2 · Post by **hopeful2** » Fri Jul 09, 2010 12:47 pm

Hello Martin---how are you? I've caught a cold and am resting at home---watching the CD movie of my Venoplasty. I think I need a more exciting movie than that!

Are you doing exercises and yoga poses? How are your symptoms now that we're one week out from the event?

I hope you're well. From your hospital "teammate" (we were a team weren't we?)---Patrice

MartinHalford · Post by **MartinHalford** » Sun Jul 11, 2010 8:50 pm

Hi Patrice,

Hope you've caught up with the time zone changes - takes some time doesn't it!

Sadly, my news isn't so good at the moment (which is why I haven't updated my blog at the moment). My mobility is actually less than before 'the Fix', such that I can't manage any of the planned yoga exercises. Of course, I have to give things some time, so I've got to be a bit patient, but right now its a bit depressing. Next week I'm committed to doing my follow-up video and so you'll be able to judge the impact/results for yourself. But right now I feel my plumbings in good shape but that ain't gonna do anything for my burnt-out electrical circuits.

Chin up - Martin.

Cece · Post by **Cece** » Sun Jul 11, 2010 9:48 pm

I am sorry to read this...could the travel have taken its toll? You have my best wishes for physio and improvements yet to come.

CCSVIhusband · Post by **CCSVIhusband** » Mon Jul 12, 2010 3:03 am

***

I'll say it ONE more time.

IF they don't find issues in the azygous vein ... they most likely missed something.

PERIOD.

I'm concerned for everyone going to Poland and VERY FEW reports of anything wrong with the azygous. If their goal is to treat a lot of people, skipping out on thoroughly checking the azygous is a way to do that ...

That venous system has a lot to do with blood-flow from the bottom of the body ...

I'll get off my soapbox now ... but I'd be VERY concerned if I'm paying (whatever the price is in Poland) and they're only looking at the jugular veins.

MartinHalford · Post by **MartinHalford** » Mon Jul 12, 2010 6:56 am

No need for the Soapbox, CCSVIhusband. Dr Kosteki and his team DO check the vein without a twin - they even give you the venogram images and video clips which show (to the educated eye) that the azygous vein is not blocked. I am confident that I have been privileged to have the best of treatment in Poland, even though my results are, at best, marginal. But then, I have been diagnosed with MS for 27 years, and so for this to provide an outstanding result, I'm sure I would have needed my plumbing fixed quite some time ago before my electrical wiring gave out.

CCSVIhusband · Post by **CCSVIhusband** » Mon Jul 12, 2010 7:04 am

True, I don't know your condition nor your deficits ...

I've just become more concerned with stories of people who went to Poland now looking to go elsewhere.

Luckily for us, we had the procedure done in the US and follow-up is easily available. In fact the first follow-up appointment is this Thursday ...

here is something I put together on the Azygous ... and why it is important in regards to MS ...

The Azygous Vein

* Begins at T12, as the Right Ascending Lumbar Vein joins with the Right Subcostal Vein
* Runs up to T4, where it arches forward over the root of the right lung, and ends in the Superior Vena Cava (SVC) – with a direct route to the heart

* It has a few (3 from what I can tell) imperfect valves, though its tributaries are provided with complete valves

~*~*~*~*~*~*~

Tributaries (main)

+ Hemi-Azygous Vein (left side)
Runs from T12 – T9, and starts at the Left Ascending Lumbar Vein OR the Left Renal Vein

+ Accessory Hemi-Azygous Vein (left side)
Runs top-down T4-T8, may continue to the Hemi-Azygous Vein OR cross to the Azygous Vein at T8

+ Right Superior Intercostal vein, Bronchial Vein, Intercostal/Posterior Intercostal 5-11, Superior Phrenic

~*~*~*~*~*~*~

* NOTE: The Azygous Venous System DOES communicate with the COMMON ILIAC VEINS via the Ascending Lumbar Veins

+ This would explain HOW if May-Thurner were present to occlude the Left Common Iliac Vein – blood flows into the Azygous System and relates to leg blood drainage. It would be the “detour” route in that scenario.
- However, the Azygous Vein is ill-equipped to handle the volume of blood from the legs that the Iliac Veins are (flowing into the Inferior Vena Cava), as the Azygous Veins are smaller.

It also explains how people feel the “MS Hug” – as this vein drains all of the rib veins – if it were occluded.

Blockage of the Azygous Vein and the Left Common Iliac Vein - would be bad news. Blood would get in ... blood couldn't get out.

Drury · Post by **Drury** » Mon Jul 12, 2010 7:32 am

MartinHalford,

So sorry you are not feeling as well but do give yourself time to get over the travel and all.

Wishing you continued improvements.

CCSVIhusband,

Thank you for that info - very interesting.

Good luck for Thursday.

Drury

Really interesting!

I agree how important it is to have follow-up treatment close by

CCSVIhusband · Post by **CCSVIhusband** » Mon Jul 12, 2010 8:55 am

I'm glad you enjoyed ... there's PLENTY more.

For example, let's say you have May-Thurner Syndrome and your Left Common Iliac Vein is occluded.

What veins drain into the LCI Vein? Funny you should ask (see if you have symptoms related to these areas) - this isn't all of them ... just a sampling

* Obturator - (I'd imagine it'd be hard for a man to "get it up" considering erections have a lot to do with blood-flow)

* Uterine - (same could be said about sexual dysfunction in women right - how many have a problem with dryness in that, er, region? Maybe I'm being a little too cavalier in my descriptions ...)

* Vesical - (bladder issues anyone? - intertwined with the rest of the sexual organs as well, penis, labia, clitoris, and so on)

* Rectal - (hmmmmm, did someone say #2?)

* Not to mention all blood-flow from the feet to the thighs (all of them flow through the Femoral Vein) (anyone have any numbness in those areas?)

So what if blood-flow is really what it's all about?

Blood can't flow from those areas due to venous issues ... it touches on the nerves to those areas ... and wham ... problems associated with MS in those areas.

You put your Left Common Iliac Vein in, you take your Left Common Iliac Vein out ... you do the hokey-pokey and you turn yourself about ...

HappyPoet · Post by **HappyPoet** » Mon Jul 12, 2010 9:35 am

CCSVIhusband wrote: You put your Left Common Iliac Vein in, you take your Left Common Iliac Vein out ... you do the hokey-pokey and you turn yourself about ...

Sooooo funny!!

Good luck to your wife on Thursday, CCSVIhusband!

I have to interject here because what you say makes SO MUCH SENSE!!

I have a longitudinally extensive thoracic lesion from T5 - T9 and have the MS Hug so bad that I will soon have no trunk control and will need to be strapped into a wchair to stop me from flopping forward.

The Hug is excruciatingly PAINFUL and can feel like repeated knife stabbings up under the rib cage and like being squeezed to death when the hug is completely around the torso. A partial MS Hug can feel like a shark bite on one's side or on both sides at the same time. Numbness can accompany the Hug. Both efferent and afferent nerves can, of course, be involved.

Okay, back to the program. ~HP

CCSVIhusband · Post by **CCSVIhusband** » Mon Jul 12, 2010 9:58 am

Thanks HP ... but I'm not done making my point yet.

NERVES of the body run ALOINGSIDE veins and arteries to all extremities of the body.

So, while the focus of MS has always been the brain/spine ...

WHAT IF they took an MRI of your nerves in your extremities?

Do you think they'd find similar lesions? (assuming blood stasis occurs in those areas - it does ... - HELLO CVI or DVT).

What really got me thinking about this was going to the "Bodies" exhibit in Montreal after my wife's liberation. (and actually seeing the entire nervous system taken out of the body and laid out on a table). It's not just the brain and spinal cord. There are NERVES EVERYWHERE. And most of them are replicated/duplicated/have pathways around ...

The nerves go all the way through the body (and have several pathways). So there is not necessarily a "dedicated" nerve that has to be touched off to cause an issue.

So what if you had venous problems all throughout your body? Couldn't your nerves/senses be disturbed?

For more fun, read the symptoms of CVI in the legs ... sound familiar?

My guess is neurologists have missed quite a few other things (as we've been learning).

hopeful2 · Post by **hopeful2** » Mon Jul 12, 2010 3:01 pm

Martin I'm sorry to hear of your set back. There are some who report their progress as two steps forward, one step back. It's not a linear progression in just one direction apparently:(

I'm in the one step back phase myself but just trying to ride it out. The cold I caught was worse than any I've had for decades! So either the cold or the CCSVI procedure has me moving very slowly today (and thinking rather slowly too).

Instead of jumping back into life in California I'm easing into it---whether I like it or not. If you're wanting to do a good yoga pose, the Corpse Pose is relaxing and not easy you to do well (keeping your mind focused on one thing as ancient yogi's professed to do). You might want to give it a try.

Patrice

Drury · Post by **Drury** » Mon Jul 12, 2010 3:32 pm

CCSVIhusband,

That was brilliant!

I have a question and forgive me if you have already explained before.

If your Left Common Iliac Vein is occluded would that mean that you automatically have May-Thurner? The description of the veins that drain into the LCI Vein and the related symptoms all make sense. Have you discussed this with your IR and got any feedback? Also has your wife seen her neurologist yet?

Drury