High Hopes on Pacific Coast

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

Postby Loobie » Thu Dec 03, 2009 11:36 am

Yeah man,

We just need to know that it appears a completely logical correlation going on here.

RRMS short time - inflammatory based disfunction - turn off the inflammation cause - things get better.

SPMS - not inflammatory but degenerative = damage. Damage takes more time to repair than shutting off the source of inflammation, so things will still flare up when you are overworked since they are damaged. So it stands to reason that only cerebral based things like dizziness and that will be affected short term.

But now me being 5 months out from initial procedure I can definitely say that at rest, I'm 1000 times more comfortable. I can put myself right back in the throes of feeling as lousy as I ever had, but I was starting to feel like that just sitting there. Now when I get up from a seated position and just walk down a corridor at work, my legs feel almost normal. Things are happening slowly, just like our progression did. I hope to God it continues to go in that direction. I had buyer's remorse immediately because I didn't get any immediate results. Now that I've gone 5 months (7 w/out immune modifying drugs), I have nothing but hope for the future. It's still very guarded, but it's there, and I think I speak for a lot of us, I'm almost useless without hope.

I'm not done yet though. I have a 12/16 appt. with Haacke to look at the SWI images and even think I'll try to get an "educated" doppler look as I still am baffled at the disconnect between Z's and D's azygous findings. It seems to me that the membranous obstructions in a vacuum of stenosis would be impossible to pick up with imaging only. That's my $0.02 worth anyway. I'm going to keep plugging away at this since I feel better when I have a plan of action. Just sitting and waiting for something to happen feels eerily familiar to when I was on the CRAB's and under "Dr's care".
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Postby zap » Thu Dec 03, 2009 8:29 pm

What would venography show when the probe crossed a membranous obstruction?

(And has Dake found ANY membranes yet, I don't recall?)
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Stanford Update After 8 Months

Postby questor » Thu May 20, 2010 6:36 pm

It's been months since I've posted an update. For the record, here's part of a note I just sent to someone as an update after 8 months.

----------------------------------------------------------

Hello,
There is still a lot of day-to-day variability in my condition, and I am still definitely susceptible to stress. I have been going through some stressful family issues these last several weeks, and this has taken its toll on my sense of progress. But, the improvement I still experience in the reduction in night-time spasticity in my lower legs continues to give me hope for better things to come. As I've said before, this improvement was noted the first night after the stent procedure at Stanford, and overall is still 90% better than before the stents.

Other improvements with time have been increased strength in my legs, better bowel regularity and peristalsis, better facial colour (I look better, for what it's worth). Less need to self-cath to empty my bladder (I am back to using manual hand pressure to do this, I know it's time to self-cath again when the night-time trips to the bathroom get too frequent), and a reduction in bladder urgency and leakage.

With respect to other symptoms, as time goes by it becomes harder and harder to know what benefits I have experienced.

The hardest thing overall has been the damage/atrophy in my right shoulder related to the stent placement (accessory nerve impingement). I am still recovering very slowly from this, but it has been very hard to be patient. Exercise has been an important part of my "feeling-well" for at least 20 years now, and although I have had to diminish what I can do because of disease progression over the years, the pain in the shoulder and its "hit" to my exercise regimen has been very hard to take.

I do use a cane less often when I go out, and when taking short early morning walks, but I still need it on occasion. Particularly for balance stability in the evening.

I still am troubled by afternoon "cognitive-fog", poor memory and recall, some vocal slurring on occasion, poor balance, body fatigue, optic neuritis, nystagmus, impotence, etc. But, I think my better days are better than before the procedure last September.

So, I hope this helps answer your question. I have remained quiet on the forum for several reasons, but mostly because I think we need more scientific medical evidence, and less anecdotal talk to help people who are considering the procedure make an informed decision regarding risks and benefits.

Especially now, as how I feel anecdotally is often less than positive, especially when the body-fatigue and cognitive-fog are acting up.

Still hoping for the best, for all of us,


--Tracy
Last edited by questor on Fri May 21, 2010 12:49 pm, edited 1 time in total.
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Postby costumenastional » Fri May 21, 2010 1:38 am

Loobie wrote:Yeah man,

We just need to know that it appears a completely logical correlation going on here.

RRMS short time - inflammatory based disfunction - turn off the inflammation cause - things get better.

SPMS - not inflammatory but degenerative = damage. Damage takes more time to repair than shutting off the source of inflammation, so things will still flare up when you are overworked since they are damaged. So it stands to reason that only cerebral based things like dizziness and that will be affected short term.

But now me being 5 months out from initial procedure I can definitely say that at rest, I'm 1000 times more comfortable. I can put myself right back in the throes of feeling as lousy as I ever had, but I was starting to feel like that just sitting there. Now when I get up from a seated position and just walk down a corridor at work, my legs feel almost normal. Things are happening slowly, just like our progression did. I hope to God it continues to go in that direction. I had buyer's remorse immediately because I didn't get any immediate results. Now that I've gone 5 months (7 w/out immune modifying drugs), I have nothing but hope for the future. It's still very guarded, but it's there, and I think I speak for a lot of us, I'm almost useless without hope.

I'm not done yet though. I have a 12/16 appt. with Haacke to look at the SWI images and even think I'll try to get an "educated" doppler look as I still am baffled at the disconnect between Z's and D's azygous findings. It seems to me that the membranous obstructions in a vacuum of stenosis would be impossible to pick up with imaging only. That's my $0.02 worth anyway. I'm going to keep plugging away at this since I feel better when I have a plan of action. Just sitting and waiting for something to happen feels eerily familiar to when I was on the CRAB's and under "Dr's care".


Your posts are always worth the read man. Please, continue to inform us with your realistic insights and good luck for the future. To you and to all of us.
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One Year Later - Stanford Exam

Postby questor » Wed Sep 08, 2010 10:02 am

I had my one year exam at Stanford yesterday, the MRI showed that my stents are still working fine. Here is a summary of changes in MS symptoms I have noted over the past year. We discussed these at my appointment.

1. For the first several months after treatment, I experienced no nighttime spasticity in my lower legs. Starting last February or so, this symptom began to trouble me again, a few times a month. I am back to using an over-the-counter ionic magnesium powder to help quiet this when it troubles me, but it is still much better than before the stents. Before the stents, this was a nightly problem for me.

2. Lower body strength has improved, and also my physical stamina. I now take daily walks and exercise about 45 minutes every other day, using a light free weight routine at the local spa. I still use a walking stick on occasion, but less frequently than before the procedure. The frequency and distance of my walks seem to have increased post-procedure, and the length of time I can exercise seems to have increased (up from 30 minutes, or so).

3. I no longer experience feelings of anemia. This was a frequent problem before the procedure. (I have no idea if there is a connection to the stents, but I used to frequently eat liver for breakfast and lunch several days in a row to treat feelings of anemia, light headedness, and a tendency to pass-out on standing. It has been at least a year since I have felt the need for this.)

4. Bladder urgency, leakage and frequency have improved. I have fewer accidents these days, and no longer wear padding for protection. As noted before, I can't tell how much of this improvement comes from no longer using LDN, but I suspect there is some relationship (I have tried to restart LDN twice in the last year, but gave up each time after a few days because leakage and urgency problems reappeared). I no longer self-cath for retention problems, I used to do this a few times a week before going to bed, I now only use hand pressure to help clear my bladder, and this seems to be working well enough.

5. Physical fatigue has not been as much of a problem this year for me (this is a feeling of body pain/discomfort that I experience when I have pushed past my stamina limit). This feeling seems to be centered behind my left eye oddly enough, the eye most affected by optic neuritis, nystagmus, and poor muscle control. This improvement may be related to the daily baby aspirin I started taking after the stents were installed. In the past, I used to take a small handful of aspirin a few times a week to reduce the sensation, typically after returning from a short workout at the spa (I first started to do this after reading the pubmed reports that aspirin appeared to be as effective as modafinil in treating MS fatigue). As another example, before the stents I used to experience discomfort in my legs daily toward the end of the day, so that standing was uncomfortable. This no longer happens. Aspirin, or stents? Who knows.

6. My bowels have been much better this last year. Peristalsis seems to be much improved. I often have two movements a day now, compared to one every few days. This benefit is probably directly related to my increased walking and exercise ability (which includes three sets of 50+ sit-ups every other day). Relationship to stents and better blood flow?

7. Reduced night-time paresthesia in lower legs. This was a frequent and annoying problem before the procedure, but it seldom troubles me now at the level that it used to before the stents. (My lower legs used to feel like elephant legs as I lay in bed at night, with a fuzzy buzzing sensation that made them feel larger-than-life).

My right shoulder is still a problem, but I keep working at it, and continue to feel slow improvement with time. I miss practicing Tai Chi (the arm movements are a problem) and yoga's downward-facing dog is a thing of the past, but maybe someday. I keep stretching and working the arm shoulder in ways that don't cause re-injury. Slowly improving.

About the question of whether the stent treatment has stopped my MS progression, I don't think so. I experienced a new symptom this year (loss of some feeling/sensation in my left and right forearms), and my walking disability is worse once I have pushed past my stamina threshold and if I get over-heated. To state this seems funny after noting the above symptomatic improvements, but that's how things appear to me, a mix of continued slow MS secondary progression, and some symptomatic improvement.

About the balance instability, heat sensitivity, migraines, impotence, vision problems, cognitive-fog, etc, no detectable change or improvement. A side note, very early on after the stent procedure I did report that I no longer experienced heat sensitivity. I now feel this early improvement was an unexpected side-benefit of the narcotic I was taking for pain.

For the record...


--Tracy

Edit 03/13/2011 - added point #7.
Last edited by questor on Tue Mar 15, 2011 8:34 am, edited 4 times in total.
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Postby CRHInv » Thu Sep 09, 2010 9:22 pm

Tracy!
Thanks for the detailed update. I don't check in as often as I should, so I almost missed it. I appreciate you posting this for all of us.
Rhonda, Rose2 and I will all go for our one year visits next month. I will post what happens in early November, since my date is late October.
Take care and thanks again!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby magoo » Fri Sep 10, 2010 5:54 am

Tracy,
Thanks so much for posting and keeping us updated. :D
I have a question. Why didn't Dake do another venography? I know the MRI suggests things look fine, but Zamboni doesn't think this imaging is good enough to detect abnormalities. Do you think there could be more going on?
Be well and I hope healing continues.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Rokkit » Fri Sep 10, 2010 7:30 am

Tracy thanks for the honest update. I am also wondering about the possibility that you (we) were under-treated the first time around. It's always bothered me that Dr. Dake found very few azygous issues. There's also the new issue of going in from the left to rule out MT, etc. The only alternative to under-treatment seems to me that something's going on in addition to CCSVI, which of course we hope is not the case. I've also wondered if it's possible CCSVI leads to a build-up of iron, the effects (immune response) of which take some unknown amount of time to diminish. All just rambling thoughts I know, not much help to you. I feel pretty similar to you it sounds like and I never had RRMS. I will give a full report when I get back from Stanford next month.
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Postby questor » Fri Sep 10, 2010 8:42 am

magoo wrote:Tracy,
Thanks so much for posting and keeping us updated. :D
I have a question. Why didn't Dake do another venography? I know the MRI suggests things look fine, but Zamboni doesn't think this imaging is good enough to detect abnormalities. Do you think there could be more going on?
Be well and I hope healing continues.


Hi, Rhonda,
Dr. Dake said he would be willing to go in and look around if I wanted to pursue additional angioplasty treatment, although there was only one area on the MRI that suggested a potential minor problem.

I told him I would contact him in the future if I wanted to go forward with this. As it is, I'm extra wary/cautious about going in for another treatment given the shoulder issue, and I told him I would contact him in the future if I wanted to give this a try. In the meantime, I think exercise, copaxone, and diet changes are my best bet for taking care of myself, and I'll wait for more news as the treatment technology develops (and results of ongoing trials get published).

Thanks for your comment,

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
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Postby magoo » Fri Sep 10, 2010 9:07 am

I appreciate your decision to wait. It's good to know that Dake gave you the option! I'll be there October 25th with Beth and Rose2 to get checked. Be well.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby questor » Fri Sep 10, 2010 7:02 pm

Rokkit wrote:Tracy thanks for the honest update. I am also wondering about the possibility that you (we) were under-treated the first time around. It's always bothered me that Dr. Dake found very few azygous issues. There's also the new issue of going in from the left to rule out MT, etc. The only alternative to under-treatment seems to me that something's going on in addition to CCSVI, which of course we hope is not the case.


Rokkit, I share your concern. Perhaps we were under-treated the first time around. I've even considered lining up for an evaluation at BNAC-JNI to get their take on my condition. But, I think your concern applies to everyone being treated anywhere by anyone for CCSVI in these early days, including Dr. Zamboni. I think this is the reality of the uncertain relationship between CCSVI and MS, and the early state of the treatment technologies/protocols. We are all anxious for the medical understanding to advance.

I think the "something else going on" in my case is secondary-progressive MS. I personally doubt that CCSVI will provide all answers to all-things-MS, but I was anxious last year to experience the potential treatment benefits for myself as described by others.

I have and, in my case, the CCSVI treatment has brought me some symptomatic relief, but hasn't stopped my MS from progressing or eased my disability substantially (my particular MS progresses too slowly to be certain the exact effect CCSVI treatment has had on progression, but I have noticed a new set of symptoms and some worsening over the past year).

I'm lucky enough to feel comfortable waiting out the time it will take for more medical evidence and treatment protocols to develop. When they do, I'll be back on the table as soon as possible. In the meantime, I'm sticking to the Best Bet Diet, Copaxone, and as much exercise as I can tolerate.

I look forward to your report after your Stanford visit next month.

Best regards...

--Tracy
Last edited by questor on Tue Oct 05, 2010 8:37 pm, edited 1 time in total.
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Postby Loobie » Sun Sep 12, 2010 5:20 pm

Tracy,

I swear it seems like I was reading a text I could have written. Although I 'feel' WAY better than before, I too, when pushed passed the threshold, feel worse. But then I recover and it is what it is. Not sure what that's all about and I also had some sciatic nerve caused numbness in my left leg that has caused me problems. It's like it 'picked' and chose things to get much better while leaving other things alone. Although I have to say, anything that has come on has been very ssslllloooooooooow, so that's a good thing. I'm glad to hear your shoulder is still improving. Mine is to the point where it doesn't even hurt anymore and I have full range or motion and strength. BUT it took over a year to get here. Hang in there man, it's good to hear from you!
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Re: High Hopes on Pacific Coast

Postby questor » Thu Dec 01, 2011 11:18 am

An update, I just had my 2-year follow-up at Stanford. My IJV stents are still open and looking good.

During my appointment, I gave Dr. Dake a copy of the result of a brain MRI prescribed by my Neurologist from August of this year. This MRI was performed by the same outfit that has run MRIs on me several times over the years, the most recent prior to this was performed in November 2008.

The MRI report notes that there has been NO detectable change from the 2008 MRI. This includes NO new lesion activity, and NO detectable brain atrophy.

Since 2008, I have made several health-related moves, including:

    o 7 months of methylprednisolone infusions (I stopped these in early 2008 because of concern over side-effects, bone thinning in particular).

    o 1 year of nightly 4.5mg LDN (I stopped these a few weeks before the 2009 CCSVI procedure at Stanford).

    o Dietary changes to stop all dairy and gluten (started in April 2008).

    o Left and right IJV stents installed at Stanford in September 2009.

    o Continued daily copaxone injections, of course.

The MRI observation of no brain atrophy really caught my attention. None of the MRIs I have ever had in my MS history (beginning in the 1980s) have ever detected brain atrophy. This is unexpected to me because of the close association between brain atrophy and MS, from its earliest stages.

I used to be a runner/hiker, and have exercised fairly consistently using free weights since the 1980s. I have been told by several doctors and neurologists that exercise is probably the most significant thing I can do to slow progression.

Two pubmed reports related to brain atrophy and exercise just caught my eye.

The first mentions that NT-3 expression is associated with brain atrophy in MS, and that neurotrophins might play a neuroprotective role:

Immune cell NT-3 expression associated with brain atrophy in MS

The second reports that voluntary exercise increases the level of neurotrophins in the system (of running rats):

Voluntary exercise increases neurotrophin-3 and its receptor

I really appreciate the ability I have to exercise, albeit with modification over the years as I get older and my MS progresses.

I return to Stanford next week for an ultrasound exam.

--Tracy
Last edited by questor on Sun Dec 04, 2011 9:20 pm, edited 5 times in total.
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Stent in left and right IJVs
SPMS
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Re: High Hopes on Pacific Coast

Postby cheerleader » Thu Dec 01, 2011 12:25 pm

Tracy-
Good to hear from you! Glad the 2 year check went well, and your stents are open and flowing...I know you had a tough time with accessory nerve damage and your shoulders. Also THRILLED to hear Stanford is doing ULTRASOUND now! Wonder if they finally had their techs train with Dr. Zamboni's team? Let me us know how that goes. I've been nagging about dopplers for awhile now :)

The issue of gray matter atrophy is going to be important. Terrific news that your brain is plump. Terry Wahls talks about brain atrophy in her new TEDx presentation.
http://www.youtube.com/watch?v=KLjgBLwH3W

I know you are doing everything in your power to maintain your health and brain, and wish you well. Keep your hopes high, and thanks for updating this thread,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: High Hopes on Pacific Coast

Postby CRHInv » Mon Dec 05, 2011 10:45 am

Tracy!
I am so glad to hear your good news too. I hope you will report back on the ultra sound results. What prompted the ultra sound exam?
I am glad to hear you are taking such good care of yourself. I am a huge believer in the diet and exercise side of all of this.
Take care and keep us posted!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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