Gibbledygook's Stents

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

Postby ErikaSlovakia » Fri Aug 14, 2009 8:19 am

gibbledygook wrote:...so maybe the same is happening with the spasms.

Hi!
Have you ever tried LDN? http://www.msrc.co.uk/index.cfm/fuseact ... pageid/651
I have never had spasms (lucky me), but I had really big problem with fatigue. I started with LDN last November. It is much better. As you know, I was even able to travel to Poland by myself.
I order it here: https://secure-medical-pages.co.uk/emed ... r_form.php
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 patientx » Fri Aug 14, 2009 9:02 am

CureIous wrote:Uh, I thought that's why we are in a study. With a premiere vascular surgeon. To my knowledge the cause of MS isn't up for debate here, because nobody knows. Think Cheer did well to post what we do, and don't know at this point. At some point, and I think in the not too distant future, a tipping point will be reached here, and this thing will die an early death (bad analogy, apologies), or multiply exponentially under it's own power, after that the academics can furiously "debate". I guess that's the beauty of peer review eh?

Mark.


Is what Dr. Dake doing considered a study? I thought he was trying the stent procedure on those who wanted to give it a shot.
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Postby patientx » Fri Aug 14, 2009 9:08 am

ErikaSlovakia wrote:At the moment I do not care if it has something to do with MS or not.
I just want it helps my symptoms. I also understand if somebody wants to wait for more trials.

In my case the fact is I have stenosis and reflux. I just want somebody to fix it. If I break my leg I also want some doctors to fix it. I feel better without broken leg.


But how do you know the stenosis are causing any symptoms? And how do you know that installing stents will make you feel better?

I guess the point I was trying to make, is that several posts have stated or implied that it's a good idea to open the veins, whether this has anything to do with MS or not. I don't know if that is correct. But I definitely can understand wanting to try anything to stop the MS from progressing.

And I give much credit to those who have tried this procedure. It took guts, and will help with advancing the theory.
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Postby ErikaSlovakia » Fri Aug 14, 2009 9:23 am

Hi patientx,
well, somebody must start it also here in Slovakia and somebody must be the first even if it is risky. If doctors do not have the patients how can they study? If I do not try I will never know. I do not have anybody who would help me or who would take care of me. I can not just wait. I do not get any treatment.
Erika
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 patientx » Fri Aug 14, 2009 10:01 am

ErikaSlovakia wrote:Hi patientx,
well, somebody must start it also here in Slovakia and somebody must be the first even if it is risky. If doctors do not have the patients how can they study? If I do not try I will never know. I do not have anybody who would help me or who would take care of me. I can not just wait. I do not get any treatment.
Erika


I agree with these statements completely. You are brave for trying this. I hope that you find someone to perform the procedure, and that it works well for you.
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Postby cheerleader » Fri Aug 14, 2009 10:05 am

And with that...
I ask that we return this thread to Alex so that she may keep us updated on her situation.
Thanks!
cheer
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Postby ErikaSlovakia » Fri Aug 14, 2009 10:32 am

patientx wrote: You are brave for trying this. I hope that you find someone to perform the procedure, and that it works well for you.

Thank you, patientx!
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 turtle_fi » Sun Aug 16, 2009 7:46 am

patientx wrote:But how do you know the stenosis are causing any symptoms? And how do you know that installing stents will make you feel better?


stenosis is quite well known, but not in those veins we're discussing here. with my limited medical knowledge, i have understood that vein problems in legs are quite common.

vein insufficiency in legs cause lesions in legs. so why wouldn't vein insufficiency in neck cause lesions in brain?
can this be so simple that non-medical person like me can understand this too? installing stents to leg veins is to my understanding nowadays pretty standard procedure.
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Postby gibbledygook » Sat Aug 29, 2009 8:45 am

Here's my latest email to Prof Dake:

I have been trying to put together a more informative description of how I am doing but ended up with a lot of waffle. Instead I’ve here tried to quantify numerically the neurological changes since the operation.

If my symptoms at worst have been 100% which would be an EDSS of 6.5, these are my percentages now:

My bladder is better in 4 ways; it is less urgent, it is easier to void manually, it takes longer to require voiding, I am able to void partially using the normal sphincter muscles which now contract/relax about three times naturally on each toilet trip. More urine is voided on each of these sphincter contractions/relaxations. Previously the bladder muscles would relax just once and not for long so I could only void partially using manual massage. I am now sometimes forgetting to prioritize the need to visit the toilet at EVERY opportunity and spend less of my time worrying about the toilet. My bladder is now about 50% of where it was at worst.

My spasticity is better in 3 ways. I suffer much less stiffness in the morning on the right side of my body; if I was touched at all whilst supine, the whole of the right leg and the torso and right arm would stiffen to the extent that the right knee would bend and the right hand rise up; now when I am touched whilst supine the right leg and torso stiffen but neither the leg nor arm rise or only a little. Also I suffer much, much less stiffness on standing after having been sat down for a while; there is much more flexibility in the foot and leg. The spasticity is about 60% of where it was.

My night spasms are better in 2 ways; I am still suffering from spasms but they are controllable without medicine and are much less severe than before the operation. When they arise I am able to stop them by stretching the muscles for a few seconds and then crossing the limbs so that a spasming foot is weighed down by the other leg. The improvement makes such a dramatic difference to my overall sense of well-being that it merits a 50% but they have been fairly persistent since a few weeks ago so realistically maybe they are still 60% of at worst.
A different sort of spasm which has in the past affected my shoulders has been much, much better. The spasms are much less vigorous and less frequent. This was a relatively recent symptom and is now about 10% of its at worst presentation.

My movement induced phosphenes are, I think, still around but are at least 2 times better since if I notice any of these bright flashes of light they are definitely much, much smaller than they used to be and as a consequence I am noticing them far less frequently. These must be 20% of at worst phosphenes which have in the past been very noticeable.

The sensory deficit in my left leg is better in 3 different ways. The burning pain used to be a roving pain that would move all over the sole and front part of the left leg. The intensity of pain used to on occasion be at least a 7 out of 10 (10=worst pain imaginable). The pain is now far more subdued, maybe at worst a 2. The pain is confined to a much smaller area and doesn’t move about so much and is quieter. The sensory deficit is now about 40% of at worst.
The sensory deficit which has in the past affected my face and upper torso has been very inactive and is perhaps 20% of its at worst presentation.
This symptom was a relatively new symptom.
The sensory deficit which has affected my right hand has been changing a bit over the last few months. When the night spasms reemerged a few weeks ago so did an odd cold sensation which has now gone. Tingling in the tips of the fingers and thumb have also come and gone over the last months. The numbness remains. Overall the hand is about 50% of its worst presentation.

My swallowing difficulties have vanished and I haven’t noticed any motor dysfunction affecting the swallowing process since the operation. This was one of my very first symptoms back in 2001. This is a 0% of its at worst.

My walking feels better. I have just managed 900m with a cane whilst needing the toilet. Needing the toilet and walking is a big no no but I managed much better than I had thought although didn’t quite make the toilet. My walking has been my worst disability and at times I have barely managed 5 meters. This year my record is 900m before the operation and so I can’t say that my walking has shown any definite improvement. It is however stable at a good level. It is about 50% of its at worst presentation.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Rokkit » Sat Aug 29, 2009 9:04 am

Alex, this sounds very encouraging! I hope it is giving your spirits a lift, and I really hope you continue to see improvements. It's so hard to quantify changes (good or bad) when they occur so slowly, but it sounds like your improvements are coming way faster than your decline did, which is again very, very encouraging.

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Postby gibbledygook » Sat Aug 29, 2009 9:32 am

Thanks Rokkit. I actually forgot to write how bad I was immediately prior to the stent placement. My at worst presentation could have been at any time over the last 5 years. Here's the amended email to Dake:

I think I missed any proper timing information so that you can assess the impact of the stents. Accordingly I have amended the email, I just sent you.

If my symptoms at worst have been 100% which would be an EDSS of 6.5, these are my percentages now:

My bladder is better in 4 ways; it is less urgent, it is easier to void manually, it takes longer to require voiding, I am able to void partially using the normal sphincter muscles which now contract/relax about three times naturally on each toilet trip. More urine is voided on each of these sphincter contractions/relaxations. Previously the bladder muscles would relax just once and not for long so I could only void partially using manual massage. I am now sometimes forgetting to prioritize the need to visit the toilet at EVERY opportunity and spend less of my time worrying about the toilet. My bladder is now about 50% of where it was at worst. Immediately prior to the operation my bladder was 100% ie at worst.

My spasticity is better in 3 ways. I suffer much less stiffness in the morning on the right side of my body; if I was touched at all whilst supine, the whole of the right leg and the torso and right arm would stiffen to the extent that the right knee would bend and the right hand rise up; now when I am touched whilst supine the right leg and torso stiffen but neither the leg nor arm rise or only a little. Also I suffer much, much less stiffness on standing after having been sat down for a while; there is much more flexibility in the foot and leg. The spasticity is about 60% of where it was. Immediately prior to the operation the spasticity was 90%.

My night spasms are better in 2 ways; I am still suffering from spasms but they are controllable without medicine and are much less severe than before the operation. When they arise I am able to stop them by stretching the muscles for a few seconds and then crossing the limbs so that a spasming foot is weighed down by the other leg. The improvement makes such a dramatic difference to my overall sense of well-being that it merits a 50% but they have been fairly persistent since a few weeks ago so realistically maybe they are still 60% of at worst. Prior to the operation the spasms were at 100%. At worst.
A different sort of spasm which has in the past affected my shoulders has been much, much better. The spasms are much less vigorous and less frequent. This was a relatively recent symptom and is now about 10% of its at worst presentation. Immediately prior to the operation, this spasms were at 100% or at worst.

My movement induced phosphenes are, I think, still around but are at least 2 times better since if I notice any of these bright flashes of light they are definitely much, much smaller than they used to be and as a consequence I am noticing them far less frequently. These must be 20% of at worst phosphenes which have in the past been very noticeable. Immediately prior to the operation these were at perhaps 60%.

The sensory deficit in my left leg is better in 3 different ways. The burning pain used to be a roving pain that would move all over the sole and front part of the left leg. The intensity of pain used to on occasion be at least a 7 out of 10 (10=worst pain imaginable). The pain is now far more subdued, maybe at worst a 2. The pain is confined to a much smaller area and doesn’t move about so much and is quieter. The sensory deficit is now about 40% of at worst. Immediately before the operation this deficit was at about 70% of worst.

The sensory deficit which has in the past affected my face and upper torso has been very inactive and is perhaps 20% of its at worst presentation. Immediately prior to the operation this symptom wasn’t at its very worst so maybe before the op I was at 60%.
This symptom was a relatively new symptom.

The sensory deficit which has affected my right hand has been changing a bit over the last few months. When the night spasms reemerged a few weeks ago so did an odd cold sensation which has now gone. Tingling in the tips of the fingers and thumb have also come and gone over the last months. The numbness remains. Overall the hand is about 50% of its worst presentation. Immediately prior to the operation this symptom was also at about 50% of its worst moments.

My swallowing difficulties have vanished and I haven’t noticed any motor dysfunction affecting the swallowing process since the operation. This was one of my very first symptoms back in 2001. This is a 0% of its at worst. Again immediately prior to the operation this symptom wasn’t strong. Over the last year it’s been in the region of 30% of the worst which was in the early days.

My walking feels better. I have just managed 900m with a cane whilst needing the toilet. Needing the toilet and walking is a big no no but I managed much better than I had thought although didn’t quite make the toilet. My walking has been my worst disability and at times I have barely managed 5 meters. This year my record is 900m before the operation and so I can’t say that my walking has shown any definite improvement. It is however stable at a good level. It is about 50% of its at worst presentation. Immediately prior to the operation my walking was maybe at 60% of its at worst presentation.


For me it is easier remembering my worst moments. I think that this above is about as accurate as I can get it.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Sharon » Sat Aug 29, 2009 1:10 pm

Alex, great post. I think the detail is important for the readers and most importantly you. We are going to start forgetting where we were prior to the procedure once we get used to our "new" selves.

You really have had some remarkable improvements...and it has just been a few months. Congratulations.

My movement induced phosphenes are, I think, still around but are at least 2 times better since if I notice any of these bright flashes of light they are definitely much, much smaller than they used to be and as a consequence I am noticing them far less frequently.

This is interesting to me...I have the "flashers"--something that can also come with age. Now that I think about it, mine have been much less...I am going to have to pay attention. I never had optic neuritis, so mine may still be related to age :cry:

Sharon
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Postby MaggieMae » Fri Sep 18, 2009 6:22 am

Gibbledygook,

We haven't heard from you for a few weeks. How are you doing?
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Postby mrhodes40 » Fri Sep 18, 2009 8:13 am

And how is your shoulder, can you play the piano again yet?
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
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Postby gibbledygook » Sun Sep 20, 2009 4:35 am

I have been away from the site, so apologies. I have had a week long bout of cystitis and am now on a rather unpleasant antibiotic called trimethoprim 100mg 2x daily. Since getting this infection of the bladder my bladder function has deteriorated (but this happens to normal people anyway) and my night spasms have been worse and were much much worse the night I started the antibiotic. My leg has also been stiffer this last week.
I think the blood brain barrier is still highly permeable despite the alterations in blood flow. Thus anything inflammatory is likely to cause a renewal of symptoms. I'm off the antibiotics soon so will update my email to Prof Dake in a few weeks. I expect that the symptoms will improve gradually after coming off this antibiotic which, I note, causes tremors in AIDS patients.



1: Pharmacotherapy. 1999 Dec;19(12):1456-8.LinksTrimethoprim-sulfamethoxazole-induced tremor in an immunocompetent patients.
Patterson RG, Couchenour RL.
Saint Louis University Belleville Family Practice, Missouri, USA.

Trimethoprim-sulfamethoxazole (TMP-SMX) is a widely administered antibiotic that is well tolerated by most patients. Hypersensitivity reactions and gastrointestinal intolerance are the most common adverse events associated with it. Central nervous system adverse effects such as tremors are less common and occur primarily in patients with acquired immune deficiency syndrome. A 29-year-old immunocompetent man developed a tremor while taking TMP-SMX. The tremor resolved within 2 days after the drug was discontinued.

PMID: 10600097 [PubMed - indexed for MEDLINE


The CCSVI section is fantastic!!! So many are posting. Wow.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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