FlashHack is Liberated

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

Postby Daisy3 » Wed Jul 14, 2010 4:04 pm

It worked thank you:-)

Which type of MS were you diagnosed with?
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Postby FlashHack » Wed Jul 14, 2010 4:07 pm

Shea wrote:Great report. Congratulations. I hope you have continued improvements.
Did Dr. Siskin review the CD with you? Have they discontinued the follow-up
ultra sound the day after the procedure? Please keep us updated.
I'm counting down the days until late August when I will be seeing Dr. Siskin at the clinic. All the best.

Dr. Siskin did not review the CD with me, but he did encourage me to email him with questions and updates. He went ahead and did the US right after the procedure because of our tight flight schedule (we flew in and out of Boston because of our frequent flyer miles being with Alaska Airlines). So it seems like he is doing the US still.
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Postby FlashHack » Wed Jul 14, 2010 4:10 pm

Daisy3 wrote:It worked thank you:-)

Which type of MS were you diagnosed with?

Dx RRMS 2005. Here is the list of symptoms that I am going to put in the tracking thread post:
REGULAR CURRENT SYMPTOMS
• Numbness/tingling in both hands and feet
• Lower body fatigue after about thirty minutes of working with legs/back
• Stiffness in ankles and toes
• Spasticity of arms and legs
• Constant ringing in my ears
• Lack of balance
• Weakness in legs and arms (especially right side)
• Visual disturbances like static on the TV especially after leg/back work
• Constantly clearing my throat
• Urinary urgency
• Impotence
• Slowness in starting/stopping urination
• Regular headaches that only resolve with Excedrin Migraine
• Vertigo only for the past week
TRANSIENT SYMPTOMS (came and went)
• For 3 weeks went completely numb from waste down
• Sunburn sensation on right thigh for several months
• Electric shock sensation down spinal cord followed by immobility on right side (approx. 5-10 seconds)
• Electric shock sensation induced by touching chin to chest
• Was getting up 3-4 times a night to void but this resolved with inclined bed therapy
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Postby coach » Wed Jul 14, 2010 4:16 pm

Good for you Flash. Thanks for the verse from Isaiah. I also had azygous problems. Stents instead of angio. Praying that other MS symptoms will eventually resolve. My speech improved immediately. Balance and walking are still issues, but am grateful for improved sleep, improved speech, improved bladder control. Thanks for sharing and I add my thanks to those you mentioned.
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Postby bmk1234 » Wed Jul 14, 2010 4:19 pm

Rest up and take care of yourself.
bmk
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Postby ozarkcanoer » Wed Jul 14, 2010 4:33 pm

FlashHack,

What a great story with pictures too !! I am so glad you noticed some immediate improvements. The information about how patients in general are responding in ratios of 1/3, 1/3 and 1/3 is also very interesting. I wonder what the ratio will be in a year ?? Anyway I am very happy for you and will be reading all your updates :D .

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Postby Cece » Wed Jul 14, 2010 4:41 pm

I am curious about his ratio. I'm reading it as 2/3rds are having improvements, either miraculous or minor. And 1/3rd is not experiencing improvements. But it is too soon to tell if that 1/3rd is experiencing a cessation to progression, right?

In some ways the talk of improvements blurs the focus on the possibility that an ever-downward disease like MS might actually stop with the downward.

But now that links have been fixed, I have a youtube video to watch. :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby scorpion » Wed Jul 14, 2010 4:58 pm

I am happy for you and I am especially glad you are feeling better but for the life of me I can see no way that opening up a blockage in the neck can suddenly relieve urinary symptoms. I am also noticing a pattern among SOME people who get the liberation procedure. There is a sudden relief of SOME symptoms for a month or two but eventually things return to normal. I am not sure if this is a placebo effect or simply a result of the surgery but it seems to be happening. I guess more research is the answer,,,,
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Postby FlashHack » Wed Jul 14, 2010 5:06 pm

Rokkit wrote:Also, how the heck is he able to do this in the hospital without IRB approval? I can understand his own clinic, but the hospital? I wish Dr. Sclafani could treat his patients at that hospital too. Or maybe even work with Dr. Siskin. They might as well work together as I have a feeling a high percentage of people are on both of their waiting lists anyway.

Remember, the IRB process was established by federal legislation and must be used by any institution doing research on human subjects IF THE INSTITUTION WANTS TO REMAIN ELIGIBLE TO RECEIVE FEDERAL GRANT DOLLARS. I believe it also provides relief from patient litigation as well.

So far all the proposed studies are being done are under the auspices of large university hospitals who need both. Dr. Siskin's clinic does not receive research dollars from the feds. Since his clinic is private it is up to him whether to perform the procedure and it is perfectly okay with the FDA because everything that he is using (balloons, stents, catheters, etc.) has been approved for use. The fact that he is using it for something slightly different than what it was originally approved for is call "off label use" but that is explicitly okay with the FDA.

Dr. Siskin is in "constant contact" with Dr. Sclafani and considers him a good friend.
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Postby Helevitia » Wed Jul 14, 2010 5:14 pm

FlashHack,

Thanks for posting your story. I have Transverse Myelitis. For those that don't know, TM is similar to MS in where we get an initial onset of symptoms. Generally we don't get lesions in our brain but on our spine and usually only one, or in my case, no lesions. Most of us recover to some degree, 1/3 recover mostly or 100%, 1/3 recover some, and another 1/3 don't recover at all. I am fortunate enough to be one of the "walking wounded".

I was in a wheelchair for 4 months, then to a cane for another 4-6 months. My residual symptoms include leg burning(nerve pain), bladder and bowel problems, balance issues, spasicity,slight clonus, weak calves and some other minor issues here and there. I get exacerbations from time to time, but nothing too serious. Luckily I have lived a decent life with minimal TM symptoms and I still work full time. It has been 17 years as of July 6th.

A percentage(I don't the exact number, I want to say 20%, but I don't know) of people with TM go on to have MS.

So your story is extremely interesting to me because you talk about having a significant blockage in the azygos vein and your biggest lesions are in your spine. All of your symptoms you describe are the major symptoms for TM sufferers.

The general thinking is that the Liberation Treatment might not help TMers because we don't have brain lesions and fixing the jugular veins won't do anything, but with the azygos vein, it gives me renewed hope. As far as I know, only one person who was diagnosed to have TM has gotten the Liberation Treatment and she seems to be doing spectacular. Thanks for posting your findings and thoughts. I have posted this information over at the TM forums for others to see.

I have been lurking around this site for several weeks after I found out about the liberation treatment. It's been amazing to read about what has been going on. It would be even more amazing to find out at some point that this could possibly help us TMers too. It would be awesome to be able to go poop normally again :D I would also love to get rid of the burning pain and stop taking medication. Anyhoo, I will just sit and watch for a while and see where all of this goes.

I wish you all great recovery, thank you...

Dave
Last edited by Helevitia on Wed Jul 14, 2010 5:15 pm, edited 1 time in total.
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Postby FlashHack » Wed Jul 14, 2010 5:15 pm

Cece wrote:I am curious about his ratio. I'm reading it as 2/3rds are having improvements, either miraculous or minor. And 1/3rd is not experiencing improvements. But it is too soon to tell if that 1/3rd is experiencing a cessation to progression, right?

In some ways the talk of improvements blurs the focus on the possibility that an ever-downward disease like MS might actually stop with the downward.

But now that links have been fixed, I have a youtube video to watch. :)
I think this has been the case from Zamboni's first paper. Those that have had the disease the longest and are PPMS and SPMS seem to have the least in the way of "improvements." Zamboni did state that the only patients in his original study that had relapses were those that re-stenosed so this distinction has already been made regarding improvements as apposed to relapses.
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Postby FlashHack » Wed Jul 14, 2010 5:18 pm

scorpion wrote:I am happy for you and I am especially glad you are feeling better but for the life of me I can see no way that opening up a blockage in the neck can suddenly relieve urinary symptoms. I am also noticing a pattern among SOME people who get the liberation procedure. There is a sudden relief of SOME symptoms for a month or two but eventually things return to normal. I am not sure if this is a placebo effect or simply a result of the surgery but it seems to be happening. I guess more research is the answer,,,,
The relationship between bladder issues and venous problems was reference by Dr. Dake in his presentation to the IR conference this Spring as being well established.
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Postby ikulo » Wed Jul 14, 2010 5:24 pm

FlashHack, thank you for sharing your experiences! It is invaluable to those of us hoping to be treated soon.

Helevitia - welcome to TiMS.
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Postby CCSVIhusband » Wed Jul 14, 2010 5:38 pm

FlashHack wrote:
scorpion wrote:I am happy for you and I am especially glad you are feeling better but for the life of me I can see no way that opening up a blockage in the neck can suddenly relieve urinary symptoms. I am also noticing a pattern among SOME people who get the liberation procedure. There is a sudden relief of SOME symptoms for a month or two but eventually things return to normal. I am not sure if this is a placebo effect or simply a result of the surgery but it seems to be happening. I guess more research is the answer,,,,
The relationship between bladder issues and venous problems was reference by Dr. Dake in his presentation to the IR conference this Spring as being well established.


Sure has flash. Veins that surround the bladder and our outlets of urine are all interrelated to the azygous/renal/iliac/ivc veins ...

Some people just don't WANT to understand why it (CCSVI) WORKS ... it's not hard to follow the symptoms/veins involved if you WANT TO LEARN though.

PS ... the azygous isn't in the neck ... just an FYI to those who don't WANT to learn.
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Postby cheerleader » Wed Jul 14, 2010 5:38 pm

FlashHack wrote:
scorpion wrote:I am happy for you and I am especially glad you are feeling better but for the life of me I can see no way that opening up a blockage in the neck can suddenly relieve urinary symptoms. I am also noticing a pattern among SOME people who get the liberation procedure. There is a sudden relief of SOME symptoms for a month or two but eventually things return to normal. I am not sure if this is a placebo effect or simply a result of the surgery but it seems to be happening. I guess more research is the answer,,,,
The relationship between bladder issues and venous problems was reference by Dr. Dake in his presentation to the IR conference this Spring as being well established.


Yup. It's true. Dr. Dake, Jeff and I have discussed this at length. In some cases, bladder issues are due to venous insufficiency. See study below...neurogenic bladder is related to venous outflow creating hypoxia.

Hemodynamic changes of the cerebral vessels with affection of the venous outflow may cause hypoxia of the hypothalamo-hypophyseal structures with emergence of symptom complex of vegetovascular dystonia and marked neurogenic dysfunction of the bladder.

http://www.ncbi.nlm.nih.gov/pubmed/9412015

(husband, Jeff didn't have lower venous involvement. Bladder can be affected by cerebral issues)
As far as improvements leaving....Jeff no longer has urgent bladder. He sleeps all night, no need to go (he used to go 2-3 times) He's 14 months out. No fatigue, no heat intolerance, no spasms, and still improving.
Results may vary, but these results are real.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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