Can the people who have been Liberated please go to Dr Scalafanis request for help below on this thread and there is also help needed to choose and or design tests for proving the outcomes of the treatment in trails.
To date the methods of assessing MS patients don't really apply to the work being done with CCSVI treatment outcome assessment. There are things that were evident for liberatees immediately which will be helpful in designing comparative tests to show treatment benefits. The current tests like EDS are not subtle enough and don't list the benefits of treatment.
Can you please add your experience to further the work of Dr Sclafani and others for the benefit of us all.
"LIBERATED", please help on Dr Sclafanis thread
"LIBERATED", please help on Dr Sclafanis thread
Last edited by NZer1 on Thu May 13, 2010 12:39 am, edited 1 time in total.
I'm Liberated
Hi. OK I was Liberated Oct 2009.
I have a long story. Do you want my EDSS score that went from 5.5 to 0.0 today?
Dr. Sclafani's thread is long and I have not read all of it.
I have posted on the sticky for Liberators.
Just want to make sure I post what you want to have posted.
Rose ;)
ps. As of today, May 12, 2010, I still do not have one of the many MS symptoms I had for the 10 years before CCSVI diagnosis/ and treatment.
I have 2 stents and 1 angio. I am MS Free.
I have a long story. Do you want my EDSS score that went from 5.5 to 0.0 today?
Dr. Sclafani's thread is long and I have not read all of it.
I have posted on the sticky for Liberators.
Just want to make sure I post what you want to have posted.
Rose ;)
ps. As of today, May 12, 2010, I still do not have one of the many MS symptoms I had for the 10 years before CCSVI diagnosis/ and treatment.
I have 2 stents and 1 angio. I am MS Free.
Re: I'm Liberated
Rose2 wrote:Hi. OK I was Liberated Oct 2009.
I have a long story. Do you want my EDSS score that went from 5.5 to 0.0 today?
Dr. Sclafani's thread is long and I have not read all of it.
I have posted on the sticky for Liberators.
Just want to make sure I post what you want to have posted.
Rose ;)
ps. As of today, May 12, 2010, I still do not have one of the many MS symptoms I had for the 10 years before CCSVI diagnosis/ and treatment.
I have 2 stents and 1 angio. I am MS Free.
I don't know about anyone else, but I want to know!!
Please tell us the symptoms you had, and if you have them now.
Thats' just for me though....
-
prairiegirl
- Family Elder
- Posts: 228
- Joined: Fri Feb 05, 2010 3:00 pm
Hey NZer1, There is actually a thread already started (posted below by fogdweller) re "How can we design a trial to test efficacy of the surgery?" Maybe people want to post their ideas there? I agree that there is much work to be done re assessments and treatment results. Exciting times...
Rose2, always love to hear your beautiful story!
Rose2, always love to hear your beautiful story!
Daisy 3,
Nice to meet you! I am more than happy to share my story. I realize now there are probably alot of new readers here from the smaller group we were back in the fall of 2009.
I had posted all of my 'stuff' then and figured you were all sick of hearing from me. But if there is a need for this info again, I am thrilled to share.
You can also search Rose2 and find what I have written.
I was diagnosed 2001 after a huge, fast attack that took 2 months and ended me up in ICU. Completely paralyzed. Egg size lesion on my brainstem.
I was walking 7 miles a day before that fast, short initial attack/progression. I was never in LimoLand and for that I am grateful for the speed and ferocity that was my MS onset.
Diagnosed in the hospital I was released after 8 days and the Solumedrol treament and all the tests, MRIs, MRVs, Lumbar puncture, Evoked Potential, all of it.
So I went home and continued to get stronger. Never alot stronger. At that point I could not walk out to the corner. I started the Avonex for fear of the Unknown. I was on Avonex for 6 years.
I continued to suffer with Fatigue, pain in different areas every day, Huge Cognitive Issues, balance, speech, thought, HEAT SENSITIVITY, spasms, you name it I had it.
I had a huge butcher knife pain in my upper mid Left back near my spine.
kind of near the end of the shoulder blade. That Never left me.
After a few years I went back to my health care job for about 4 hours a day for about a year. I missed my friends and patients so much.
I did that for a while, but started wtih tremor in hand that prohibitted me from working. So I became Permanently Disabled then found out that Medicare didn't kick in for 2 years after you are declared Disabled (in US).
So, $ out of pocket for the Avonex. Huge financial difficulty without med. insurance.
I tried to do bookwork on my laptop for my husband but my CogFog prohibitted that. and my fatigue.
My social life STOPPED. There was no way I could make plans or even wanted to make plans. We had a very active social life before.
At the beginning my boys were just out of high school. There is no good time for a mother to have this. None.
My symptoms became my life. I hated complaining so I did not and tried to suffer in silence. I spent most of those 10 years in my bedroom/bed.
I was house bound. On a bad day I used the walker in the house. On good days I would go with my husband to the grocery store and ride in the cart, but would end up so dizzy trying to look at stuff I had to leave.
I had to eat ice constantly. I was never without a cup of ice to chew on, or my head would get hot.
I never had an optic neuritis attack but had my eyeglasses RX changed/stonger frequently.
I FELT LIKE CRAP FOR 10 YEARS. I had at least 10 bottles of meds by my bed. Sept. 2009 I was shopping for a Rollator and was on an MS chat site to get recommendations when I saw a note about CCSVI. It directed me to this site. I read all about CCSVI. It made total sense. I had all of my personal medical hsitory/ info into Dr. Dake the next day and was scheduled for Oct. 2009.
In Oct. they did the MRI/MRV screening, found 3 area of obstruction and the next morning, with Venography (to find the Azygos) I was Liberated with one stent in high jugular, one stent in Azygos and one angioplasty in Jugular just sub clavical area.
I won't sugar coat this. I had a bad head ache for about 2 weeks from the Upper stent. Big Deal. It went away and I have never had another headache.
Heat Sens= Gone immediately. Woke up shivering and have never wanted ice to chew again.
Cog Fog= Gone immediately. Sure I was dopey on the pain meds, but I knew it wasn't Cog Fog and once no more meds, no more FOG. Cog Fog was alway my biggest complaint. It was more debilitating mentally for me than any of the other more tangible physical symptoms.
Strength= Better then and now better everyday. I am now walking 2 miles and working up. MS has taken its toll on me and I won't be 48 again as I was when diagnosed but I feel like 30!
Back Pain= GONE. The butcher knife in my mid/upper left back never appeared or returned after Liberation. (My belief is that this pain was involved with Liberation of the Azygos, but that is my uneducated conclusion).
Leg Pain and Spasms= Never again.
Postural Strength= Awesome and again better daily. I can go to the mall walk for hours and never look for the place to sit down. And you know what that means.
Computer Work= I can knock out a week's worth in one day. and collate, and file, reconcile, do financials, etc.
Driving!= Yep! Back on the road after being driven around for 10 years cuz I was too weak and dizzy.
Stamina= Up at 6:00 am every morning, carpool at 7:00am and stay up for David Letterman!
Desire to plan and go to all parties is back. I knew I was better when I WANTED to go again.
I travel without the wheelchair and special services to the plane!
I park at the back of the parking lot to get more excercise!
Sorry if this is so disjointed. Please aske me anything you want.
I was not wheelchair dependent before Liberation but I sure used one whenever possible and didn't go places without one.
I was kept at the RRMS diagnosis. But was not functioning at the level many MSers with RRMS do. I could not work, etc.
I had exacerbations that were treated wtih out pt IV Solumedrol.
I had 2 in 2009. I have not had one since Liberation but then again, I do not have one MS symptom since Liberation.
I know it sounds like a Fairy Tale. The honest story here is that I searched out the CCSVI and treatment ONLY to stop my progression. I NEVER expected to improve. EVER. Improvement to me was not in idea or a hope. I only wanted to stop my MS progression if possible. And because the thought of healing MS symptoms is never discussed, right? Just the progression and the mindset of gearing up for it.
But, please know that it has worked for me.
My family and friends are my strongest spokesmen. They are still in shock as they watch me continue to improve. ;)
OK, I am sorry this is so long.
Sincerely, Rose
Nice to meet you! I am more than happy to share my story. I realize now there are probably alot of new readers here from the smaller group we were back in the fall of 2009.
I had posted all of my 'stuff' then and figured you were all sick of hearing from me. But if there is a need for this info again, I am thrilled to share.
You can also search Rose2 and find what I have written.
I was diagnosed 2001 after a huge, fast attack that took 2 months and ended me up in ICU. Completely paralyzed. Egg size lesion on my brainstem.
I was walking 7 miles a day before that fast, short initial attack/progression. I was never in LimoLand and for that I am grateful for the speed and ferocity that was my MS onset.
Diagnosed in the hospital I was released after 8 days and the Solumedrol treament and all the tests, MRIs, MRVs, Lumbar puncture, Evoked Potential, all of it.
So I went home and continued to get stronger. Never alot stronger. At that point I could not walk out to the corner. I started the Avonex for fear of the Unknown. I was on Avonex for 6 years.
I continued to suffer with Fatigue, pain in different areas every day, Huge Cognitive Issues, balance, speech, thought, HEAT SENSITIVITY, spasms, you name it I had it.
I had a huge butcher knife pain in my upper mid Left back near my spine.
kind of near the end of the shoulder blade. That Never left me.
After a few years I went back to my health care job for about 4 hours a day for about a year. I missed my friends and patients so much.
I did that for a while, but started wtih tremor in hand that prohibitted me from working. So I became Permanently Disabled then found out that Medicare didn't kick in for 2 years after you are declared Disabled (in US).
So, $ out of pocket for the Avonex. Huge financial difficulty without med. insurance.
I tried to do bookwork on my laptop for my husband but my CogFog prohibitted that. and my fatigue.
My social life STOPPED. There was no way I could make plans or even wanted to make plans. We had a very active social life before.
At the beginning my boys were just out of high school. There is no good time for a mother to have this. None.
My symptoms became my life. I hated complaining so I did not and tried to suffer in silence. I spent most of those 10 years in my bedroom/bed.
I was house bound. On a bad day I used the walker in the house. On good days I would go with my husband to the grocery store and ride in the cart, but would end up so dizzy trying to look at stuff I had to leave.
I had to eat ice constantly. I was never without a cup of ice to chew on, or my head would get hot.
I never had an optic neuritis attack but had my eyeglasses RX changed/stonger frequently.
I FELT LIKE CRAP FOR 10 YEARS. I had at least 10 bottles of meds by my bed. Sept. 2009 I was shopping for a Rollator and was on an MS chat site to get recommendations when I saw a note about CCSVI. It directed me to this site. I read all about CCSVI. It made total sense. I had all of my personal medical hsitory/ info into Dr. Dake the next day and was scheduled for Oct. 2009.
In Oct. they did the MRI/MRV screening, found 3 area of obstruction and the next morning, with Venography (to find the Azygos) I was Liberated with one stent in high jugular, one stent in Azygos and one angioplasty in Jugular just sub clavical area.
I won't sugar coat this. I had a bad head ache for about 2 weeks from the Upper stent. Big Deal. It went away and I have never had another headache.
Heat Sens= Gone immediately. Woke up shivering and have never wanted ice to chew again.
Cog Fog= Gone immediately. Sure I was dopey on the pain meds, but I knew it wasn't Cog Fog and once no more meds, no more FOG. Cog Fog was alway my biggest complaint. It was more debilitating mentally for me than any of the other more tangible physical symptoms.
Strength= Better then and now better everyday. I am now walking 2 miles and working up. MS has taken its toll on me and I won't be 48 again as I was when diagnosed but I feel like 30!
Back Pain= GONE. The butcher knife in my mid/upper left back never appeared or returned after Liberation. (My belief is that this pain was involved with Liberation of the Azygos, but that is my uneducated conclusion).
Leg Pain and Spasms= Never again.
Postural Strength= Awesome and again better daily. I can go to the mall walk for hours and never look for the place to sit down. And you know what that means.
Computer Work= I can knock out a week's worth in one day. and collate, and file, reconcile, do financials, etc.
Driving!= Yep! Back on the road after being driven around for 10 years cuz I was too weak and dizzy.
Stamina= Up at 6:00 am every morning, carpool at 7:00am and stay up for David Letterman!
Desire to plan and go to all parties is back. I knew I was better when I WANTED to go again.
I travel without the wheelchair and special services to the plane!
I park at the back of the parking lot to get more excercise!
Sorry if this is so disjointed. Please aske me anything you want.
I was not wheelchair dependent before Liberation but I sure used one whenever possible and didn't go places without one.
I was kept at the RRMS diagnosis. But was not functioning at the level many MSers with RRMS do. I could not work, etc.
I had exacerbations that were treated wtih out pt IV Solumedrol.
I had 2 in 2009. I have not had one since Liberation but then again, I do not have one MS symptom since Liberation.
I know it sounds like a Fairy Tale. The honest story here is that I searched out the CCSVI and treatment ONLY to stop my progression. I NEVER expected to improve. EVER. Improvement to me was not in idea or a hope. I only wanted to stop my MS progression if possible. And because the thought of healing MS symptoms is never discussed, right? Just the progression and the mindset of gearing up for it.
But, please know that it has worked for me.
My family and friends are my strongest spokesmen. They are still in shock as they watch me continue to improve. ;)
OK, I am sorry this is so long.
Sincerely, Rose
-
ndwannabe
- Family Elder
- Posts: 290
- Joined: Sat Jan 02, 2010 3:00 pm
- Location: SF Bay Area, CA
- Contact:
This one is not Dr. Sclafani's thread. This one answers the OPbestadmom wrote:Why are you hijacking Dr. Sclafani's thread?I go there to get taught the science behind your questions, not to read your notions of how to design a trial.
Or was there something going on on the actual Dr.S thread? Better go check.Can you please add your experience to further the work of Dr Sclafani and others for the benefit of us all.
To Rose:
All that benefit?!! That's great!!!
Loved reading your story:-)
My concern is that not all people have the same turn around of symptoms and getting better. Worries me as my husband has been put on a waiting list in Poland..he is newly diagnosed and suffers from imbalance,nystagamus and fatigue.
Oh well, here's to hoping!!!
All that benefit?!! That's great!!!
Loved reading your story:-)
My concern is that not all people have the same turn around of symptoms and getting better. Worries me as my husband has been put on a waiting list in Poland..he is newly diagnosed and suffers from imbalance,nystagamus and fatigue.
Oh well, here's to hoping!!!
NZer1 started this thread by asking for people to post the liberation experience in Dr. Sclafani's thread, which has turned into a free for all of patients hijacking the conversation in the past two days.
We have a tracking thread and I'd prefer to not sort thru pages of errant posts to get the info the topic is supposed to be about.
We have a tracking thread and I'd prefer to not sort thru pages of errant posts to get the info the topic is supposed to be about.