This Is MS Multiple Sclerosis Knowledge & Support Community

Don -
Congratulations!!!
Thank you so much for posting. I am inhaling the information, learning as much as I can, as quickly as I can.
Best wishes for a speedy recovery. Blessings to you.

Hi Don,

thanks for sharing your experience.

Did you notice any symptom improvements after the procedure?
What has improved since and by how much...

thanks

adamt wrote:Hi Don,

thanks for sharing your experience.

Did you notice any symptom improvements after the procedure?
What has improved since and by how much...

thanks

Because I was diagnosed as PPMS by neurologists at Froedtert Medical Hospital, I didn't have any expectations of improvement. I just was hoping to arrest any further deterioration in my condition.

MS symptoms before stenosis intervention: hands-numbness and tingling, loss of dexterity, insensitive to heat, muscle atrophy. Hands tighten up with use. Walking is spastic, shuffling, foot dragging, tripping on objects, legs feel like "concrete pillars", balance problems. Chronic fatigue, requiring afternoon naps. Loss of hair on head; nickel-sized circles. Tinnitus in both ears; that started about 6 weeks ago. ED.

My walking was getting so bad that I had to "pysch" myself up just to walk 50 feet. I had to be very consious of where and how I made each foot movement.

However, on the day after the procedure I was amazed at the following improvements:

*the tinnitus (in both ears) was almost completely silenced
*my sense of balance was improved
*my blood pressure dropped by 38 points
*I was able to go shopping without becoming exhausted
*the dull pain at the top of my neck, which I had for twenty years, gone completely
*mentally, the brain "fog" is gone
*the daily need for the 2:00pm nap vanished
*fatigue is gone (now if I am tired it's because I actually done some physical activity)

ETA: I forgot to mention this, as it probably sounds crazy, but the top of my head feels "cooler" (temperature) after the liberation procedure.

Improved, or probably more accurately to say, restored venous circulation and drainage from the brain?

Donnchadh

Get liberated!

Donnchadh

Donnchadh wrote:
Because I was diagnosed as PPMS by neurologists at Froedtert Medical Hospital, I didn't have any expectations of improvement. I just was hoping to arrest any further deterioration in my condition.

However, on the day after the procedure I was amazed at the following improvements:

*the tinnitus (in both ears) was almost completely silenced
*my sense of balance was improved
*my blood pressure dropped by 38 points
*I was able to go shopping without becoming exhausted
*the dull pain at the top of my neck, which I had for twenty years, gone completely
*mentally, the brain "fog" is gone
*the daily need for the 2:00pm nap vanished
*fatigue is gone (now if I am tired it's because I actually done some physical activity)

Get liberated!

Donnchadh

Its posts like this that give me such hope! So happy you've enjoyed such quick benefits. Keep us updated on any changes for the better or worse.

Cheers,
John

Thanks for sharing your liberation treatment. I'm from Canada and just had the doppler ultrasound done in Montreal. The radiologist noted irregular blood flow in my left jugular vein. He said that I would need further testing to find the area where there might be an obstruction. Hearing your story gives me lots of hope and will continue to search to see what I should do next. I know Poland is $10,000 but there is a long waiting list. I would prefer to go to the US but have no idea what to do next. I'm SPMS and just want to stop the progression and like you maybe hope for some improvements. Anyone's help is appreciated. Thanks.

Donnchadh wrote:

adamt wrote:Hi Don,

thanks for sharing your experience.

Did you notice any symptom improvements after the procedure?
What has improved since and by how much...

thanks

Because I was diagnosed as PPMS by neurologists at Froedtert Medical Hospital, I didn't have any expectations of improvement. I just was hoping to arrest any further deterioration in my condition.

However, on the day after the procedure I was amazed at the following improvements:

*the tinnitus (in both ears) was almost completely silenced
*my sense of balance was improved
*my blood pressure dropped by 38 points
*I was able to go shopping without becoming exhausted
*the dull pain at the top of my neck, which I had for twenty years, gone completely
*mentally, the brain "fog" is gone
*the daily need for the 2:00pm nap vanished
*fatigue is gone (now if I am tired it's because I actually done some physical activity)

Get liberated!

Donnchadh

Thats fantastic Don well done

I plan to get tested/liberated in May.

As i can only walk about 5 metres comfortably due to poor balance/legs tire quickly, an inprovement in my mobility would give me my life back.

How much has your mobility improved since the procedure , in terms of distance/quality of walking.

e.g i can walk about 5 metres comfortably but it isnt smooth walking, its a bit stiff and robot like to keep balance.
this is indoors, outide my mobility is much worse.

by the way ive had progressive MS for 7/8 years.

thanks

Congrats!!

I can't wait to hear where in the Chicago area you went for your CCSVI. We live in the western suburbs. I was also thrilled to hear that you are feeling relief from some of your syptoms and you have had MS for quite a long time.

My husband has had MS for over 25 years (RRMS) and although he is still mobile and can work full time, he suffers greatly from fatigue. It had seemed that a majority of those getting liberated were diagnosed within the last 10 years. I wasn't sure if the procedure was helping those that have had it for a much longer time. It seems like it CAN help. Yahoo!

Keep us all posted.

...anytime you want to let me in on the secret of where you had it done you can PM me and I won't tell a soul :)

lifeisgood wrote:Congrats!!

I can't wait to hear where in the Chicago area you went for your CCSVI. We live in the western suburbs. I was also thrilled to hear that you are feeling relief from some of your syptoms and you have had MS for quite a long time.

My husband has had MS for over 25 years (RRMS) and although he is still mobile and can work full time, he suffers greatly from fatigue. It had seemed that a majority of those getting liberated were diagnosed within the last 10 years. I wasn't sure if the procedure was helping those that have had it for a much longer time. It seems like it CAN help. Yahoo!

Keep us all posted.

...anytime you want to let me in on the secret of where you had it done you can PM me and I won't tell a soul

You must realize that I am NOT a Doctor (or play one on TV, lol), so I am cautious about advising others what they should do.

I can only say, for me personally, upon looking back at the numerous things I tried over the years, the best thing I did to combat fatigue was to donate a pint of whole blood on an eight week cycle. (wink, wink; nudge, nudge) But what works for me might not work for you, but it does fit with the iron deposition theory.

I don't want to seem as touting other MS'ers because I won't reveal the name of the IR. He specifically asked me not to. I am only his second MS patient and I think he took me on because I fully understood that this is an experimental procedure and had minimal expectations for recovery.

I have received his OK fo refer another Chicago area MS patient so I am hoping he will be accepted. I hope as more CCSVI procedures are done, the IR doctors will be more willing to undertake this procedure.

If the IR is willing to take on more patients, I will post his name but can't do that right now.

Get liberated!

Donnchadh

I'm so happy for you!
your story is giving me hope!!



I got my diagnostic 1 month ago, and it's PPMS,
I have lot of spasticity in the leg, and last week I was walking with crutches(since they gave me some stuff!!)


can't wait to get liberated!!

Thats fantastic Don well done

I plan to get tested/liberated in May.

As i can only walk about 5 metres comfortably due to poor balance/legs tire quickly, an inprovement in my mobility would give me my life back.

How much has your mobility improved since the procedure , in terms of distance/quality of walking.

e.g i can walk about 5 metres comfortably but it isnt smooth walking, its a bit stiff and robot like to keep balance.
this is indoors, outide my mobility is much worse.

by the way ive had progressive MS for 7/8 years.

thanks

Well, today I was able to walk with much better balance and fluidity. In the past, whenever I started to walk, my stomach muscles would instantly tightened up. That was gone!

But please understand that my walking is still far from being normal. My leg muscles have atrophied from lack of use over the years so I am planning to start using an exercise cycle on Monday. I want to wait a few days to be sure the incision for the IR wire has healed.

I am so excited that I wore myself out a bit! I overdid a little bit, so took a short nap. But this was completely different from the past where I would get so tired (I called it "head tired") I couldn't keep my eyes open.

I now realize that I am really out of condition, and its going to take time, and exercise if I am going to fully bounce back to something close to normality. MS provokes a vicious, downward cycle. Because it was difficult to walk, I didn't. Because I didn't walk, my legs atrophied. Because they were weak, it just have it even harder to walk.

Get liberated!

Donnchadh

Donnchadh-

Giving blood every 8 weeks made that much of a difference for you? I was reading a little bit of it on some of the other forums.

My husband was under the impression that he could not donate blood - a couple years ago, he was turned downed because of his MS.

I know you can't tell where you had the procedure done. I was teasing.
There are so many good hospital in the Chicago area that it will be much easier to find someone sooner than we think.

Donnchadh-

I just called Heartland Blood Center and if a person is on Avonex - they can't donate until they stop taking it.

Well, that answers, that, I guess.

Anywhere else to go, to just have them take it and toss it?

Donnchadh wrote: *the tinnitus (in both ears) was almost completely silenced
*my sense of balance was improved
*my blood pressure dropped by 38 points
*I was able to go shopping without becoming exhausted
*the dull pain at the top of my neck, which I had for twenty years, gone completely
*mentally, the brain "fog" is gone
*the daily need for the 2:00pm nap vanished
*fatigue is gone (now if I am tired it's because I actually done some physical activity)

That is a fantastic list!!!

Mathd wrote:I'm so happy for you!
your story is giving me hope!!



I got my diagnostic 1 month ago, and it's PPMS,
I have lot of spasticity in the leg, and last week I was walking with crutches(since they gave me some stuff!!)


can't wait to get liberated!!

With the advantage of hindsight, if I had to re-do the last twenty years over again, I would take the color echo Doppler ultrasound per CCSVI protocol BEFORE I TOOK ANY MS DRUGS! And to have someone who knew what they were looking for to read them.

If it came back with no venous problems, then go the drug route. I have a growing suspicion that all they are doing, at best, is producing very expensive urine, and at worst, terrible side effects.

My opinions only; I am not a doctor.

Get liberated!

Donnchadh

I don't know about this...I think the drugs have their place, that CCSVI starts off the problem but that once the blood brain barrier is breached, there is some autoimmunity involved, as Zamboni theorized. But I have always gotten by with Copaxone, these last four years, which has fewer side effects. I will stay on it post treatment too.