How are you doing since treatment??

[DougL]

I'd like to hear a bit about your story if you don't mind.
Bruce.

sure. hope you don't mind if i post it here.

D has had MS for over 27 years. in the past couple years, she has started to progress from RRMS to SPMS.

Nov 2010 she had her first treatment in Germany. so much pain on the left that doc had to stop. improvements were nothing short of a miracle. she left her cain in germany.

Best example was a couple days after treatment she was on a train with a friend. missed stop and conductor just told them get off. so here is a person with MS, lost in the middle of Europe in the middle of the night. before treatment this would have created a major attack. this time she was calming her "normal" friend.

When she got back to Canada, she walked up the hill at her Dad's. he just stood in the driveway crying. "i haven't seen D walk like that in 10 years".

unfortunately, it didn't last more than 6 months or so.

June 2011, Doppler in Toronto showed major reflux in right jug. possible 2 other signs of CCSVI but inconclusive.

now that I was in her life, i was able to research CCSVI and found Dr. S in Brooklyn. the advancements in treament/detection over the last year are amazing. so off we went.

i cannot say enough about Dr. S so i won't try. he is on this forum and i am sure you can find lots of possitive experiences.

what was found with D.

left jug was surrounded by bone and was as small as 4 mm in places. nothing can be done (this bone is what caused the pain in Germany). he did ballon the valve to 6mm. Right jug had to carry the load so it grew to over 20 mm in places (i think 26 or 24 at one point). when Dr. S put the scope in the right side, D's face lit up like a tomatoe. Block the right jug and there was almost zero blood flow. this was also ballooned at the valve.

Found the azygos was 100% blocked. valve had grown shut (guess is this was from birth). almost gave up because he couldn't get thru but Dr. S doesn't quit easily and does not deal with failure very well. he got thru and flow was confirmed. i forget exact numbers but this is close - normal treatment is between 2 and 2.5 hours. D was on the table for over 5 hours. THANK YOU DR. SCLAFANI.

one more plug for Dr. S and then i will stop. without the use of IVUS, i think most of the above details would still be unknown.

The first thing i noticed was her hands were warm. never felt her hands warm before. on the drive from clinic to hotel, D said (as she looked at shop signs) and i quote "Wow the colors are so bright and clear". i noticed a major improvement in mental abilities. more alert, able to handle more than one thing at a time.

the worse part is she felt her legs and walking did not improve. i disagree but who am i to judge. i think someone here mentioned denial. most of her complaints now are not related to MS (knee pain due to arthritis)

jump ahead to three months post treament number 2.

we went to an event a few weeks ago. she had to stand for one hour watching a fashion show. she did better than i did. she followed that by walking around for 3 hours - no breaks, no sitdown, no nothing but a few sips of water.

the other day at the house she was dragging her right foot. she always does this. i told her stop, lift your leg. she started marching like you see on TV - knee to the chest. "wow" she said. " I didn't know i could do that".

the last couple days have been the most amazing. she is literally walking just like people without MS. no weakness, no numbness and no balance issues. and this was immediately following an episode of stress that should have put her in bed for a week.

i strongly believe with her blood flow close to normal, damage is no longer happening to her brain and dare i say, her brain is healing itself.

also, she has had to cut back on her wake up pills (Alertec). they are keeping her up at night.

other changes include vitamins (we are trying) as per Jimmy here at TIMS and we may look at back alignment.

soon we will return to the clinic in Toronto to see if the reflux is gone

[bruce123]

Thanks Doug, that is a great story. It gives me hope.
Having that kind of improvement on a second treatment is not the norm. I am very happy for you both.
Dr. S is definitely the one we would go to if we decide to try again. As my brave wife deteriorates, the reasons for trying again become more and more persuasive.

Thanks again.

Bruce.

[DougL]

Thanks Doug, that is a great story. It gives me hope.

When I first learned of MS and CCSVI, hope was the word.

Having that kind of improvement on a second treatment is not the norm.

I disagree. the doc in Germany did the best he could given his equipment and his knowledge. with all due respect, he was like the stone ages compared to today. when D was tested the second time and still showed major reflux in her right jug, i knew it was time to try again with a newer clinic. again no disrepect to the doc in Germany. even Dr. S said he did a great job the first time. opening up her azygos was a major breakthrough. still hoping she doesn't need a stent to keep things open for good.

the key now is to get D tested again to see if the reflux is gone. she has her good days and bad days so we know we aren't there yet. but the signs gives us hope. many years of MS has taken its toll. she has favoured her right side for years. back is out of alignment, knees are bad, something with her hip. vitamins are bad, body is weak.

the list goes on but i think we have finally tackled the cause of the problem and not just treated the results caused by the problem. as D said "if your toilet is plugged, you don't spend the rest of your life mopping up the water. first you open up the clog and stop the water from spilling out."

As my brave wife deteriorates, the reasons for trying again become more and more persuasive.

has she been tested since her treatment? if she shows any signs of CCSVI then i would consider a second treatment. its a shame that we have to pay but i know a clinic in Toronto that is okay and the cost is $250. Dr S did a more extensive test prior to treatment but the clinic in Toronto did pick up the reflux in D.

there is also the cost of a treatment. the cost of travel (drive if you can to avoid flying after treatment). but we made the trip to Brooklyn a bit of a vacation so all was not too bad.

still we gave Dr S a pretty good down payment on a new car.

i will not make this into a political post but this blank space is where i would say the things i really want to say about my government and my MS society.


...

[bruce123]

has she been tested since her treatment? if she shows any signs of CCSVI then i would consider a second treatment.

She has not been tested because we don't see any value in the travel and expense of getting tested unless we have already decided to do something about the results. If we are not willing to do the procedure again then the results are irrelevant.

This approach is supported by the fact that I am not a strong believer in doppler ultrasound as being a great method of diagnosis. I realise it has value in that it is non-invasive and inexpensive but I don't trust it. This view is based on our experience in Albany.

My wife went for her ultrasound at Dr. Siskin's clinic and the next day she went in for her procedure. We asked the doctor about the results of the ultrasound and she (not Dr. Siskin) said that she had not looked at them. She was going to do the venogram regardless of the ultrasound results. I was happy with this approach since we had travelled a long way for treatment. They ended up opening both of her IJV's.

The next day we went for the follow-up ultrasound and consultation. It turns out that the pre-procedure ultrasound showed only 2 of 5 requirements for a positive CCSVI diagnosis. This means that she wouldn't officially qualify as having CCSVI, and this was with the very experienced ultrasound technicians at the Albany clinic. I figure that if the doctors don't trust the ultrasound then why should I. I was told that they need the pre-procedure ultrasound to use as a comparison for the post procedure one.

I don't want to hijack this thread. This is Magoo's thread and her question is "How at you doing since treatment?". Let's here some more stories.

Bruce.

[jamesoeck]

Boy I have enjoyed reading all of your comments about the different treatments you have all gone through. That just goes to show how different Multiple Sclerosis is in each one of us. Reading some of the comments that come from the caregiver is also great. It takes a tam to deal with MS not only your Doctors but your family also plays a big part on how you react from the treatment you have just gotten. I have never have had any of the treatments mention on this page but I do know what the Multiple Sclerosis person goes through. They have come a long way in research for a treatment for Multiple Sclerosis and I hope and pray that each one of you can get back some of your mobility and strength to enjoy your families. I would like to chat with some of you and share some things of what I have used to battle my MS with out the use of drugs and how I handle depression . So take care and hope that the person that reads this will give a smile to the person that has Multiple Sclerosis.

[Cece]

It turns out that the pre-procedure ultrasound showed only 2 of 5 requirements for a positive CCSVI diagnosis.

Two out of five Zamboni criteria meets the requirement for a CCSVI diagnosis. But Dr. Siskin's group no longer does the preprocedure ultrasound. Not a high enough of agreement between what's seen on ultrasound and what's seen during the procedure.