Kimberly versus MS

Back in Edmonton

2011-05-09T13:52:00.003-06:00

That week went by way too fast! We are back in Edmonton now, and thankfully, we seem to have brought the warm weather with us.

Kimberly and I would like to thank everyone for their warm wishes this week. To this point, we have not seen the dramatic improvements we saw in India last August. However, oddly enough, her vision has improved! She had to make an Optometrist appointment to have her prescription changed. We are still hopeful that we will see other improvements over time. Part of the issue is that many muscles she has not used in months (or years) need to be retrained, even if the nervous impulses to them have improved.

Many people have asked what clinic we had the procedure performed at. This work was done at the Synergy Health Concepts facility in Costa Mesa, California (http://www.synergyhealthconcepts.com/). They are a very professional group. One of their doctors, Dr. Josheph Hewett, was in Edmonton several weeks ago to discuss their services in more detail. You can view that series of videos at http://www.youtube.com/ccsviedmonton.

L.A. Freeways

2011-05-06T22:00:00.001-06:00

People who complain about the Henday or Whitemud traffic have nothing to complain about. We spent about 2 hours on the freeways here today. Miles and miles of concrete, 12 lanes wide, at 65 mph! It amazes me that there are not more accidents.
We spent the better part of the day at Universal Studios. Being a Friday, the place was quiet, and we never really stood in line long. Our favourite was the Simpsons ride. Too funny.
I must say that Kimberly did very well today. Was she weak? Yes, but she walked easily twice as far as Wednesday; and she is still awake now!
Just one more day in Sunny California. I think we will take it easy tomorrow with a little shopping.

Sidetrip to San Diego

2011-05-05T21:29:00.000-06:00

We started the day by heading to the beach! It was much cooler today. It was only 65F (18C) when we got to the water, and there was quite a bit of fog rolling in from the ocean. We visited Crystal Cove State Park. It was once a private cabin community, but was donated to the State in 1979. All the cabins are being restored. After a few hours, the sun finally broke through, and we now see tonight that we managed to get a bit of a sunburn. We even saw some dolphins jumping out of the water! (and hundreds of pelicans).
After a nice picnic on a seaside table, we headed off south. We stopped for a quick snack just south of Carlsbad, and were impressed by the miles of beautiful beaches (and surfers).
We finally made it through San Diego, and turned back north just 10 miles short of the Mexican border.
For Dinner, we stopped in La Jolla and shared a California Pizza Kitchen pizza (yum). Kimberly took a moment to poke the tip of the Mormon church.
Kimberly is doing well, but still finds she tires quickly. At least she is feeling different muscles, and could even feel the sand between her toes. The doctor told us yesterday that her right jugular would like remain mainly obstructed. Can I say she is only in half of her right mind?

Follow up today

2011-05-04T13:55:00.001-06:00

We have our follow up today with Dr. Arata. Kimberly is still a bit tired today. The heat is making us lazy too. It is over 90F here today (32C). I'm not going to complain about that.
No big improvements have been seen yet, but it is still early.
We spent a few hours at Downtown Disney this morning. We even had time to enter the Disney Vaults. We never found any non-remastered copies of Cinderella though. :)

Resting Back at the Hotel

2011-05-03T14:05:00.001-06:00

The procedure has gone well. Dr. Arata(sp?) treated both jugulars and the azygous, in roughly 45 minutes.
We are back in our hotel room now, and she is resting.
Everything appears fine, but she is still too groggy (she says stoned) to comment on any improvements.

Procedure Underway

2011-05-03T09:49:00.001-06:00

I'm sitting in the waiting room, while Kimberly undergoes her procedure. If all goes as planned, she should be in Recovery by 9:30 PST. We should be back at our hotel by Noon. I will report back later with her progress/improvements.
We had a nice birthday dinner last night, at PF Changs, overlooking the ocean.
The picture here is of the surgical section of the medical centre.

Kimberly's Birthday

2011-05-02T17:23:00.000-06:00

We took a VERY quick detour down to Laguna Beach today, while waiting for our doctor to finish with his previous patient.
Everything is a go for tomorrow's procedure. We head in early, at 7:30.
We both think this makes a very fitting birthday gift, even if it is a day late. Time for a good dinner and birthday drink tonight, then in bed early.

Flying to Los Angeles This Morning

2011-05-01T07:56:00.001-06:00

The morning has arrived! We are off to L.A. In an hour. It is supposed to be 29 there today. That will be a nice change from the low temps here in Edmonton. We will have the afternoon to relax (and find our hotel). Tomorrow we check into the clinic to begin the pre-procedure tests.

Leaving for Los Angeles in the Morning

2011-04-30T16:35:00.004-06:00

We leave at 9:00 AM Sunday, May 1, 2011, for Los Angeles. Unfortunately, many of Kimberly's symptoms have returned and we are now seeking a second venous angioplasty treatment. Luckily this time we can travel closer to home (although still not in Canada). I will update over the next few days. The treatment is scheduled for Tuesday.

Back at Home

2010-08-12T21:25:00.005-06:00

We arrived back at home Monday night, at about 9 PM. It took over 30 hours of continuous travel to get back from Delhi! Talk about exhausting.

We were greeted by a small welcoming committee at the arrival gate, when we walked through the doors of the airport terminal. It was nice to see some familiar faces. Thank you Larry, Jim, Sandra, Matt, Katie, and Sarah!

You will all be happy to know that Kimberly continues to improve. There are so many things she can do now, that were very difficult or not possible before the procedure.

Her vision has improved. She reports no "grey fog" in her right eye, and that her contact lenses seem too strong of a prescription.

Her walking is better. Last week she would have required a cane for nearly every outing. It's been sitting at the front door, without use since we came back. She can do the "sobriety test" of heel-toe and not lose her balance.

Her wakefulness has increased. We are still overcoming major jet lag, and the time zone change, but she seems to be less fatigued.

She has sensation in her feet, that she had forgotten about. Her toes can feel other toes, and her toes can feel the floor.

She can drink fluids and not choke halfway through. She never even realized this was a problem before.

I am sure there is more. And, I am sure she will notice more over the coming days and months.

It seems fitting that she was interviewed today by our local TV station, regarding the "super bug" story that is circulating in the media. She was the lead story!

http://www.globaltvedmonton.com/video/index.html?releasePID=_1T4Kq23OU6yrJE_yEXaNDM7fT_jnGyo

Return Trip to Canada

2010-08-08T20:43:00.001-06:00

Just touched down in Bangkok for about 45 minutes to drop off and pick up passengers. Thailand looks beautiful from the air. I would like to come back for a visit some day.

Farewell India

2010-08-08T08:06:00.004-06:00

The time has come for us to leave India. It has been a wild ride. I will certainly not forget our week in this countrty. I am also missing the comforts of home.

Friends have sent us some media articles about how Alberta Health Services is completely dismissing this procedure as unproven and even dangerous. It's dissapointing to read this from our government. I have seen first hand how both Kimberly and Vickie have improved this week. These are not huge changes to the non-MS sufferer, but are huge to them. Did I mention that Kimberly walked the entire grounds of the Taj Mahal without using her cane? I have to believe that they will continue to improve over time.

Perhaps the medical community in Alberta should have a dialog with the medical community here in India. Unfortunately, I think that the ego of many physicians back at home is preventing them from even looking into the research. The media and the government need to get their facts straight. These caring physicians certainly do not strike me as "scam artists". In fact, I was impressed with our doctor's healthy dose of skepticism about the very procedure he was performing.

Thanks to everyone who followed our adventure this week, and all the wonderful comments. I will maybe make a post or two on the way back home. See you back in Edmonton.

I am including a picture from our breakfast this morning at our new found friend's home. Thank you Uttam and Santosh for your incredible hospitality, and engaging conversation.

Last Day Breakfast

2010-08-07T19:28:00.002-06:00

It's going to be a very long day today! We are up at the crack of dawn again today, and we are all exhausted. We are attending breakfast at a friend's house with whom we have recently become acquainted.
Our flight does not leave until well after midnight tonight (3:30 am, in fact). And then, the long journey back to Canada. This time, we touch down in Bangkok, Hong Kong, and finally Vancouver. The very last leg of the trip gets us into Edmonton at about 7 or 7:30 tonight MST.
We have to find some time to sleep today. I don't think we can handle 18 hours of waking today, plus another 25 in the air!
Kimberly and Vickie are both doing very well (even though tired). Kimberly walked then entire grounds of the Taj Mahal yesterday without assistance of any kind! Vickie was able to climb the 22 steps to the tomb and back down.
I will post again when I have more time, and when I am hopefully more rested.

Taj Mahal Field Trip

2010-08-07T11:29:00.004-06:00

I am very tired as I write this. It has been a very long day. We left our hotel at 6 am this morning, traveled to Agra, and returned at 9 pm this evening. I cannot even begin to describe the things we saw today. The drive there and back was certainly an adventure (if not a little dangerous), and the Taj Mahal was like a postcard come to life. I should have some more time tomorrow to post a longer summary of today.

Off to Agra!

2010-08-06T18:33:00.002-06:00

Heading to the Taj Mahal today. I will update tonight with all the photos, etc. Wooo Hoo!

Dinner at the Galaxy Hotel

2010-08-06T09:34:00.003-06:00

We are having the best Indian food I have ever had. It is a nonstop sampling of many regions of the country.
The icing on the cake is a local band doing covers of Glenn Campbell, ABBA, and John Denver; without knowing all the english words, or playing a single instrument.

Checking Out!

2010-08-06T03:21:00.001-06:00

See you later Medanta - Medicity! We are cleared to leave. Everything checks out medically! Thank you doctors!

Making Indian Friends

2010-08-05T05:40:00.002-06:00

Our time is nearly up at this hospital. I will be happy to be finished with the hospital food, but sad to be parting with all the wonderful doctors, specialists, and staff that made our stay very comfortable. It still astounds me how many people attend to our every need. It can get a little annoying, as every 10 minutes, there is a knock on the door, announcing a different staff member with something to offer. That certainly beat the opposite situation though. I can easily point to our horrid experience at the Grey Nuns hospital back in Edmonton, where Kimberly spent 24 hours in a lounge chair, and was never fed a single meal; only to leave with a prescription for Advil.

We had a interview scheduled with Jas Johal from Global TV, who is stationed here in Delhi. As it turns out, he was called away to Afghanistan at the last moment for a bigger story (I can live with that).

However, we did have a surprise visitor from someone else who lives here. Dr. Singh suggested that this young woman come talk to Kimberly about the procedure and its outcomes. It was moving to see the hope in her eyes as Kimberly described the new found life she has found. Bani, we hope your improvements are at least as great as Kimberly's. I am sure you will running again!

Tomorrow, we are discharged. We will be staying at a very posh hotel just a few kilometres away from the hospital, named the Galaxy Hotel. We plan to kick back a little on Friday and enjoy all the amenities the hotel has to offer. Saturday (early) we head to Agra to see the Taj Mahal, and then travel back the same day for our last night in Delhi, back at the hotel. Sunday will be a shopping day at either Dilli Hut, or the hotel's shopping complex. I hope our suitcases have enough room for all our souvenirs.

Delhi Street Scenes

2010-08-04T20:18:00.005-06:00

It's Thursday morning here. Both Kimberly and Vickie are progressing nicely. Kimberly stood on one foot for about a minute this morning. They both have Ultrasounds scheduled for some time today -- to compare before to after.
A lady from Montreal had the procedure done last night. The two men from B.C. will be done today. There are about another 4 people arriving in the next day or two. This must be embarrassing for the Canadian government.
I copied some video files from my camcorder to my "HP Mini" this morning, for safer keeping. Here is a typical street scene from Old Delhi. This was captured during our rickshaw ride. Our poor driver, Allum, was about 130 lbs and dressed in a full shirt and long pants.

p.s. We did make it across the street. The video is too long to show it all.

Another Crazy Day in Delhi

2010-08-04T08:06:00.007-06:00

Ok. Apparently Indian people do eat much later than we do. It's 7:30, and still no dinner. I missed lunch too, because I did not have the patience to wait past 1:30. grumble, grumble...

Anyway, Kimberly continues to improve. By any other measure, it seems like small improvements, but to us they are giant steps. I am watching her balance on one foot right now. Big deal you say? That was a major feat before the procedure. In fact, she was able to not just balance, but hop and land on one foot, without assistance. She was able to correct her stance without losing balance and falling over.

Drs. Singh and Gupta just came to visit and check her progress. They are both impressed with her condition. She may even end up being a 'poster child' for this procedure, at this hospital. They have asked if she and Vicke would mind being video taped, regarding their improvements. They said that they have been very good about conveying their improvements in very objective, scientific terms; as opposed to simply saying "I feel better".

Myself, I was able to sneak away for a few hours to the local mall, with my new found Canadian friends Nancy, Dennis, and Lee. Amongst all the tarps, tents, and poverty, this masssive shopping complex exists. It puts West Edmonton Mall to shame. Every entrance held a security check point and armed guards (double barrel shot guns). All the major brands are present: Adidas, Rolex, BMW, Marks and Spencer, etc. We actually avoided most of that and chose instead to head for the "Big Bazaar". It was sort of hidden on a sub level beside the parkade. We dubbed it the Indian Walmart. I went on a spending spree, and dropped nearly 4000 Rupees. That's about $80, by the way: shirts for 2 dollars, spices for 3 dollars, a watch for 17 dollars; and so on.

I am really starting to get used to this place. I am starting to see some 'method' behind the madness. Our time is quickly running out here. We are being told that they expect to discharge us on Friday of this week. We are still hoping to get down to Agra on Saturday and see the Taj Mahal. We will see.

Skipping Lessons

2010-08-03T21:38:00.004-06:00

For anyone wondering if this procedure works, all you have to do is look at these pictures.

From Kimberly

2010-08-03T18:59:00.001-06:00

Wow! I will make a list of the improvements as so far there have been many! These may seem like small things, but when they are gone and you get them back, I repeat Wow!Did you know that I can feel my toes touching each other and my feet are ticklish? I can see out of both eyes, and could pass a sobrity test sober now, many of you will know what I mean.Did u know that tile floor is cool and smooth on the bottem of your feet? The dr even watched me as I discovered things and commented it was like magic to me. I feel like a kid discovering things I never knew I lost. I repeat wow! This is no placebo, it is a miracle.

Sensory Overload

2010-08-03T09:27:00.003-06:00

While Kimberly stayed in the hospital today to recuperate, I joined up with some other Canada patients and toured Old Delhi.

Wow, what an experience! I am still trying to sort out the day in my head. The crush of people, the chaos, the infrastructure. I saw everything from naked children begging, to people dressed in Armani in their BMW SUVs. It was like nothing I have ever experienced before.

Kimberly continues to improve. She says she can feel the floor with her feet, and she can do the 'sobriety test' with much less wobble. They are still keeping an eye on the considerable bruising that has occured around the injection site.

Feeling Rested

2010-08-02T20:36:00.002-06:00

Despite being awoken multiple times throughout the evening, I think she looks pretty rested.

Venography Photos

2010-08-02T20:25:00.004-06:00

Here are some pics of the Venography that was done during the procedure yesterday. You can clearly see the balloon being inflated in some frames.

You can also see how the blood flow has dramatically improved, as the procedure progresses (top to bottom, left to right).

Her Hands are Warm!

2010-08-02T11:24:00.003-06:00

The procedure took a little over three hours. They struggled with a blockage in the upper right Jugular that would not fully open. The left side opened nicely, and the lower right side was also opened with little trouble. The Ayzgos showed no signs of stenosis.
They want to let things be at this point, and see if the upper right Jugular improves a little on its own.
She had always had back pain for years, and that is what bothered her most. She has been asked to remain still for several hours after the procedure to prevent the injections in her groin from bleeding. They even called Dr. Gupta in from home to verify everything was ok, as there was a little swelling. Everything is good.
The big change is her warmth. Her hands have never felt so warm, and her feet are slightly warmer. She is even complaining about being too hot! I had to turn up the air conditioner in the room.
We are cautiously optimistic, and will see what tomorrow brings. Right now, she needs rest.

The Procedure Has Begun

2010-08-02T04:11:00.000-06:00

After a bit of confusion regarding whether I was permitted to come with her to the operating room, I was eventually let in to speak to her and her vascular surgeon, Dr. Gupta. (http://liberation-therapy.blogspot.com/p/our-medical-team.html). I really respected his candor about the procedure, its risks, and its potential benefits. I especially liked his comment about why the medical community at large is so hesitant about this theory. "They have a blind spot".

Now, all I can do is wait in my room for the procedure to be complete; which could take several hours.

Waiting for the Procedure

2010-08-02T01:43:00.000-06:00

As it turns out, I am not allowed to be with her, in the room while the procedure is being done. We are supposed to be provided with CD's, etc of the procedure, afterwards.

We had an interesting conversation with the anesthesiologist. He asked us, "is this procedure being done in Canada?" He was surprised to learn we were not doing it. So are we!

There are about 3 other Canadians on this floor. We are going to swap stories during our days here.

Procedure being done this afternoon!

2010-08-02T00:16:00.000-06:00

Now that all the tests are done, she is scheduled for the Venoplasty (Liberation) procedure this afternoon. She is excited and nervous.

I am hoping I can go with her into the room where it is performed.

Internet Access - Yay!

2010-08-01T23:07:00.000-06:00

Stopped by International Patient Services a few minutes ago, and they lent me an aircard so I can access the internet from my laptop.

Kimberly came back into the room about two minutes after I did. Both of her MRI and Ultrasound are done now. Both went as well as could be expected, with these sorts of things. The Doppler technician indicated that he noticed 'reflux' in the right jugular. This confirms what we saw in the MRI from back in April.

Here a few pictures from outside our room at the hospital. What a different world from where we come from in Edmonton!

Day 2 in India

2010-08-01T20:40:00.001-06:00

Kimberly is getting her MRI this morning while I eat breakfast.

I cannot get over the amount of staff here. It must be a 5:1 ratio to patients.

I will go visit International Patient Services after eating and settle our account, and hopefully get wireless access.

Tomorrow will be a busy day

2010-08-01T05:26:00.001-06:00

ECG, blood work, and chest x-rays were done today.

We spoke to the head of the MS treatment program this afternoon. He has scheduled an MRI, and a comprehensive Doppler ultrasound (which includes an intercranial scan - not done elsewhere) for tomorrow morning. There may even be time to perform the venoplasty procedure tomorrow too.

I also learned that I can borrow one of the hospital's wireless cards. With any luck, I will be posting photos soon.

Day of Rest

2010-07-31T20:27:00.001-06:00

Kimberly is sleeping as I type this.

One of the doctors has walked in. He says that the MRI and ultrasound will be performed today. They don't waste time here.

What a different landscape here. It made me chuckle to see two cows walking down the middle of the street in front of the hospital.

I am having difficulty getting an internet connection here. So, I may have to use my phone for all updates; and unfortunately that means no pictures - since every photo costs 25 bucks to upload. I will take plenty of pics, to post later.

Just Landed in Delhi

2010-07-31T14:19:00.001-06:00

It is 1:45 in the morning here. We are all tired, but excited to finally be here.

Now to find our driver!

Hong Kong Airport

2010-07-31T07:15:00.000-06:00

The three of us are sitting here, waiting for our last flight of the journey. We have to wait another hour and a half to board the flight to Delhi.

We all slept terribly on the last 11 hour flight. Cathay Pacific offers excellent service though.

Already Tired

2010-07-30T17:11:00.001-06:00

And, we are only waiting for our first flight to take off. We need to be liberated!

Taking the double decker!

2010-07-30T16:25:00.000-06:00

Waiting for our flight to Hong Kong

2010-07-30T16:20:00.000-06:00

About to leave Canada, on our first leg of the journey. I still cannot believe we are going to India.

Leaving Edmonton

2010-07-30T11:11:00.000-06:00

Today We Fly Out

2010-07-30T07:42:00.000-06:00

Today is the day we go! A long day of travel ahead of us...

Magnetic Resonance Venography (MRV) Scan

2010-07-29T19:14:00.000-06:00

We are not radiologists by any stretch, but looking at this picture, it seems clear that blood flow on the right side of the head is much less than on the left.

This image was taken during our trip the False Creek Medical Clinic, in Vancouver, in April of 2010.

It will be interesting to compare this image to the ones taken before, and after, the procedure in India.

Kimberly on GlobalTV

2010-07-26T12:11:00.000-06:00

http://www.youtube.com/watch?v=HIyqrIhhGG0

What is "Liberation"?

2010-07-26T10:02:00.000-06:00

Liberation is the name given to the process of opening narrowed veins in the neck of patients with a condition which has been called CCSVI. It is thought that these narrowed veins reduce the blood flow from the brain. The theory is that due to the reduced calibre of the veins, blood (and the iron of which hemoglobin is composed of) stays in the brain longer than non-CCSVI patients. The result is that this iron gets deposited in the brain, where the immune system treats it as an invader. When the immune system attacks the iron, it therefore also attacks the neurons in the brain itself.

Once the veins have been opened, the blood drains normally, and the associated iron is also flushed away. There have been anecdotal reports of patients having symptoms stop, or even reverse.

The procedure is very controversial, and there are no long term studies as to its extended effects. Several studies are underway to verify the theory, but they are in their early stages.

The North American and European medical communities are treating the theory with a healthy dose of skepticism. The only options for treatment are currently only available in three countries: Poland, India, and Bulgaria.

A very good overview of this theory and procedure can be found on the CTV news website:
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_QandA_091121/20091121?hub=Health

Preflight Check

2010-07-25T10:38:00.000-06:00

We had Avery take some video of Kimberly walking and doing some balance exercises last night. We will compare these to the post procedure performance next week. As you can see, she is somewhat off balance when she walks.

T Minus 6 Days Until India

2010-07-24T12:10:00.001-06:00

So, we just booked our flights yesterday to Delhi. We fly out Friday, July 30. The liberation procedure is booked for August 2nd.

More updates to come. We will posting our progress throughout the trip.