Results of my Doppler Ultrasound - May 2nd, 2010

I know I haven't posted in a while, but there was not much to report.  I'm still waiting for this blood clot to dissolve so I can get off this Coumadin.  I went for another doppler ultrasound in Barrie yesterday and was told that there is much better flow but the clot has not totally disolved.  I'm to stay on Coumadin and see them in another four months.  I continue to have someone come to the house and take blood, once a week to keep my levels in the right range.

In the meantime I'm going to try to get a doppler done in Cornwall so I don't have to go back to Barrie.  One  thing that is good about going to Barrie is that I get to visit my sister and her husband.  We have such a good time when we go there.  We have made some new friends and they treat us very well and make us the best meals. 

Last week I started back on Prozac cause I felt like crying all the time.  I had a knot in my throat for the stupidest things ie sad articles and movies, struggling to make my bed etc.  The doctor had taken me off when I started the Coumadin and I really did not think I needed it anymore.  Well, I guessed wrong as I'm feeling much better emotionally!

My energy seems to be up and down, so I'm not sure if it's the effects of the Coumadin.  I've been reading a lot about CCSVI and there is still a lot of mixed reviews as some do really well while others do not.  Is it placebo, who knows!

In the meantime, I walk around the house using my walker and try to keep positive!

Results of my Doppler Ultrasound - February 26th

On Tuesday, February 22nd, the day of my 20th wedding anniversary, I received some good news.  I went to the Imaging Clinic in Barrie to have my 3-week follow-up doppler ultrasound.  The technician told me that the blood clot in my left jugular is starting to dissolve and there is now some blood flow getting through.  The Coumadin is working.  I went for blood work on Tuesday and my levels were 2.7.  On Friday, I called the doctor to get Thursday's results and it had increased slightly to 2.9.  He told me to continue on the 2 pills a day (10 mg). 

I updated my doctor in Brooklyn and he mentioned that this was great news. He said he doesn't know what happened as he had a group of patients with clotting, the likes of which he has never seen before and has backed off a bit in the over dilation. 

I have lost my balance and have fallen three times in the last week so I'm now using my walker before I really hurt myself.  I can still feel the bruise on my head from the fall I took last week at my sister's place.

Despite not having any improvements from my last procedure, I am very optimistic that the increased blood flow will change things.  I go back to Barrie in 2 months time and hopefully the blood clot will be completely gone by then.

More Blood Work - February 15

Today I got the doppler ultrasound results from my appointment on Feb. 2.  It shows that my right internal jugular vein to be normal flow.  But on the left side it says that the internal jugular vein does not appear patent with trombus imaged.  No flow was obtained by pulsed doppler suggestive of venous trombosis.

I started to take coumadin (an anticoagulant drug) that day and have since been having blood work done twice a week.  This test is called the PT/INR and it used to monitor the effects of blood thinning drugs.  The normal ratio is 1 and my results were 1 the first week and then 1.1 last Friday.  My doctor has increased my coumadin amounts twice so that I am up to 2 pills or 10 mg a day.  I guess the best ratio for anyone with a blood clot is to get it betwen 2 and 3.  I had a blood test today and will be having another one on Thursday so I'm anxious to see if the extra coumadin gets the level up! 

I go for another doppler ultrasound in Barrie next Tuesday, Feb. 22nd which is also the day of our 20th wedding anniversary so getting good results would be a nice gift! 

I had a good friend and his wife over this weekend.  This friend has had MS for about 25 years and at one time spent about 8 years in a wheelchair.  It's so nice to see him walking around without any aids.  When I asked him what his secret is, well he says he doesn't have one.  He never had the CCSVI procedure and it's a total mystery why his MRI shows remyelination.  He is on his threadmill everyday and his laugh and good humour is infectious.  He is my inspiration!

Most days I walk around the house with my walker now since I still have a lot of back pain.  Although my energy is still very good, my body is not very cooperative and I still drag both feet a lot, more so with the left leg.  I know I should be exercising but lack the motivation. 

I will post again once I get back from Barrie next week.  The good thing about this trip is seeing my sister and brother-in-law more often as they live in Orangeville.  I wish they lived closer as I love spending time with them

February 1, 2011 - Blood Clot

I know I haven't written in a while but it's because I was waiting to go for my doppler ultrasound in Barrie, Ontario yesterday.  The technician did not have good news for me as I was told I have a blood clot in my left internal jugular vein.  This is the vein that Dr. Sclafani had some difficulty with.  In his report, he mentions that it was quite difficult to get into the left internal jugular vein. There were multiple areas of abnormal valves and hyperplastic areas. I finally had two areas on that side ballooned and after the procedure that side was very painful and I was told to take Tylenol. 

I was really surprised that I had a blood clot since I don't have a stent and I was on an anticoagulant for 21 days after the procedure and then I continued on baby aspirin every day.  I'm a bit worried about this blood clot especially after seeing the urgency at the clinic in getting in touch with my doctor and still having some discomfort in my neck since my procedure depending on how I turn my head. Also, for the past few weeks I wake up feeling like I have a headache starting or more like some slight head pressure but it eventually clears up somewhat.  I also wonder if this is why I have not had any major improvements. I don't know much about this and whether blood thinners alone can disolve the blood clot but at least it's been discovered and I have proper followup.  I also informed Dr. Sclafani, the doctor in Brooklyn, and he was sorry that this happened.  He wants me to keep him informed so that we can look at what we need to do after the anticoagulation is completed.

A Video of My Brooklyn Procedure - January 13, 2011

Last week I received the CD of my procedure from Brooklyn. I was disappointed that this was strictly images and not like the one I got from Poland which was video where you can actually see your heart beating! However I combined all the images into a show and uploaded it to YouTube. Here is the link:

http://www.youtube.com/watch?v=kbCC6iBSzf8

You can clearly see where the blockages were as the inserted balloons show the area of constriction.  If you want to compare it with the written report, it is included in a tab above.

This past weekend I spent it in Kingston since my daughter was in a hockey tournament.  I went to the arenas for 3 our of the 4 games she played.  There is no way in the winter I could walk alone with just my cane as hitting water could send me for a tumble.  Thank god my husband does not mind (well he says he doesn't) walk slowly with me hanging off of him!

My lower back is still very sore but I actually spent time yesterday and today doing stretches and getting on my recumbent bicycle.  My left leg is not very cooperative and I sometimes have to use my arm to make it turn.  Since I just started using the bicyble, I am hoping that every day gets easier.  I will keep you updated on my progress.

Happy New Year

I am convinced that this year will prove that venous obstruction is in some way related to the symptoms and deterioration of multiple sclerosis.  CCSVI will continue to be a big part of the news in 2011.

Yesterday was 4 weeks since my procedure in Brooklyn, NY and although I don't have any major improvements in my walking ability, my energy level has greatly improved.  My balance is also much better.  I noticed this when I'm in the shower or when I pull a sweater over my head and don't have to hold on.  One thing that is really bothering me is a very sore lower back.  This is something that I have struggled with for quite some time and it sort of comes and goes but it has been pretty constant the last 2-3 weeks. 

I will continue to keep you updated!

The Report of My Procedure

I have attached the report of my CCSVI Procedure if anyone is interested in reading it.  It is included in the tab above.

One Week Post Procedure - December 10

Well, it's been one week today since I was treated in Brooklyn, NY.  I received today the report of my procedure.  It was interesting to read as this was all discussed to me during the course of the procedure and again at the end while I was still on the table but still in a state of  &#?*#!

I'm feeling better and stronger every day but my neck area on the left side is still very sore.  I suspect this area is taking longer to recover as the left side demonstrated multiple areas of abnormal valves and hyperplastic areas of these veins.  According to the report it required multiple dilations at up to 20 atmospheres of the 18-mm angioplasty balloon before the stenosis was ultimately overcome.  I also had narrowing higher up where a 14-mm balloon was placed in that region and inflated to 20 atmospheres.  While doing the left side there was a loud pop at some point that could be heard by both doctors.  While I was worried, the doctors seemed pleased upon hearing this loud sound, go figure!

While doing the azygous area, the doctor had me lift both my arms over my head during this procedure. This was something new that was not performed in Poland.

I will be attaching my full report if anyone is interested in reading it.  It is 4 pages compared to the 10 lines on my Poland report which I could not understand anyways, hi hi.

Second Liberation Procedure - December 3rd, 2010

It's Saturday morning and I'm sitting in my hotel room at Hotel Le Blue in Brooklyn, NY, the day after my liberation procedure by Dr. Sclafani and another doctor who he was training to do the CCSVI procedure.

I have not written in my blog since October because I no longer had any improvements.  I put my procedure on YouTube and sent the link to Dr. Sclafani and this is what he had to say about it: 
dear Sue
i reviewed your youtube video. You have a very pronounced stenosis of the valves of the azygos vein that needs angioplasty. the valves are not opening properly. it is very well seen on the video.
Also the right jugular angioplasty seems undersized. Would like a second look at the left jugular too

WELL that is how I ended up here getting a second procedure.

On Thursday, I had an doppler ultrasound at King's County Hospital where the technologist saw abnormalities, reflux and valve prolems with my left and right jugulars.  I also met two people who were scheduled for the procedure on Saturday.  There was a lady from Toronto and a man from Long Island, NY.

On Friday, I had my procedure at the American Access Care in Brooklyn.  I was in the procedure room for close to 3 hours where I had the following done: The wire and catheter was inserted in my left groan area. The first thing he checked for was May-Thurner Syndrome and he confirmed that I did NOT have May-Thurners. Then he checked my right jugular which had restenosed (blocked back up) and they angioplastied it using a much bigger balloon than the one in Poland which was only a 10mm.  I think it was an 18mm but I have to wait for the report to confirm this.  He then proceeded to the left side where I had two places angioplastied.  One in the area of the collar bone and the other way up by the ear.  In Poland they had told me that the flow was a bit reduced but it was not worth the risk to angioplasty. Dr. Sclafani did mention that my vein on this side was much more narrower than the right side.  They then proceeded to my azygos where he proceeded to do an angioplasty there. Here Poland saw no problem with this area!

I was in excellent hands yesterday.  The staff and the care I received was top-notch.  I should mention that I got sick after the procedure, which they suspect was a result of the medication I received during the procedure.  I also have a history of not tolerating pain medication very well, so I could not enjoy the wonderful sandwich they had prepared for me.  A nurse is on call 24-hours and the doctor is available at any time.  I actually spoke with him this morning to report nausea and weakness from not being able to eat and drink.  But I'm happy to report that this has since past and I feeling much better.

I will keep you updated as to my progress!

ALMOST 17 WEEKS (4 MONTHS) POST PROCEDURE

Well you know how I said earlier that I should not get discouraged because they said it could just take time for my body to heal or just get used to this new blood flow..... well I am DISCOURAGED!  This week has not been a good week.  My foot is still very sore even though I have been wearing my new orthotics and my back and neck are killing me.  I have been fighting a cold for the last few weeks but this week my cold is gone and I am still feeling crappy.

My mobility is getting worse all the time. I still have not used my walker but my balance is definitely getting worse.  I took a tumble last week but it was first thing in the morning and I was still have asleep. 

Having put my procedure on youtube, I decided to send the link to a few doctors in the states who perform this treatment  to get some feedback.  Two doctors replied.  One said that it sounds like restenosis and I would probably benefit from a repeat procedure. The other said that he only watched first few seconds. He said:  Your azygous is clearly abnormal. Did you notice how the contrast in the lower part just sat there? I will look at rest later but thought you should know that azygous is abnormal.

I find it hard to believe that I would have blocked back up since my doppler in Barrie, Ont. showed everything as normal.  Did Poland miss my azygos area?  I heard that clearing up blockages in the azy area helps with mobility.  Do I need a second procedure?

My Procedure Video is on YouTube - Oct. 12, 2010

I managed to put my procedure video on YouTube so you can see the video instead of pictures like I had posted earlier.  Here is the link for that:  http://www.youtube.com/watch?v=ODdfR3G4Mf8
The first part of the procedure is with my Azygos area where I suspect there might be a constriction.  This is something that does not show up in a doppler ultrasound like I had in Barrie, Ontario, a few weeks ago.  The lady mentioned above had blockages there when she went for a second procedure.

I was also interviewed for the the Local Newspaper again and this time they have included a picture of me.  Here is the link for that:  http://www.standard-freeholder.com/ArticleDisplay.aspx?e=2777260

My Follow-up Doppler Ultrasound - Tuesday, Sept.28

Well on Friday, I went for a 3-month follow-up doppler ultrasound in Barrie, Ontario.  The technician there said she was trained in Italy by Dr. Zamboni.

I have had 3 of those scans so far and she is the first to scan so far up behind the ears, but she only did this on one side?? She scanned both laying down and sitting up. She mentioned that everything was normal.

I told her that I think that I blocked back up. She said that it just takes time and be patient. She used the analogy that it is like someone with strep throat. If someone goes and gets antibiotics as soon as symptoms appear, it will heal a lot faster. If someone waits to long then the healing process will take a lot longer. She said that it even took Dr. Zamboni's wife many, many months to start feeling all the benefits.

When I asked her why I got so many benefits the first five weeks and lost some of them, I think she said that having the angioplasty was a shock to the system. Not sure but the body is like on a high from the new increased flow. I asked her if she thought that finishing the drug Plavix had anything to do with it since I was on that for 5 weeks, she said no. It was probably just coincidence but I should continue taking baby aspirin! She said it was important to keep moving!
 
While I was in the waiting room I met a lady who had the liberation procedure done by the same doctors in Poland that I had.  She was from Newfoundland and was in Barrie for her 1-month follow-up.  She met the two couples that went there from my home town.  Talk about a small world!!!

One of these couples was in the Cornwall Newspaper last week and I was also mentioned as the first person with MS going to Poland from Cornwall.  In the article they mention that I can now walk with just my cane which is true for walking around inside the house, but I still don't feel very confident yet walking outdoors.  I still prefer walking holding on to someone's arm or using my scooter or walker.  Here is a link to the article  http://www.standard-freeholder.com/ArticleDisplay.aspx?e=2765581

Sept. 16 - 11 weeks post procedure

I have not updated my blog for 3 weeks now as I don't have any changes to report.  Last week I was having a lot of back pain but this week it is much better. Next Friday I have a follow-up appointment for a doppler ultrasound here in Canada at Barrie Vascular Imaging in Barrie, Ontario.  The couple I went to Poland with had their appointment last week and they found that both his jugulars were still flowing perfectly.  He also has seen marked improvement since his return from Poland were he had both jugulars ballooned.

Something interesting is that one of the ladies that I went to Poland with, had a second procedure done in California last week.  Since she had not felt any improvements from her trip to Poland, she sent her scans to a radiologist in her home state of California who is now treating CCSVI.  Here is a brief summary of her 2nd procedure 

"So my wife had her 2nd round yesterday, with Dr Arata.  RIJV 80% blocked, ballooned to 16mm (low pressure). LIJV stent seems to have migrated a tad in its first week, still stenosed rather badly, some 12mm high-pressure ballooning seemed to help there, but the flow was still slow. He checked her left sinusoid vein, nothing to fix. AZY had a pretty bad stenosis that he ballooned with 8mm and 10mm.  Heading to Hubbard for a follow-up scan at noon."

Waiting to hear how she is doing!

If anyone is interested and since there might not be such a long waiting list as Dr. Siskin in Albany NY, here is the information for Dr. Arata in California.  Michael Arata, Pacific Interventionalists (Newport Beach in Southern California). He's been doing veins for 20 years and May-Thurner for 10.  http://www.pacificinterventional.com/ (949) 221-0128 and 221-0129

August 27th – 8 weeks Post Procedure

Wow, I can’t believe it has been 8 weeks since I was in Poland getting angioplasty in my blocked jugular veins. I am so fortunate and grateful that I was able to get this procedure. Although I felt that I had a setback a few weeks ago, I am now feeling energetic and good again. My balance, energy and endurance is noticeably better and I do not experience the total feeling of exhaustion when performing tasks that I used to feel prior to going to Poland.

Being diagnosed secondary progressive left me with nothing to look forward, as there is no treatment for this stage of the disease. I now feel like my body is in a healing mode and that the blood in my brain is now flowing properly and with time will dispose of the excess iron buildup

Since coming back from Poland I have really tried to stick with a heart healthy diet, low in saturated fat, processed food and eating more fruits and vegetables as this is so important in keeping the blood flowing. Exercise is another thing that is good for my circulatory system and I have slowly started incorporating easy exercises and stretching in my daily routine.

I strongly believe that I will continue to improve and look forward to more positive posts in the weeks ahead.

Why I believe in MS and the Vascular Theory?

I was asked this question today and decided I would answer it in my blog.

I guess I’m just tired of the autoimmune theory that for some unknown reason, our system goes haywire and starts attacking our own cells. It was such good news to hear that a vascular surgeon (Dr. Zamboni) doing research, as his wife has MS, found vascular abnormalities in almost 100% of MS patients he studied. I know that his theories have to be proven and that studies have to be done before CCSVI can be accepted as scientific fact but there is a lot of documentation dating as far back as pre-1990 talking about iron deposition and vascular damage in people with MS. When I was in Poland, the 23 MS people who were there, all had blockages and there are now thousands of people getting the procedure with the same results. Many people have reported significant improvement of their MS-related symptoms following venous angioplasty even those who were progressive got some type of benefit.  Here in Canada, Dr Sandy Macdonald found that 90% of the almost 300 MS patients he has tested in Barrie Ontario had CCSVI.

Another important aspect is that it has always been a problem to explain why the autoimmune cells were able to cross the BBB so easily in the MS disease process. I read that the biological mechanisms associated with CCSVI degrade the integrity of the BBB and allow the autoaggressive immune cells to cross the BBB much more easily.

Researchers at Georgetown University have concluded and published comprehensive scientific papers that show that the venous malformations that drive CCSVI are almost exclusively congenital, that is, they were there at birth. This is critical because it shows that CCSVI precedes the MS disease process and is not an effect of it.

Finally I found a link between CCSVI and alternative treatments and supplements and why some MS patients found symptom relief:

Prokarin - combines histamine and caffeine. Both are known vasodilators (open the blood vessels).
LDN - low dose naltrexone. One of the effects of LDN is angiognesis, the creation of new blood vessels.
BEE STINGS - increases histamine in the system, which creates vasodilation (opening of blood vessels).
EGCG - green tea extract- chelates iron from brain tissue and is an anti-oxidant.
HBO - hyperbaric oxygen treatments- increases oxygen delivery to the brain.

Getting the Procedure Done in Albany, New York

A few people have asked me if I saw the lady called Maria who was on CTV News last week. Here is the link to the story - (http://www.youtube.com/watch?v=s_jydBqNh7Y).  She mentions that she got the liberation treatment in the US for $5,000.  I had already made my plans for Poland when I found out about Dr. Siskin in Albany, New York back in May but I would definitely go there this time around if I find out my vein has blocked back up (restenosed) which happened according to Dr. Zamboni in approx. 50% of the people he did the procedure on. 

I believe that the lady on CTV might have gotten the procedure done by Dr. Siskin in Albany, New York.  From forums that I have read, many Canadians are going to Albany, New York. Don't quote me on this but I read somewhere that they perform the procedure for $3,000 plus $2,000 per stent if done at the clinic and prices are more if done at the hospital. There is a waiting list of 3-4 months. If you want more information here is the link to this clinic -
http://www.communitycare.com/Practices/Interventional_Radiology/CCSVI.asp

There was a CCSVI Symposium a few weeks ago in New York where the doctors performing the procedure spoke.  Dr. Siskin was there and if you want to hear him talk about his procedures that he has performed, here are the links: 
Part 1
http://www.youtube.com/watch?v=ZL5DmnXw9BQ&feature=PlayList&p=F8484225816B8685&index=7
Part 2
http://www.youtube.com/watch?v=riX3g8CN2Gs&feature=PlayList&p=F8484225816B8685&index=3

If you feel like doing some reading, there is also a link on the internet called This is MS where people talk about their experience of getting the procedure done in Albany, NY:  http://www.thisisms.com/ftopic-11660-days0-orderasc-0.html

There is another doctor that does the procedure in Albany NY and his name is Dr. Mehta. I read that he only does unilateral venoplasty -- he only does one jugular at a time for safety reasons but he will two in the same week.   Dr. Manish Mehta's phone number: 518-262-5640 and his website is: http://www.albanyvascular.com/index.htm  To read what other people have said about him, go to this link - - http://www.thisisms.com/ftopic-9998-days0-orderasc-0.html

Friday, August 20th - 7 weeks post-procedure

Yesterday, I went to pick up my orthotics and hope this helps my arch that completely collapses and turns in when I walk.  As for the arthritis and swelling in this foot, it was suggested that I massage it with Arnica cream 3-4 times a day.  I now have to slowly get use to my new orthotics by wearing them every day but to start slowly and increase the time in them every day.

I can still walk in the house with just my cane but I don't feel as sturdy as I did from two weeks ago.  Although I walked up the stairs from the basement last night, it was a lot more strenuous than a few weeks ago. 

I sent in my procedure CD to Dr. Sandy McDonald  who I will be seeing for a follow-up doppler ultrasound in Barrie, Ontario on Sept. 24th.  I worry about re-stenosis! 

Someone on the MS forum mentioned the following analogy which makes a lot of sense to me in regards to our collapsed veins and one of the Doctors who does the procedure calls this "elastic recoil":

Imagine a garden hose that has been lying in the sun with a huge, heavy rock on it - say from 30-60 years. Suddenly someone notices and removes the rock. Where the rock was the hose is squished flat & no water gets through. Now you can manipulate this hose, run a stick thru it, etc. and get it to re-inflate to it's normal size. But because the structure of the hose had become so accustomed to being flattened where the rock was, gradually it may recollapse. Maybe it will, maybe it won't. If it does, you have to decide is the hose strong enough to endure another manipulation?


I follow the people who were with me in Poland and her are some of the comments that they have mentioned:

- Some small positive effects to symptoms but the main gait/spasticity/drop foot hasn't seen much improvement. Varies all the time which I've become accustomed to over the years so definitely not worse.

- I'm not doing well either. I have alot of fluctuations of symptoms and very low energy, still fatigued. My neuralgia seems worse and other symptoms the same.

- My wife has also had a few worse days. She had her walker parked until this morning. Saturday when we went for our walk she was having trouble with just a cane. With the walker today it went well.

- I have no changes to report. Nothing really changed for me after Poland, except maybe a little clearer head and more frequent symptom fluctuation. I am starting to think about a round two angioplasty. I'll be a little more aggressive this time (as I declined a stent in Poland).

- I am wondering if they will put in a second stent? I would probably get a second one if I could. My energy seems to be slipping away which saddens me. I do not want to go back to where I was before Poland. However my body seems stronger and my walking has remained good.

- In my case (SPMS for 3 years), I saw some improvement in vitality, walking, libido, erection and warn hands and feet for about 10 days. Except warmer hands and feet, all is gone now. Why, I really don't know. I had no stenosis but faulty valves. Was it a placebo effect, or will the effect of the treatment amount to nothing more then stopping the disease? Or are the valves screwed up again, I just don't know. Only time will tell and I guess no one knows!  I intend to go back to Tyche for follow up in October.

- You mentioned warm hands and feet, something I had wished for but alas that never came to be. Still there are little pluses I hope will stay. A return to Poland is not in my plans, hope to find a place closer to home for any further tests. If this will stop progression that would be great.

- I experienced some positive symptom relief and then lost some of the improvement. But right now I'm doing better than before the procedure. And I feel that I know what works to improve my health if I need to get some kind of treatment in the future.

Doing Better - Sunday, August 15

Just to let everyone know that I'm doing better.  My energy level is back and I have less stiffness.  My neck is better.  I guess those 100 sit-ups I did on the ab rocket were not done properly!  I will definitely pace myself this time around and only do weight-bearing exercises.  I do have an in-ground heated pool which I was in yesterday.  I know this is the best exercise! 

I'm walking better but I have a lot of pain in my left foot.  I went to see a foot specialist who recommended some custom moulded foot orthotics and a good supporting shoe. Although my foot x-ray looks great except for a bit of arthritis, my foot arch totally collapses in when I stand.

Not a Good Day Yesterday! - August 8th

Yesterday I was supposed to go to a BBQ Party at my friend's place in Ottawa.  I woke up yesterday morning feeling tired and achy.  Tired, because I did not have a good sleep as my left foot had shooting pains in it during the night and achy with a sore back because I think I overdid it with 2 days of exercise. 

I have been having problems with soreness and swelling on my left foot for over a year.  I had an x-ray taken and saw a specialist.  He says that I need orthotics because of the way I walk and I have very flat feet.  He also says that my x-ray shows some arthritis near my big toe. My foot does crack sometimes when I walk!  Not sure what that is about, maybe it is so used to being dragged that  it cracks when I do try to walk on it.

Well I had every good intention of going to the party and was hoping that my body would be more cooperative as the day went on.  My husband was working on the shower in the basement and I was going to use him as an excuse for not going to Ottawa but the truth is I did not want to show up at the party struggling.  Since I have not seen many of these friends that were going to be at this party and they contributed financially to my procedure, I did not want to let them down.  I wanted to walk in with my cane without using my husband's arm for support. 

I guess I should be content for the improvements so far and stop worrying about everything else.  I know this is still an unproven treatment.  But based on many positive testimonials of people who have had the procedure, I was hoping for better results so far.  I know it's still early and I have not been able to walk unaided for quite some time.  I have to remember that I originally hoped to simply halt the progression and that any other benefits would be a bonus. 

I made an appointment for Tuesday to see a podiatrist.  Maybe he will be able to help me with my foot.  I will let you know how it goes.

4 weeks today since my procedure

Well today is exactly 4 weeks since I have had my liberation procedure in Tychy, Poland!  I continue to see improvements every day.  Yesterday, I was talking on the portable phone and walking with my cane into the living room.  It was my husband who pointed out to me what I had just done.  Previously I had to sit down to talk on the phone, never could I have walked and talked at the same time, let alone carry a phone.  

I am so happy to have this increased energy.  I know I must not overdo it but it feels so good.  On Wednesday I did 4 loads of laundry and still had the stamina to take a shower before settling down to watch TV. My problem is still my left leg.  Every day I try to lift it when I walk rather than just dragging it. I still struggle to try to lift it.

Yesterday I got an appointment to do a follow-up doppler ultrasound on Sept. 24 in Barrie, Ontario.  This will be done by a technician who has been trained and follows the CCSVI protocol.  The technician  works with Dr. Sandy MacDonald who is a vascular surgeon.  He is the one who appeared on W5.  He has used his own funds to test and study CCSVI in MS patients and has spoken to Parliament to have this treatment funded.  I am so happy that I can at least get this follow-up done in Canada although it would be nice to go back to Poland as we had such a nice trip!

So far 2 other people with MS from Cornwall have their appointments in Tychy, Poland at the end of August and another lady from Calgary goes at the beginning of Sept.  I'm also waiting to find out the dates for another 2 who have asked to get the procedure.

I continue to stay in touch with the group who were in Poland at the same time as me and I am happy to report that many have continued improvements although some more than others.