Monday, December 13, 2010

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.

Friday, December 10, 2010

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.

Saturday, December 4, 2010

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!

Tuesday, October 26, 2010


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?

Tuesday, October 12, 2010

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:
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:

Tuesday, September 28, 2010

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

Thursday, September 16, 2010

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. (949) 221-0128 and 221-0129

Friday, August 27, 2010

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.

Thursday, August 26, 2010

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 - (  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 -

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
Part 2

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:

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:  To read what other people have said about him, go to this link - -

Friday, August 20, 2010

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.

Sunday, August 15, 2010

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.

Sunday, August 8, 2010

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.

Friday, July 30, 2010

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. 

Wednesday, July 21, 2010

Wednesday, July 21, 2010

I know this is my first post this week but I have not had anything new to report.  I went swimming on the weekend and it felt really good.  This morning my daughter had me do exercises to stretch my muscles.  I'm still feeling energetic and when I do things it does not feel like it takes such an effort like it used to prior to my procedure.  My balance is still much improved.

While in Poland, I met Martin from the UK.  He had his procedure (two angios but no stent) the day prior to mine and he posted today on YouTube.  Here is his before and after videos.  I find that there is a marked improvement.  Before:   After:

Friday, July 16, 2010

Friday, July 16

Today I have a lot of energy, as you can see by all the new blog updates !  I'm still walking around the house with just my cane instead of my walker.  I even put my running shoes on so I could practice lifting my feet to walk instead of dragging them.  Looking forward to the weekend!



This is what it cost me in Canadian funds: 
Cost of procedure including deposit was $5,775 - $300 refund since I did not require a stent = $5,475  (13 000,00 PLN - $1 000,00 PLN refund)

(This included 9 nights - double room at the Hotel Arena, our breakfast and the transfers to the airport and appointments - Doppler ultrasound examination / Vascular surgeon consultation - MRI examination and neurological consultation)

Airfare was $3,517.  I believe there are cheaper rates if you book earlier and you don't mind a few transfers.

So we spent a total of $8,992 + our food, drinks and sightseeing.
We paid a deposit of $1,450 Cdn before leaving by bank transfer (all this information will be sent to you) and we paid for the balance by credit card at the clinic before I went in for the procedure.


Found a link to our hotel in Poland – Arena Hotel in Lychy - on website - click on second round button in top right corner for English.


Katherine Franek who works for a Travel Agency – Europa Nostra is the person who you need to contact to arrange everything with. Her e-mail:

Her phone no. is: +48 32 3273295. She is usually in her office from 11 o'clock.  Please note that they are 6 hours ahead of us.

I saw Dr. Kostecki who is a full time vascular surgeon.

Here is an e-mail he sent to someone:

Phlebography is the first step of the procedure- we inject the contrast into the vein in order to see the stenosis or other disorders. Travel agency has all details you need, I mean dates, times and so on. Of course we check azygos vein. Dr Kuczmik and me perform this procedure in the Silesia Medical University as a grant. Dr Waclaw Kuczmik is the best Polish interventional angiologist and vascular surgeon so you will be in a good hands You will not pay me nor dr Kuczmik but to Clinic.

Here is a link to an abstract in the medical journal that shows Dr. Kostecki as part of the study:

My Procedure - Page 3

Finally, they go back to the right side. The pass the balloon and after confirmation with the doppler, it stays open and there is no need for a stent!

My Procedure - Page 2

The next 6 pictures are of them checking the left side - They told me that the flow was good and that they might be able to increase slightly but that ballooning the vein was a far greater risk that increasing the flow by such a small percentage

Continued - Back to the right side on page 3

My Procedure - Page 1

Today I'll talk about the procedure that I had done.  Here is a summary of what they gave me - of course it is in Polish!!! 

Opis zabiegów:

PTA żyły szyjnej wewn prawej
W znieczuleniu miejscowym nakłuto prawą żyłe udową. Wprowadzono wstecznie koszulke 7F. a nastepnie wprowadzono cewnik do prawej zyły szyjnej wewn podano kontrast i stwierdzono zwężenie dystalnego segmentu zyły szyjnej z zwolnieniem znacznym przepłrywu. Wykonano PTA balonem o średnicy 10mm (12atm, 3min). Kontrola flebograficzna poprawa przepływu podobnie jak w badaniu ultrasonograficznym. Nastepnie wprowadzono cewnik do lewej żyły szyjnej wewn wykonano flebografie tej żyły uzyskują obraz niewielkiego zwężenie na poziomie zastawki w ujściu żyły szyjnej wewn. Z bardzo miernym zwolnieniem przepływu. Zacewnikowano zyłę nieparzysta - w kontroli flebograficznej niewielkie zwęzenie w poksymalnym segmencie bez istotnego hemodynamicznie zwolnienia przepływu. Usunieto koszulke hemostaza opatrunek uciskowo.

Translation from Google:  If you know someone who is Polish and can translate this better for me, it would be awesome!

Description of procedures:
PTA right internal jugular vein
The local anesthesia nakłuto right femoral vein. Introduced back 7F t-shirt. and then put a catheter into the right internal jugular vein was given the contrast and narrowing of the distal segment of the jugular vein przepłrywu considerable relief. Taken PTA balloon with a diameter of 10mm (12atm, 3min). Flebograficzna improving the flow of control as in ultrasound. Then the catheter was introduced into the left internal jugular vein and the vein was performed flebografie get a small picture of mitral stenosis at the mouth of the internal jugular vein. With very moderate relief flow. Zacewnikowano vein odd - in the control of small flebograficznej poksymalnym segment stenosis without hemodynamically significant relief flow. Removed t-shirt dressing on pressure hemostasis.
On my discharged papers they had the following in English:
Patient admitted for scheduled jugular veins angioplasty.  The right sided procedure was successfully performed.  There was no postprocedural complications.  Patient discharged with recommendations concerning further treatment.
Here are some pictures that I selected from my procedure CD where you see everything moving and flowing!
I suspect that in the first three pictures, they are checking my azygos area!

In the next 2 pictures, they are checking the right side, from what I understand, they see flow problems here but since they can only use 1 stent and the tests prior to procedure only showed problems with the left, they are not attempting to balloon until they check the left side.

Cont'd on Page 2

Wednesday, July 14, 2010

Wednesday, July 14.

Today is a good day.  I no longer feel sluggish and had lots of energy to do the laundry.  I was supposed to take advantage of this beautiful hot sunny day and get some more swimming in but ended up using the excuse that I got enough exercise with just doing the laundry!! 

I am receiving many calls from people who are interested in getting more information about my CCSVI procedure.  Too bad Canada will not do this procedure, as I heard it would only cost $1,500 for our Canadian health system to perform the angiogram.

I checked the place where they are doing it in Albany, N.Y. and they have a waiting list of 800.  The doctor who is performing it is called Dr. Siskin.  Here is a link of the forum where this one guy just came back and documented his experience -

Tuesday, July 13, 2010

Tuesday, July 13

Well the headaches only lasted a few days, but am I ever bruised! The injection on my stomach yesterday bled and is now bruised the size of a small orange. Well only four injections to go and another 2 weeks of plavix!! I asked my GP this morning whether I should get bloodwork and he said no. I also asked if he thought it would be a good idea to continue with a baby aspirin to keep the veins flowing and he said that aspirin did not help with veins! 

I noticed the biggest improvements last week, but this week I'm more sluggish. I went to see my GP this morning and I was a bit dissappointed that I could not show him any improvements.   According to postings from other people who were treated in Tychy at the same time as me, many have noted some minor improvements but one said that although his mobility was better after the procedure, it is not as good now.

I guess I'm disappointed that I'm not experiencing the improvements that I saw on the before and after testimonials of some people but I have to remember and keep telling myself that my body now has this new increased blood flow and it will take time to heal itself!

Monday, July 12, 2010

The Hotel Arena

Hotel Arena - Entrance

Our room with two single beds - rooms with double were all taken given the large amount of people that were there that week

Outside gazebo

Our first night having a meal in the dining room

Breakfast in the morning

Awesome service
Celebrating Canada Day in the Lobby
Having pizza out by the gazebo
Lounging in the Lobby
Dr. Kostecki makes a visit to the hotel to give us copies of our tests

Pictures of the clinic where we had the procedure

Not very nice from outside but very modern inside
Clinic Reception
Settled in and waiting
Being taken for procedure
Friend (Bart) managed to get some photos of procedure room

Pictures of the doctors, coordinators and drivers in Tychy

From left is the driver Darek, Kate, the coordinator and her boyfriend Christopher and the other driver Raphaoul (not sure of spelling!)

Dr. Kuzmik
Dr. Kostecki

Monday, July 12th

It's Monday and I know that I haven't posted since last week and you are probably wondering how I'm doing. Well, sorry to say that I'm not as good as last week. It seems the energy level is down, not as low as it was before, but not as good as last week. I spent the weekend in the pool since it is so hot outside and my arms and legs are sore from threading water with the help of a noodle. I feel numbness in my right lower arm which I don't remember ever having before.

I know it is still early since my procedure and my husband says that I'm over analyzing everything and that I have to give it time. I will post some pictures of my trip to Poland in another post.

Thursday, July 8, 2010

Thursday, July 8th

It's now 9:00 p.m. and I my headache is now just a small dull ache which is wonderful. I have not ventured out yet to see how I can tolerate the heat since my procedure. I will venture out tomorrow since I have errands so I will report back. I'm still feeling fairly strong and can manage walking with just my cane. Although I have been taking it fairly easy, I don't feel like everything I do is a major effort like it used to be.

My sister-in-law reminded me how important it is to be monitored by a doctor since I'm on blood thinners, so I plan on making an appointment with my GP next week. My doctor did tell me before leaving for Poland to go and see him when I got back.

Wednesday, July 7, 2010

Wednesday, July 7

Today I woke up with a headache. I had just a discomfort in my upper neck the last few days but today it is worse. From what I read on the forum, many people get a headache following the procedure. Besides that everything else is still as it was.

I forgot to mention that the doctor put me on the following medications :
Clexane injections - 60 mg for 14 days
Plavix - 75 mg for 30 days
Aspirin - 150 mg for 30 days

I have pills that I usually take at the onset of a headache called "Amerge" but I worry about drug interaction, so I continue to suffer with the headache.

I also read on the CCSVI Facebook group that exercise and diet are so important in keeping blood flowing. So I will follow these recommendations as best that I can.

***Eat a heart healthy diet! Lots of good leafy greens, fruits and veggies. Limit saturated fats (like red meat) and stick to lean, white meat protein. Fish is a terrific choice. Stay clear of man made fats and anything that has too many ingredients (like overly processed foods.) No fructose corn syrup or transfats. Eat a good, whole food diet- like the Best Bet Diet or Dr. Swank's MS Diet.
***Move as much as you are able. Exercise- whether it is a stationary bike, seated exercise, water aerobics or yoga- is good for your circulatory system and will keep blood flowing.
***Try to limit stress. Cortisol, the hormone released when we stress out, closes down blood vessels (called vasoconstriction) Prayer and meditation can really help. Laughter actually opens blood vessels up! Try to find joy everyday...with your children, pets, funny movies, good books.
***Alcohol is OK...but only small amounts. A glass of wine opens up blood vessels a bit...but any more than one drink becomes constrictive.
***Get some sun on your face. Vitamin D helps the body utilize oxygen and is a vasodilator. If you have no sun in your area, try a sun lamp and take a vitamin D supplement.

Tuesday, July 6, 2010

Tuesday, July 6

Well, today I woke up with a sore back. I have not had a sore back since before leaving for Poland. I probably overdid it yesterday with all the laundry and catching up. But the good news is that I'm not feeling fatigued.

A person (drbart) who was part of our group has posted on the forum "This is MS" some information about the group of people who were liberated last week and whether they had stents and/or angios. See the link above "This is MS" if you want to see it.

Monday, July 5th.

Well, my husband and I arrived home Sunday night and after ordering pizza, we went to bed and slept 12 hours. The night before we only had a few hours sleep since we had to get up and leave for 3:20 a.m. Our flight for Frankfurt was leaving Katowice Airport at 6:20.

I woke up feeling more flexible than usual. I was able to walk around the house using my cane rather than my walker. My left foot seems to be straighter and I have more energy and when I took my shower I was able to close my eyes to soap my hair without feeling like falling over

I know that these are just small changes that I'm experiencing but I know that it is still early since it has only been 3 days since my procedure.

I have been liberated

On July 24th I left for Poland with my husband to get liberated by Dr. Kostecki and Dr. Kuczmik in Tychy and had the procedure on July 2nd. The doctors were surprised that it was my right side that had the stenosis since the doppler ultrasound showed flow problems on my left side only. Both azygos were fine and I had ballooning of my right side only. I have a copy of the whole procedure to watch on a CD.

We stayed at the Hotel Arena and I met many people from all over who were there to have the CCSVI procedure. There were people from San Francisco, the Netherlands, Hungary, the UK and many from Canada (Vancouver, Alberta, Manitoba, Ontario, Quebec and Labrador). We shared our stories and made lasting friendships.

I created this blog to keep track of my progress and to share this information with everyone.