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

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:  http://www.youtube.com/watch?v=Uk2CGHtVQWk&feature=channel   After:  http://www.youtube.com/watch?v=IAfU6NCuYCo

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!

WHAT ARE THE COSTS?

PRICING:

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.

HOTEL:

Found a link to our hotel in Poland – Arena Hotel in Lychy

http://www.hotelarena.com.pl/index.php?t=start - on website - click on second round button in top right corner for English.

HOW TO GET ON THE LIST TO SEE DR. KOSTECKI IN TYCHY, POLAND

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: biuro@europanostra.com.pl

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:

http://www.ncbi.nlm.nih.gov/pubmed/20351666

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.

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 - http://www.thisisms.com/ftopicp-123488-.html#123488

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!

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 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

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

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.