I just heard a disturbing story from a friend who's friends just returned from Poland for the Liberation treatment. Apparently out of all the 18 patients that were there that particular week, not one of them noticed any positive changes after the treatment. The friends are quite unhappy and telling everyone they know that they were basically burned for ten grand. Whether this story is true or not it does bring up a good point.
Dr's Simka and Ludyga have never promised anything from this treatment. They state that they are hopeful it will help MS sufferers but it is too soon to say. They are performing the treatments based on anecdotal evidence and compassion. When I went to Poland for my treatment I was still skeptical about the whole thing. I told myself that if it would just stop my progression and attacks I would be satisfied. Once I had the procedure I noticed many of my baseline symptoms lessen or disappear. These were bonuses!
Had I not received any of these "gifts" I would be anxiously waiting to see if I got any more attacks or became sicker over time. I would not be bashing the Doctors at this point. I think everyone who is planning on going for treatment should have the proper frame of mind beforehand to avoid any possible "let downs" post op. There are no guarantees except that your blocked veins get opened up and proper blood flow will be restored. You have a 50% chance of re-stenosing as well. There is also a chance that the bonuses are just placebo effect too!
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Ginger,
ReplyDeleteThanks for continuing to be the voice of reason! I am of the same mind - I want the treatment, it appears that research is showing it stops progression & if I can stop getting worse and have some bonus side effects, I'm all over that and it will certainly be worth the thousands of dollars to not get worse than I am now!
I think mine are... I realize some people see no benefit to their existing symptoms. I'm hoping it will make a difference but if it doesn't I know that can be expected and I'll be crushed but realistically I know that is just how it can be...
ReplyDeleteyup, we want this disease to back off, and we HOPE that we can get some other bonuses, but mostly we want to live. I wonder if there is anyway to verify what you were told that the entire group didn't notice a thing, it sounds a little off.
ReplyDeleteTreatment helped me a hundred times more than I thought that it would. I was hoping to lose half my fatigue and half my pain. I also hoped that my disease would stop progressing. If my only relief was one of these things I would have been satisfied. Well, all of these are gone and then some I didn't even know were MS. Keep your expectations rational and you will be happy. I am also aware that my vein may collapse. The thing with those people is that they probably are seeing things for the positive, just not realizing it yet.
ReplyDeleteI am to have the Doppler Ultrasound test on June 2nd, then IF stenosis is found, I will go on to the venogram. I am extremely dubious in hearing that all 18 patients did not experience any benefit. Sounds like propaganda.
ReplyDeleteThis is the first time I have heard a statistic of that great a number of people having no benefit at all. Perhaps the story needs to be double checked?
It sounds a lot like the lie being spread about "two people dying because of liberation".
Also it depends on the type of MS. Even Zamboni said SP and PPM receive little benefit from this.
I am going into my own treatment with a sense of reality though and grounded, thanks to my conversation at my appointment with Dr. Lee. I am going in as a pessimist and skeptic.
I would like to see more info on these EIGHTEEN PEOPLE. Sounds suspect to me. Coincidence? Yeah, where were these done? That would speak volumes. I certainly am not expecting anything beyond proper blood flow and circulation. You cannot tell me that there would not be signs from this alone. If the diagnosis, testing and treatment were done to protocol, how could improvements not be noticed big or small? Sorry Ginger but does it not sound suspect? WHO GOT TO THEM? Cynical? Me? You frigging betcha!
ReplyDeleteI also believe someone got to them or the tests were not done right??? Much more info is needed to draw a conclusion about these 18 people. I find it almost irresponsible of you to post such small amounts of hearsay, you should know better than to post little info. Remember the 5 w's before you post, Zamboni and crew can answer all 5 of them. And you know as well as I they make sense. I to want the treatment if stenosis is found and do not expect more than to be able to have normal blood flow from the procedure. I have enjoyed reading about your journey, and hope to read more about your personal experiences.
ReplyDelete@ Shirley- I know two folks who were there at the same time! This is what I can't understand! My two friends had wonderful results.
ReplyDelete@ Ang-Unfortunately this is NOT heresay. I have the e mail from George in my hot little virtual hand. I am sharing this info to open people's minds so they wont have the wrong expectations before treatment.
ReplyDeleteJust so you all know. This am I fwd all the information to Euro Medic Poland complete with the 5 W's.
ReplyDeletehey Ginger,
ReplyDeleteSorry for the heat .. goes with i 'spose..and i suspect you can handle it.. Wonderful news from your physio.. go go go
Are you still planning a trip out west? My phys sib asked yesterday.
Cheers,
Patti
If the tests are going to be done right Poland is the place where it will happen. It also remains to be seen how long after the procedure the patients reported the 'no improvements'. It is quite common for nothing much to be noticed for the first few days. In fact we were told not to expect much for the first 5 days. This proved to be correct, not everyone has miraculous recovery on the table...
ReplyDeleteI agree with that Ginger, I think a lot of people expect immediate change. For me, I wasn't sure what I would expect. Secretly, I wanted complete change, but I knew that wasn't probably going to happen. Most of our group had little or no change, but the neurologist and others there at the clinic were VERY clear to not expect immediate change. For myself, I noticed that over 24 hours, my hands became warmer, and now they are consistently warm. But, that took time, they first started warm, then got cold, back to warm, back to cold and so on. Now they are so warm it feels like I'm wearing winter gloves in summer. The people that met me (other patients) said that I had more color in my face than when they had met me. I had hoped the bladder symptoms and numbness would have left, but they are still here. But, again, maybe that will take time. The day post-procedure, I still had my limp (which I had newly gained a few months prior). I found that disappointing as well, but the next day, I found my limp had gone.. so that took almost 48 hours to occur. So, what I'm trying to say, is this is a process.. you may gain some things back, you may not. We all have to wait it out. I do not think they are just 'grabbing money' from people. I don't not think this is an exact science yet to be able to determine whom it will help or not help. Days later after the procedure, some people noticed symptoms were not there that had been there for years, little things. So little improvements are still encouraging. They are things you may not hear about, esp when people are saying that there are no improvements noticed once you are done the procedure.
ReplyDeleteGinger, do consider yourself fortunate however. I noticed in your procedure you were nicely covered up for the procedure, and I was expecting the same. Sadly, once you get in there.. the gown gets fully opened and you stay exposed to all during the entire process.. So much for any modesty ha ha. And, if I recall, (in the CBC documentary) docs talked during the procedure to you on what was happening. We didn't get that privilege. The only words spoke to me were "hello" and "it is finished".
So glad to be home, but greatly miss that strong coffee served in the cafe in the hotel! I know I'm headed for withdrawal :) Thanks for all your info Ginger.. the next group today (that we met before we left) is mainly from Calgary. So many Canadians are heading there!
Thanks Dawna and CONGRATS on your liberation! What many folks fail to realize is that the treatment is not going to immediately take care of all the problems. If Zamboni's theory is correct, the blockages are just one factor in the cause of MS. Other things like environmental issues, vitamin D deficiency etc. all contribute to the degeneration of our bodies that we call MS. SO when we have the treatment we take away only one of those factors. This is why i am on Ashton Embry's MS diet now and going to physio and working out. I am closely monitoring my vitamin D intake as well. I believe if we can eliminate as many causal factors, the healthier we can become. One thing to remind ourselves is that a lot of our symptoms took time to come on and so to expect them to go away over night is illogical.
ReplyDeletePS I did give the camera man a boob shot by accident at one point but they edited that out, thankfully! lol
ReplyDeleteha ha.. good to know. (Although I think I would have preferred the boob shot to complete exposure like the rest of us do). I would have also LOVED to have a nice warm blanket after the procedure, much like one gets after having a baby. That would have be so nice as it was SO cold in that room! It is so fun to have had your procedure video taped, Ginger. Something you can look back on and get greater perspective on what happened during that time.
ReplyDeleteTOPIC 1: 18 PEOPLE NO IMPROVEMENT ?
ReplyDeleteTOPIC 2: TOTAL EXPOSURE
........
Topic 1: This is the strangest thing that I`ve read in quite some time. First of all, I was there last week. I was "liberated" on May 18th with my friend Francine from Montreal. During that week, I met almost everyone who had the procedure, and most people saw pretty good improvements. I remember my wife crying when the guy next to me with primary progressive MS could stretch out his hand and give a good hand shake 30 minutes after the procedure.
As for me, I could almost immediately move my toes, which I had not done for 2 years. I lifted my leg and the spasticity was GONE ! It`s been a week, and I see daily improvements. I feel like I did 5 years ago when I was forced to stop working. The fatigue and brain fog have diminished significantly. I met a friend from France who was there, and his walking improved daily. I also met a Dutch girl and her dad, and another family from Holland. Everyone I met that week up until Thursday morning when I left, had seen some improvement. I just don`t get this comment. It is simply not true. I also had a conversation with the author of this comment, and he was so optimistic...I wonder if the neuro got to him with the little useless speech that he gives to all patients at the end. He told me it was probably the "placebo" effect in my case.....yeah, like I have nothing better to do with my life than to pretend being sick. If it were the placebo effect, then I deserve a grammy for my acting abilities for the last 10 years.
TOPIC 2: TOTAL EXPOSURE
........
Well, I thought that I had done a pretty good job shaving "down there". Was I ever humiliated when the nurse came with another raser and started shaving even more, exposing my family jewels to the world. And I was in fear of the blade slipping, and instead of becoming a "liberatti" I could have become a "castratti". That would have just been perfect; go to Poland to be liberated and end up a male soprano ! Anyway, there was a film crew there filming the entire procedure, so I wasn`t exposed too much either, thank God !
Cheers....and Ginger, you keep the blogging. I`m just swamped with phone calls and e-mails, and enjoying the "liberated" life.
Hi Again,
ReplyDeleteBumping up my previous post..:) will you be heading west?
Thanks,
Patti
Hi Patti-We plan to just dont know when yet. My hubby is looking for a job right now.
ReplyDelete@My Journey to Liberation-Thank you for your help. I did not mean for this to become a witch hunt. I was just using the story as a basis to write a blog about too high expectations pre op and some readers got upset because they thought I was talking about hearsay. What they failed to realize is that whether the story was true or not was NOT the point and that the details of the email involve several people and I was respecting their privacy.It just seems so selfish and spiteful for this guy to write a letter like that.
ReplyDeleteI recently had the Liberation procedure in Poland with Dr. Kostecki.
ReplyDeleteI went into this entire adventure with realistic expectations. I've had MS for 31 year, my left leg has not been working for 31 years - in my mind it was unreasonable to think I would be running a marathon the next day.
Many of my symptoms have lessened and or disappeared, but my leg still doesn't work. Many of my successes are not visible - bladder, l'hermittes, swallowing - and people say I don;t see a change - but I know the changes are there.
I'm thrilled because my expectations were met and as time moves on, they are exceeded.
The Blogs are great, but often you only hear the good news stories - which is great too, but I think that sometimes that fuels unrealistic expectations. I just would like to say to everyone, please this about what you're expectations are - many things don;t show up right away, but overall the biggest bonus is that hopefully this procedure stops the progression and if that was "all" I got, I'd be estatic.
My husband and I are planning to go to India for the Liberation treatment in early August!! Does anyone have anything to tell me about these procedures being done there!!!
ReplyDeletemariansilver@hotmail.com Thanking you in advance
I plan to go to Madiro, Mexico in April of 2011. I have Secondary progressive 'according to the wisdom of the neurologists'. Who has had success with 2 MS out there?
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