Erika`s procedure in Poland

[Pepe]

Hi Erika and Steffi,
Sorry for you Erika. Happy for you, Steffi. Maria is doing well since January 18th. No more wheelchair since then. The most important improvement is fatigue. She can walk with a cane 2-3 km. whithout fatigue. Of course, she has MS symtoms and probably she will have symtoms for the rest of her life BUT her situation now is much more better than before the OP. We have been is Katowice on July to a follow-up visit and there was not reestenosis. Dr. Simka was as friendly as ever.

All the best to you (((Erika)))!!!
All the best to you (((Steffi)))!!!

Pepe and María.

[ErikaSlovakia]

Thank you Steffi, Pepe and Maria!
Well, it looks more job is waiting for me
I am so tired of life ...
My life was nice until I was 6 years old. Since that time it is just constant stress.
I will inform you about the Symposium in Hight Tatras.
Erika

[ErikaSlovakia]

11 months after my procedure in Katowice

There are no big changes from the previous month. I feel the same as before the procedure except my nerve pain is better. I take 450 mg of Carbamazepin a day. I am not worse, I do not have any new symptoms.
I for sure have not had any relapse.
My main problems are fatigue, sleepiness, heat intolerance and brain fog.
My pulse is still very high - around 120 -130. But is is jumping also depends on how many mg of pills I take.

My stent is fine, without blood clot, without hyperplasia. My blood flow is very slow but maybe it is not a problem at all. Anyway, it is better than before: I had complete blockage because of pathological valves.
So right now I cannot do anything. I still take 50 mg of Aspirin and 4,5 mg of LDN.
Erika

[CureOrBust]

My pulse is still very high - around 120 -130. But is is jumping also depends on how many mg of pills I take.

Is that your resting pulse?

[ErikaSlovakia]

My pulse is still very high - around 120 -130. But is is jumping also depends on how many mg of pills I take.

Is that your resting pulse?

Yes, it is my resting pulse - very often. I do not understand why it is so high. I take 80 mg of Isoptin in the morning and 80 at lunch time. Sometimes I must take som in the evening because my heart is running so fast that I can not fal asleep.
Right now my BP is 161/96 and my pulse is 107. I have no idea why. I am just sitting whole morning at the internet.
I am going to take 5 mg of Lisinopril now and 80 mg of Isoptin.
I have no idea why is it so.
Erika

[Zeureka]

My blood flow is very slow but maybe it is not a problem at all. Anyway, it is better than before: I had complete blockage because of pathological valves.
So right now I cannot do anything. I still take 50 mg of Aspirin and 4,5 mg of LDN.
Erika

I still wonder Erika, why your blood flow very slow... I have a friend that will go to see Dr Beelen for a CCSVI doppler-stent-check and consultation in Belgium mid October. He also had a stent in left jugular due to complete blockage, but no improvements so far. Would say from seeing him this summer, is similar case as yours - no wheelchair and just walking a bit slower maybe - but symptoms not really visible. He has fatigue/brain fog/sleepiness since 9 years...

At first in April he had only angioplasty but the vein restenosed immediately and he had a relapse (so in June he returned for a second intervention with Simka to place a stent). However, still no improvements so far - and 2 weeks ago he also got another relapse.

Main issue for him that the fatigue/sleepiness/brain fog just remaining same and now he got a new sensivity relapse in legs/feet and back burning.

Lets see what Beelen proposes to do. I know Beelen in venography does not only check 2 jugulars, 2 vertebrals and azygos, but also the iliac vein. He enters also from the right side as Simka, but before going up with the catether first checks the iliac vein on the left side and then moves up.
I will let you know mid October whether he will recommend my friend to do another venography to include all those veins or whether there has maybe been a problem with the stent...would also interest me - in view of your case - if blood flow in his case at the place of the stent still slower or normal now. I will inform him of your case, so he can ask the doctor.

And nearly forgot to give you the good news: I have been to Dr Beelen this week for doppler-check and had no restenosis. My blood flow in both jugulars perfect and Beelken could see in the doppler where the ballooning had been applied - there was also a piece of valve still visible in my left jugular, but the rest of the valve still nicely squeezed to the wall. Beelen told me that the decision not to place a stent in my case had been a good one, as the place first of all where the pathologic valve was located (in junction with the brachiocephalic vein) might have been problematic, and also, since did not have restenosis in 4 months the applied ballooning pressure seems to have resolved the issue - so stent in my case was not necessary. He told me that the chances for restenosis now after already 4 months that have passed by are very small (if understood well, he said 0.1%)...and he would think it would only be necessary for me to come back for another doppler-check in case of a relapse. Otherwise I should be fine! Lets hope so!

[ErikaSlovakia]

Dear Steffi!
Thank you very much for your report!
I think the blood flow is not the only problem in MS. However I think it should be fixed and patients should be aware to have follow-ups.

It looks I have the same problems as your friend. Even my back and shoulders are burning very often - for example right now.

Did you know about this?: http://www.ncbi.nlm.nih.gov/pubmed/11315981
(224% higher!)

Erika

[Zeureka]

Endothelin-Plasma levels higher in MS patients, no did not know!

By the way Dr Beelen who at first when started his research was a bit sceptical, is now convinced that the improvements seen in MS patients after procedure are not placebo. He said the statistics curve of research results seen on reported improvements from his patients in time is different from a typical placebo effect curve (known in statistics).

He explained that some patients seemed to report higher improvements in start and then less improvements with further time, as the effect in start would obviously be perceived more strongly - from the contrast of the feeling bad before and better afterwards. And that with time, the maybe even if only suttle or stronger difference would no longer always be perceived. Lets say one could get used to the the new level of feeling, since the improvement rarely up to a 100% and if improvement in intensity for example was 20-30% after a while you no longer perceive that this 20-30% has taken place as you still have the 70%...

He gave me the example of a rather disabled patient that after the procedure was so happy could again brush his hair (which he was no longer able to do before) and walk a bit better. After 6 months he saw the patient again and asked how are you doing? The answer was, well not very good...but I asked: Dr Beelen, but could he still brush his hair and walk a bit better? The answer was: yes, but his problems were unfortunately not yet all resolved as he still could not walk much much better and still had other motoric problems. However, the two slight improvements were still there...and fatigue better as well.

So seems we are expecting a lot, but CCSVI will only resolve part of it...but isn't that part already an improvement? Even if only the progression would be stopped or slowed down by restoring blood-flow, I'm happy I did it!

So yes, blood flow does not resolve everything in MS (and in my view in particular not the symptoms that are there since longer and myelin damages unfortunately take much longer to repair), but also doctors that were sceptical in the start now understand that there is an impact by seeing it with their own eyes on their patients.

[ErikaSlovakia]

I am not complaining, I am not sorry at all, I would do it again.
Every journey starts with one step and Rome was not built in one day...
Erika

[Zeureka]

Yes, Erika, seems you could open a dizzy-MS back-burning club together with my friend. I'll inform him so he can ask the view of Dr Beelen and lets hope there can soon be found some solution for your cases! Me not really falling out except that I got my dizziness resolved (but in my case I had the strong relapse of instability 5 years ago - so did not have that symptom non-stop since 9 years, could that be the difference?).

My friend is also following all stem-cell developments closely. He has been to China for stem-cell-therapy already twice, oh gosh..., but all for nothing with NO EFFECT. However, there is now a new technique with embryotic oligo-dendrocytes underway just a question whether Obama will get de-blocked so that research can move on.

[ErikaSlovakia]

1 year after my CCSVI procedure in Poland (EuroMedic, Katowice).
I feel the same as before my procedure. My main problem is and was fatigue. It depends on how much action I do during the day. I am not worse, I do not have any new symptoms. I have not had any relaps. I had more energy only the first 33 days. I still take LDN. Never on DMDs. My stent if fine, without a clot, without intimal hyperplasia. My blood-drainage is very slow but it was zero before.
I DEFINITELY would do it again!
Erika

[ErikaSlovakia]

13 months after my procedure in Katowice.
No news. I feel the same as before my procedure.
My main problems are fatigue, sleepiness, dizziness, weakness, vision problems, brain fog, headaches, being clumsy, problems with balance, neuropathic pain in my right arm, panic attacks, problems with sleeping, sensitive to weather changes, problems with memory, not able to concentrate...
I still walk with one cane, I still take LDN, still waiting for more research.
Erika

[HappyPoet]

13 months after my procedure in Katowice.
No news. I feel the same as before my procedure.
My main problems are fatigue, sleepiness, dizziness, weakness, vision problems, brain fog, headaches, being clumsy, problems with balance, neuropathic pain in my right arm, panic attacks, problems with sleeping, sensitive to weather changes, problems with memory, not able to concentrate...
I still walk with one cane, I still take LDN, still waiting for more research.
Erika

Hi Erika,

Thank you so much for this update. I've been following your story since the first time you posted here. You'll never know how sorry I am that the good outcomes didn't last for you which is not fair because you're such a sweetheart who helped everyone who asked you questions -- and wow, you sure were asked A LOT of questions!

You inspired many people across the world with your nothing-will-stop-me attitude. Also, the cause of CCSVI was greatly helped when you participated in the wonderful TV news interview by allowing your liberation to be recorded. For me, personally, seeing you so calm during your venogram took away my fear of the procedure itself.

What a trailblazer you were! It's so hard to believe that 13 months have passed since your liberation. I'm three months post-liberation and am in an exacerbation, so regarding CCSVI, I'm just going to ride out the next year or two "waiting for more research" just like you.

But I've also been trying chiropractic medicine (Atlas Orthogonal) which has helped greatly by stopping the numbness in my feet by 100% and by reducing my MS Hug symptoms by 75%. I still have some other neuro symptoms, but given time, these might be helped, too. Perhaps you could try chiro if there are any in your country. This is a terrific thread by Dr. Flanagan that you might find interesting: CCSVI and CCVBP.

Wishing you the best of luck, Erika. Thank you for everything. Stay in touch!

~Pam

[ErikaSlovakia]

Perhaps you could try chiro if there are any in your country. This is a terrific thread by Dr. Flanagan that you might find interesting: CCSVI and CCVBP.

Wishing you the best of luck, Erika. Thank you for everything. Stay in touch!

~Pam

Dear Pam!
Thank you for your nice post.
It was a real challenge to find a good chiro in my country as they officially do not exist. Of course I found him. I already have an appointment Jan 5.
I know for sure I need his help. I was born with difficulties, well they had to pull me out as I just did not want to go out - I know why now
I was born with abnormal rotation of my head. One doctor had to fix my neck when I was 11. I see it on my MRI results that I have more problems with my C spine - not only my 3 MS lesions.
I follow Dr. Flanagan's site since the beginning.
I will inform you about the Slovak chiro doctor and my fun there in January for sure.
I am also having an appointment with my friend who is infectologist. She will test me for lyme again including Western blot in 2 weeks, just in case. We have a lot of lyme in my area.
Erika

[HappyPoet]

Perhaps you could try chiro if there are any in your country. This is a terrific thread by Dr. Flanagan that you might find interesting: CCSVI and CCVBP.

Wishing you the best of luck, Erika. Thank you for everything. Stay in touch!

~Pam

Dear Pam!
Thank you for your nice post.
It was a real challenge to find a good chiro in my country as they officially do not exist. Of course I found him. I already have an appointment Jan 5.
I know for sure I need his help. I was born with difficulties, well they had to pull me out as I just did not want to go out - I know why now
I was born with abnormal rotation of my head. One doctor had to fix my neck when I was 11. I see it on my MRI results that I have more problems with my C spine - not only my 3 MS lesions.
I follow Dr. Flanagan's site since the beginning.
I will inform you about the Slovak chiro doctor and my fun there in January for sure.
I am also having an appointment with my friend who is infectologist. She will test me for lyme again including Western blot in 2 weeks, just in case. We have a lot of lyme in my area.
Erika

You are so cute! Your words highlighted in bold above made me laugh out loud! Yes, of course, you, our unstoppable Erika, found him, the Slovakian chiropractor who could not be found.

I'm so sorry that you have lesions on, and other problems with, your cervical spine. Aren't lesions enough for us to have? Why must we also have other problems? Or, maybe it's those other problems that are causing some, or all, of our lesions. So smart and lucky girl, I'm very glad you've been reading Dr. Flanagan's thread.

I believe Dr. Flanagan will be very interested in your case because of the way you were born and your corrective surgery, so I really think you should copy your post above to a new post on his thread: CCSVI and CCVBP.

Also, very smart of you to want another Lyme test and to see an "infectologist" -- we say "infectious diseases doctor," but I like more the name you use.

Will look for your updates!

~Pam