Erika`s procedure in Poland

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ErikaSlovakia
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5 months after my procedure in Poland

Post by ErikaSlovakia » Fri Apr 02, 2010 12:47 am

5 months after the procedure.
1. I do not feeel worse than before the procedure.
2. I for sure did not have any attack.
3. I do not have any complications because of my stent – it is in the place where I had my pathological valves.
4. I have more energy but not as much as healthy person – I have more energy than before the procedure.
5. I do not have to push my bladder when I want to empty it.
6. My vision is as bad as before the procedure.
7. My neuropathic pain in my right arm is as bad as before the procedure.
8. After the month 4, my headache is much better – it is not that often and not that strong and not that long as before.
9. I am walking faster and it is easier for me to walk – (after 6 weeks).
10. I am moving faster.
11. My heat intolerance is more than 50 % better.
12. My balance is better but not perfect yet since 7 days after the procedure.
13. I can see clearer – so I think my brain fog is better but not gone – this was my first improvement after my procedure – 3 hours after.
14. I sterted to sleep without sleeping pills 14 days ago (after 16 years!) and it works!
15. I had some setbacks, after 33 days I felt more fatigue again – reason is unknown, but I had low BP because I was taking Lisinopril without checkeng my BP – my BP is almost normal, around 132/85.
Than my flu started after 40 days after the procedure and I was also overworked (I am not working, but as I was the second patient in Poland and the first who started here, you can imagine that I spent 12 hours daily on the internet, often having breakfast at 5PM – I AM NOT COMPLAINING? I AM HAPPY TO DO THAT!!! – now I can see so many posts from people going to Poland – they feel better and it makes me happy!)
16. My problems, but not related to the procedure, but they complicate my health situation: I must take Carbamazepin and Gabapentin for my neuropathic pain – it makes me dizzy, feeling and walking like drunk often, tired and weak, combining it with sleeping pills was a real problem especially in the morning, I had light anemia: my Ferritin level was too low, I was taking iron pills – it is much better now – 36,4. I have vitamin D deficiency, despite I take 1333 IU of vitamin D daily my level is only 7,09 (normal should be 50-80) – you know it is not good for my MS and the symptom is fatigue. I have had hypothyreidosis for 17 years – symptoms: fatigue, weakness, high pulse (yes I have a problem with that, my pulse is over 100, very often 130). My vitamin B12 level is 409,90 – I have an information from Northern America that in Japan and many countries in Europe normal levels are actually 500 -1300, so I will ask my GP for some injections: http://www.westonaprice.org/Vitamin-B12 ... ealth.html
17. I am extremely sensitive to weather.

Any questions?
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

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Dovechick
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Brilliant post

Post by Dovechick » Fri Apr 02, 2010 1:05 am

Erika, Brilliant as usual, this is what we want to hear the good and the bad. And it warms my heart to hear that you have many good improvements. You deserve it and it give us hope that we will all see ourselves or loved ones who have been Liberated making progress.
Thanks you, Thank you from the bottom of my heart.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

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Re: 5 months after my procedure in Poland

Post by ErikaSlovakia » Fri Apr 02, 2010 2:49 am

ErikaSlovakia wrote:5 months after the procedure.
1. I do not feeel worse than before the procedure.
2. I for sure did not have any attack.
3. I do not have any complications because of my stent – it is in the place where I had my pathological valves.
4. I have more energy but not as much as healthy person – I have more energy than before the procedure.
5. I do not have to push my bladder when I want to empty it.
6. My vision is as bad as before the procedure.
7. My neuropathic pain in my right arm is as bad as before the procedure.
8. After the month 4, my headache is much better – it is not that often and not that strong and not that long as before.
9. I am walking faster and it is easier for me to walk – (after 6 weeks).
10. I am moving faster.
11. My heat intolerance is more than 50 % better.
12. My balance is better but not perfect yet since 7 days after the procedure.
13. I can see clearer – so I think my brain fog is better but not gone – this was my first improvement after my procedure – 3 hours after.
14. I sterted to sleep without sleeping pills 14 days ago (after 16 years!) and it works!
15. I had some setbacks, after 33 days I felt more fatigue again – reason is unknown, but I had low BP because I was taking Lisinopril without checkeng my BP – my BP is almost normal, around 132/85.
Than my flu started after 40 days after the procedure and I was also overworked (I am not working, but as I was the second patient in Poland and the first who started here, you can imagine that I spent 12 hours daily on the internet, often having breakfast at 5PM – I AM NOT COMPLAINING? I AM HAPPY TO DO THAT!!! – now I can see so many posts from people going to Poland – they feel better and it makes me happy!)
16. My problems, but not related to the procedure, but they complicate my health situation: I must take Carbamazepin and Gabapentin for my neuropathic pain – it makes me dizzy, feeling and walking like drunk often, tired and weak, combining it with sleeping pills was a real problem especially in the morning, I had light anemia: my Ferritin level was too low, I was taking iron pills – it is much better now – 36,4. I have vitamin D deficiency, despite I take 1333 IU of vitamin D daily my level is only 7,09 (normal should be 50-80) – you know it is not good for my MS and the symptom is fatigue. I have had hypothyreidosis for 17 years – symptoms: fatigue, weakness, high pulse (yes I have a problem with that, my pulse is over 100, very often 130). My vitamin B12 level is 409,90 – I have an information from Northern America that in Japan and many countries in Europe normal levels are actually 500 -1300, so I will ask my GP for some injections: http://www.westonaprice.org/Vitamin-B12 ... ealth.html
17. I am extremely sensitive to weather.

If newbies want to know how the "Poland story" started, you can find it here: http://www.thisisms.com/ftopic-7797-0-d ... ccsvi.html

Any questions?
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

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crocky
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Post by crocky » Fri Apr 02, 2010 3:03 am

Ericka - it is so good to hear how well you are doing - ok, not perfect yet, but a major improvement since your procedure and it seems that things will improve once you can sort out your vitamin imbalances.
I wish you the best with that and am really excited about my turn on 7,8 of this month!
Love Suzanne

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Post by ErikaSlovakia » Fri Apr 02, 2010 3:46 am

crocky wrote:Ericka - it is so good to hear how well you are doing - ok, not perfect yet, but a major improvement since your procedure and it seems that things will improve once you can sort out your vitamin imbalances.
I wish you the best with that and am really excited about my turn on 7,8 of this month!
Love Suzanne
Hi Suzanne!
My biggest complication is the side effects from Carbamazepin and Gabapentin. I feel really dizzy and drunk and sleepy - like right now.
I have tried many times not to take the pills but the pain is so CRUEL!
Well, maybe later :wink:
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

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Post by sunlounger » Fri Apr 02, 2010 3:48 am

Hi Erika,

Thanks for the update
it's good to hear how your doing :D
You might find that you’re not lost

ErikaSlovakia
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6 months after my procedure

Post by ErikaSlovakia » Mon May 03, 2010 5:08 am

6 months after my procedure in Poland.

I have some more improvements.
1. I take less pills for my neuropathic pain in my right arm since the 5th month.
2. I take my sleeping pills only in case of bigger stress.
These two improvements mean that I do not feel that "drunk" and dizzy in the morning. I still feel it but it is not that strong anymore.
3. I am able to drive a bike - not for long but, I can. It is a good exercise for my muscles and for my balance as well.
- I do not feel worse than before the procedure.
- I for sure did not have any attack.
- I do not have any complications because of my stent – it is in the place where I had my pathological valves.
- My vision is as bad as before the procedure.
- I am extremely sensitive to weather. I am weaker, have headache.
- it is still a problem for me to wake up
- I still have some brain fog
- my fatigue is better again - I had a set back in January and February for sure - flu might be a reason and too much work on the internet :)
- I still have to have some rest during the day - but not sleeping.

I would go for the procedure again, so I am not sorry and it for sure was not useless.

Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

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6 month update

Post by Dovechick » Mon May 03, 2010 6:25 am

Thank you Erika for updating us at this time. I.m pleased that you are still noticing improvements after this time. This is very encouraging for the rest of us who have either had the procedure or our loved ones have. It's great to hear that people have immediate improvements, but it does not happen to everyone in that way. For some like Ella it is going to be a slow process and the fact that you still notice that you are getting better 6 months after the procedure is good news.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

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Re: 6 months after my procedure

Post by BELOU » Mon May 03, 2010 9:56 am

[quote="ErikaSlovakia] I am extremely sensitive to weather. I am weaker, have headache.
Erika[/quote]

Your headaches are related to your treatment or you had them prior to having your liberation procedure?

Marc
RR:2004 EDSS: 0 COPAXONE since 2009

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Re: 6 months after my procedure

Post by ErikaSlovakia » Mon May 03, 2010 10:05 am

BELOU wrote:[quote="ErikaSlovakia] I am extremely sensitive to weather. I am weaker, have headache.
Erika
Your headaches are related to your treatment or you had them prior to having your liberation procedure?

Marc[/quote][/quote]

My almost everyday headache started about 20 years ago and it was often very strong.
I have mentioned in some report before that these headaches stopped 4 months after the treatment. The "aftertreatment" headache stopped about 8 days after the treatment.
So I am 2 months without headache.
However, when there is weather change I get headache for 6-8 hours. Then it is gone until the next weather change. I also get weaker and dizzy. I especially do not like low air pressure.

Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

ErikaSlovakia
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Post by ErikaSlovakia » Wed Jun 02, 2010 12:02 am

7 months after my procedure in Poland.

1. I take less pills for my neuropathic pain in my right arm since the 5th month - this statement is still valid
2. I take my sleeping pills only in case of bigger stress - this statement is still valid
3. I am able to drive a bike - not for long but, I can. It is a good exercise for my muscles and for my balance as well.
- I do not feel worse than before the procedure.
- I for sure have not had any attack.
- I do not have any complications because of my stent – it is in the place where I had my pathological valves.
- My vision is as bad as before the procedure.
- I am extremely sensitive to weather. I am weaker, have headache and feel dizzy - for example now. I am often dizzy.
- it is still a problem for me to wake up
- I still have some brain fog
- my fatigue is better again - I had a set back in January and February for sure - flu might be a reason and too much work on the internet Smile
- I still have to have some rest during the day - but not sleeping.
- I was able to swim 25 meters couple of days ago - as my body became warm because of the activity, my left eye became worse - this is still the same
- ma walking is quite good, I think my legs are getting stronger because I do not feel any muscle pain after riding my bike as it was the first time.

My Vitamin D levels were 7,09 (5 weeks ago). After 1 month of taking 7500 IU per day my levels are 36. Now I take 5000 IU per day. I do not have to pay for the tests in my country and my GP was willing to do it and she prescribes me Vitamin D drops. I also had twice B12 injections. As I started to be more hungry and ate more I think I will stop. I would like to keep my weight now.
I still take LDN. OK, I am not healthy and I have my limits but my biggest profit is I have not had any relaps, I do not have any new symptoms and I do not feel worse than before the procedure. My nephew was happy I could go to ride a bike with him, I was even in the swimming pool with him after couple of years. I did not even have fatigue that day and I did it in one day - bike plus swimming.
And one more thing: about 500 MS patients had the procedure after me - I was only #2 - nice :) .
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

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Post by Mutley » Wed Jun 02, 2010 12:59 am

That's great news Erika. No more relapses, or not feeling any new symptoms is such a big thing!

I hope you are keeping well. On behalf of the 500 who followed you, thanks for helping pave the way! :D

Best wishes
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

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Post by AnnaP » Wed Jun 02, 2010 3:53 am

Hi Erika

Happy to hear that you're doing well :D keep up the progress! :D :D :D

hugs and kisses

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progress report

Post by Dovechick » Wed Jun 02, 2010 7:24 am

NICE NICE NICE
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

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Post by hopeful2 » Wed Jun 02, 2010 8:33 am

Erika:
Thanks for the update---it's good to hear how well you're doing. You're very brave to have been #2 to get the procedure! I hope you continue to improve. :)
Patrice

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