This Is MS Multiple Sclerosis Knowledge & Support Community

Erika--
I'm so sorry to read about your reversal. You have been the bravest and most energetic advocate, travelng to Poland, bringing news of CCSVI to your home country. It breaks my heart to know your gains have not remained.

Jeff has been treated multiple times at Stanford....he's been so fortunate that his venous malformation is recognized by insurance companies in the US, and he can get follow-up care. This has not turned out to be the one-time, easy treatment we had hoped in the beginning, and for that, I am so sorry.

I send you prayers for energy and comfort across the miles...with wishes for follow-up and hope. And, although I think you have a beautiful smile, I will not say so...because I know it covers much sadness--
thoughts to you,
cheer

cheerleader wrote:Erika--
I'm so sorry to read about your reversal. You have been the bravest and most energetic advocate, travelng to Poland, bringing news of CCSVI to your home country. It breaks my heart to know your gains have not remained.

Jeff has been treated multiple times at Stanford....he's been so fortunate that his venous malformation is recognized by insurance companies in the US, and he can get follow-up care. This has not turned out to be the one-time, easy treatment we had hoped in the beginning, and for that, I am so sorry.

I send you prayers for energy and comfort across the miles...with wishes for follow-up and hope. And, although I think you have a beautiful smile, I will not say so...because I know it covers much sadness--
thoughts to you,
cheer

I got used to declining. I felt better only the first 33 days. I had control venography in Poland in January. It was negative so I cannot do anything right now. There is also a hospital in my country doing the procedures. They started in April 2010. I think science does not know enough yet. As I say - Rome was not build in one day so I have been aware of long and difficult way for many of us. Doctors will know more in 5 years. So if I count from my procedure it is only 3 and a half
I also know it will be late for many of us but I still strongly hope it will be easier for the next generation.
I would do it again, I would do it again... because I am sure it was correct even if I am not here anymore. To be honest I would rather be somewhere else than in this world.
Erika

Hi Erika,
I am so sorry to learn that you are declining and feeling awful.
You are not alone x

erika, you speak for many of us here and reading between the lines there is a piece of me and others. but, no mater the circumstances it boils down to when it's my pain i own it as well as when it is your pain you own it. and, it's hard and cruel. i hate it for you i hate it for me and everyone else suffering.

all we can do is wait and hope---but it sure is hard to do sometimes.

Erika,

My heart breaks for you and your pain.

Like others on this site, I am in awe of your courage and bravery.

You're in my prayers. God bless.

May

My thoughts and prayers are with you, Erika....and with anyone effected by this horrible disease.

ErikaSlovakia wrote:

cheerleader wrote:Erika--
I'm so sorry to read about your reversal. You have been the bravest and most energetic advocate, travelng to Poland, bringing news of CCSVI to your home country. It breaks my heart to know your gains have not remained.

Jeff has been treated multiple times at Stanford....he's been so fortunate that his venous malformation is recognized by insurance companies in the US, and he can get follow-up care. This has not turned out to be the one-time, easy treatment we had hoped in the beginning, and for that, I am so sorry.

I send you prayers for energy and comfort across the miles...with wishes for follow-up and hope. And, although I think you have a beautiful smile, I will not say so...because I know it covers much sadness--
thoughts to you,
cheer

I got used to declining. I felt better only the first 33 days. I had control venography in Poland in January. It was negative so I cannot do anything right now. There is also a hospital in my country doing the procedures. They started in April 2010. I think science does not know enough yet. As I say - Rome was not build in one day so I have been aware of long and difficult way for many of us. Doctors will know more in 5 years. So if I count from my procedure it is only 3 and a half
I also know it will be late for many of us but I still strongly hope it will be easier for the next generation.
I would do it again, I would do it again... because I am sure it was correct even if I am not here anymore. To be honest I would rather be somewhere else than in this world.
Erika

ericka
the CT venogram you sent me showed some intimal hyperplasia. are you sure that the hyperplasia did not get worse?

drsclafani wrote: ericka
the CT venogram you sent me showed some intimal hyperplasia. are you sure that the hyperplasia did not get worse?

Oh, really? Nobody told me so far. I have no idea what is going on.
I felt better - more energy the first 33 days. After my BP went to 90/60 for 4 days. I do not know why. Of course I started to feel worse. I had cough, muscle pain and herpes on my lips. I had my first follow up 77 days after my procedure in Poland. Prof. Simka told me my flow in my stented jugular was very flow. We could not do anything at that time. I never felt better from that time again. I had the CT scan done in Slovakia in June I think. Doctors - IRs told me it was OK. I sent it to prof. Simka as well. I had another Doppler follow up in September. The flow was still very slow. I had relapse in December 2010. I had control venography in Poland in January 2011. It was negative. I continue taking LDN. I started to take 100 mg Doxycycline per day. I plan to take it for 4 months.
I still can walk, well and I just fell down from my chair - my ribs hurt but it is not broken for sure. It is my everyday life. I am very weak and tired. I must simply wait for more knowledge of the science I think.
And one more thing - when I had my first and second MRV in Poland in October 2009 prof. Simka saw something strange with my veins in my brain but maybe it is not a problem at all. I do not know.
I will maybe never get better. Who knows. Time will tell us.
Erika

Erica,

We began falling in love with you on July 31, 2009 when you opened your heart and took us along with you on your CCSVI journey: CCSVI and Slovakia, Europe

You helped more people than you can ever imagine by sharing your hope, wit, charm, warmth, courage, sweetness, honesty, compassion, intellect, classiness, perseverance, enthusiasm, and self-determination. Even when you aren't feeling well, these qualities still come shining through your posts.

You're in my thoughts and prayers, and I hope you will feel better soon.

I have problems with my vision. I have "only" had strong pain behind my right eye the first 3 days. Another 3 days passed but I even see worse with my right eye.
This is not the first time in my MS career so I have covered the right eye not to move it too much and not to see much light.
I am sad because it was my better eye. Well, it still may be as good or as bad as before.
I wear sunglasses inside as well.
My arms are very weak and I do not like it - they even hurt.
That's life
Erika

Hi.

I had one of my early attacks on Sept. 11 (stress, anyone?). My double vision went to single eye. I had to cover one eye to drive (I could drive back then). I had my first course of steroids, and I believed they had saved my vision. I found out different later on. Now I think the procedure has given my eye muscles back some strength. I hope it lasts, but if I go the way you have, well, at least I had that time of improvement. It seems an awful disappointment for you. I hope there is some way forward. My friend has no further options because no doctors will go near her. She has clots in both stents, that by now are permanent. Another guy I know went to India and they would not even treat him. He is worse than ever. His feet are terribly swollen. Both of them have young kids. I think those that are well and those that are only mildly affected by CCSVI, and those that have been successfully treated, need to be reminded periodically that some are still suffering, and even dying. It is not always a pretty picture.

You called yourself a lucky girl and we still think you were. We have followed on your path and will always be grateful to you, even if we restenose or thrombose. If there is ever any justice in the world, you will be lucky again.

My friend has no further options because no doctors will go near her. She has clots in both stents, that by now are permanent.

Dr. Zamboni has explored the possibility of venous grafting, I think there will be hope for this to be an option for people.

I think those that are well and those that are only mildly affected by CCSVI, and those that have been successfully treated, need to be reminded periodically that some are still suffering, and even dying.

It is horrible, isn't it.

I too hope that, Erika, with you still being young and CCSVI continuing to advance, there will be hope for improvement in your future. Dr. Sclafani mentions intimal hyperplasia, maybe that can be looked at and treated. Do you have any images from your recent control venography? I know it is difficult but maybe there is something that was missed.

1eye wrote: It seems an awful disappointment for you.

Oh, no, no. It is not a disappointment for me at all. I am still lucky, I could inform couple of people. I am satisfied. There is really no reason to be disappointed for me.
As I say: "Rome was not built in one day!" We, people of this world go simply step by step.
It takes longer time to learn a foreign language for example. It also takes longer time until baby speaks and walks.
We dye one day anyway, so why to stress myself.
Just do not worry and take it easy
Well, no more energy and very little vision, so bye for now
Erika

Well, Erika,it has been over a year since I first heard of your luck. Rome was not a day or even a year, but I often take comfort in what Pete Seeger taught me about guitar playing. When I was 13 I had to relearn how to walk. I had already done it once, so the second time didn't take so long. While off my feet I learned how to play guitar. Pete Seeger said: "It's like walking. Takes about a year to learn, and after that it comes natural." I expect this time I'll be a bit longer than six months at it, even though I walked and played guitar for 40 years since then, it'll take a while. But I'll get back to it. I'll sing you a song someday, OK?

You got plenty vision for me.

1eye wrote:I'll sing you a song someday, OK?

You got plenty vision for me.

Yes, yes, please, a song - I like good music and I can still hear well.
Erika