One Month Update after seeing Dr Kostecki

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

One Month Update after seeing Dr Kostecki

Postby alanbrowne » Wed Jun 16, 2010 1:35 am

Hi All,

Just thought I would give a little update 1 month after having the procedure in Poland with Dr Kostecki.
He found that my right jugular was completely blocked and my left was partially blocked.
I have a 60mm stent in my right vein, and had ballooning to my left.

My GP is happy to prescribe Plavix for a year which is good, luckily I only have to pay for the prescription, bless the good old NHS !!

It’s been a strange month really, ups and downs, but mostly ups.
I know it sounds a bit over dramatic, but our lives have been changed since Poland, my biggest dream after the procedure was that it would help my fatigue, which was getting really bad and with 3 young boys was literally heart breaking not to be able to play with them properly.
I feel like a different person, the person that I was before MS, it is quite scary the amount I can do now, I just have so much more energy, my head is so much clearer, my wife keeps telling me to sit down and relax, but I can’t :D

Our 6 year old had a birthday party at our house on Monday afternoon, so we decided to host a football party for nine 6 year olds in our back garden with me as the coach, it was fab…but very hard work !!! He told me after that it was the best party he had been to….now that brought a tear to my eye.
This is something that I would not have dreamed of trying to do before Poland.

My walking comes and goes, there are moments where I can actually walk normally, no foot drop, no leg dragging at all. But this isn’t always and we’ll just have to wait and see about that.

I do still have MS, I still feel like I have it, my hands are still numb, my right arm still aches if I do too much, but life is good now, and I do feel so lucky that it has had the effect that I had hoped for.

In the first few days I had some paranoia about my stent, is it moving, has my vein ruptured etc etc, but now I don’t even think about it, it horrifies some people when I tell them about it, but I’m happy it is there and I know now it is safely attached to my vein and tissue and it’s not going to move anywhere.

Anyway, I am without doubt one of the lucky ones, I just hope that it continues.

Take care all, and good luck to anyone having the procedure.
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Postby Perky » Wed Jun 16, 2010 2:03 am

What an lovely, uplifting post this is! Thankyou for sharing that with us.

I hope your improvements continue, and that more of us can experience the same in good time...
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Postby costumenastional » Wed Jun 16, 2010 2:08 am

Alan, good to hear man!!! Hope it will only get better for you from now on.
Take good care, listen to your body and when needed, take it slow.
We are all together in this one.
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Postby smokey » Wed Jun 16, 2010 2:24 am

Wonderful news Alan. The positive effect on fatigue is just amazing.
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Postby Asher » Wed Jun 16, 2010 3:32 am

Alan, your account is so uplifting! I have a 5 year old son and your story brought a tear to my eye too! Thank you and praying for your recovery to continue.
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Postby kc » Wed Jun 16, 2010 7:03 am

Alan, Love love love the part about your 6 yr olds birthday. I can relate. My kid is now 10 and I am hoping to finally be the mother I knew was in there but couldn't come out because of ms. Oh hopefully soon.

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Postby Justliberated » Wed Jun 16, 2010 11:27 am

Congratulations Alan

After reading your entry, I just wanted to say I feel exactly the same (spookily so). I went to Bulgaria 2 wks ago. My wife has been following your progress.

My fatigue is much better and I can now keep up with my 4 year old and 1 year old daughters. Myself and my 4 year old play hide and seek every day now. We never miss an opportunity. That was unheard of before liberation.

I agree with you - I still have MS. Good days and bad days but as you say, mainly good.

When you have a family, it makes all the difference.
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Postby JoyIsMyStrength » Wed Jun 16, 2010 1:06 pm

Beautiful post, Alan, thanks for sharing how you're doing and keep us posted. Congratulations!

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Postby magoo » Wed Jun 16, 2010 1:26 pm

This is so wonderful and I am so happy for you and your family!!
I can realte to the feelings you are having right now, I've been there. Being able to participate in my children's lives fully again has by far been the best part of this for me.
I also did too much in the beginning with all of that new energy. Be kind to your body...slow and steady!! Ups and downs are par for the course early, don't be alarmed.
PS: I have stents too.
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby garyak » Wed Jun 16, 2010 2:51 pm

After liberation I hope to teach my almost 5yr old grandson how to toss a frisbee or how to swing the golf clubs I bought him. My inability to physically interact with him currently crushes my heart :(
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