Home From Poland

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

Home From Poland

Postby openmind » Tue Mar 23, 2010 7:36 am

Hi everyone, just wanted to share my experience in Poland last week and how I am feeling right now.
Firstly, it was a blessing to be there with such lovely people as Fraser and her husband, who I am sure we will remain good friends for life as we shared a momentous time together.
The days before the procedure we talked about our fears and anxieties which was good to share and the testing procedures we all shared together as you are taken around in a group.
The long day of the procedure, was also good to be connected to others going through the same thing.
One lady in the group went in at 1:00pm but then we had to wait until 6:30pm for the next procedure which was me!
I felt like I was in a dream and it was a strange experience to take the plunge when you are feeling apprehensive, but I learned a lot about myself in that I can be brave and go forward when i know that the benefit outweighs the risks. i was actually shocked to find out that I too had narrowed veins on both sides. I had just the angioplasty balooning done.
After i came out i had warm hands and feet and they were not stiff anymore.
The next day my bladder was playing up because of the catheter and i didnt have a lot of control over it. In the evening we went to meet everyone in the bar and I too experienced the fact that the noise and bustle wasnt getting to me like it would normally. I sat in there for a couple of hours chatting away which was a great experience.

I found that i could get my leg over the bath side to get into the shower and this got better the following day in that i got in and out by myself, but my legs were still not stable and my bladder was getting worse. I also experienced a large haematoma around the groin area that kept getting bigger by the day. The staff were very helpful and took me back to the clinic on the sunday night to get it checked out, to make sure the vein had closed up and was not leaking blood, which it turned out to be ok. The reason for the bruise spreading was because of the blood thinners so that put my mind at rest. As i was back on a plane the next day.

Monday we flew home and the bladder infection kicked in more, so the trip back to the airport was rather embarrassing but Maciec was very kind and patiently waited as i had to change clothes :cry: he carried our suitcases to the check in desk which also helped Nigel as I was in a wheelchair and falling apart by now!!!

So here we are at Tuesday and I am just going to take some antibiotics. I tried to do it the natural way but things arent improving at all. I hope to report in a few days that things have improved dramatically for me but right now I am not so lucky in this aspect. You desperately want to come home with great news as all your friends and family are waiting eagerly for news of improvement.

my emotions are all over the place as one minute i am just telling myself that its the infection that has knocked me back but in the back of my mind I am questioning whether my vein has closed up again. my feet are cold again. Has anyone had this experience? or do your feet stay warm the whole time? ANy shared info on this would be much appreciated.

Good Luck to everyone! Jox
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Postby gibbledygook » Tue Mar 23, 2010 8:08 am

Jo, I had a few months bladder infection after stents were placed bilaterally. All my MS symptoms came back with a vengeance but as soon as the antibiotics started to work they vanished back to the post-operative improvement. I really hope that your veins haven't closed back up again. You'll only know once you've beaten the bladder infection.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby annad » Tue Mar 23, 2010 8:13 am

openmind,
thanks for sharing and I wish you continued 'good' recovery! As I type on my laptop, I am covered with a blanket, my feet, hands and nose are frozen! It would be nice to feel warm again.
Welcome home!
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Postby Villagemaid » Tue Mar 23, 2010 9:06 am

Yes...the frozen feet feeling gets old, doesn't it???? :roll:
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby ComfortablyNumb » Wed Mar 24, 2010 5:38 am

Jox,

Thanks for sharing your experience with us. :D

I am hoping the bladder infection is the only reason for the setback in your condition and I hope this find things much improved. Please keep us informed of your progress.

All the best
Stephen
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Postby openmind » Thu Mar 25, 2010 12:11 pm

thanks for your replies and useful information. It feels like I am still in limbo, wondering if it has worked or if it has closed up again, its so weird and a real battle to remain with a positive mind when your body starts to let you down.

After the bad day on Tuesday the antibiotics kicked in and things improved pretty quickly. The tuesday evening I took a few steps and actually bent my knee which hasnt happened for a while, i was also able to squat down slightly and get back up again which is pretty amazing considering 24 hours before I couldn't hold my own weight on my legs. Your body really does want to get better, it just needs the right environment to do it which gives me hope that i am clinging onto.

I can only take it one day at a time and try to live in the moment rather than worry about the future what ifs.

best wishes
Jo xx
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Postby tipsyturtle » Thu Mar 25, 2010 12:33 pm

openmind,
Thanks for sharing your experience. Sounds like things are moving in the right direction.
Sending healing...

:D
Katowice, April 7/8
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Postby magoo » Thu Mar 25, 2010 2:00 pm

Take it easy and let the healing begin. I was really good at overdoing it right after my procedure because I felt better. It took some time for my body to adjust to the new bloodflow. I am sure you will do great! The anxiety of the vein collapsing again must be hard, but try to enjoy each day and be patient with your body.
Rhonda~
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 openmind » Fri Mar 26, 2010 3:35 am

Hey I just wanted to share this with you all. I woke up this morning and my feet were all sweaty !! 8O I have not experienced sweat for years :roll: my hands were clammy too :P yippee :wink: sorry cannot hide my enthusiasm Jo x
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Postby openmind » Fri Mar 26, 2010 3:37 am

thanks so much Rhonda and yes I will be nurturing myself back to health, lots of meditating and deep breathing and visualising perfect health for me. I want to start some yoga too when i get a bit more mobile. Jo xx
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Postby hope410 » Fri Mar 26, 2010 4:18 am

My very best to you in your continued healing and recovery!

So tell me... how scared were you beforehand? I don't want to let my fears sway me, but I have to admit that I'm pretty scared about the prospect of a wire going up my leg and through my heart. Were you really nervous too?
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Postby Lelo » Fri Mar 26, 2010 5:23 am

:?:
Last edited by Lelo on Fri Mar 26, 2010 8:20 am, edited 1 time in total.
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Postby Lelo » Fri Mar 26, 2010 5:29 am

Hi Openmind, I had the same feeling of getting my symptoms back after coming home. It was a stressful experience to come home. A big familyevent the first day (not for me :( ). And two kids, who had the flu. So for almost a week my symptoms were back. But when the flu catched me after four days, it disappered immidiatly, to my surprise :o . Five days ago, everything changed and I started to feel strenght. One day I went to the mailbox and I realised I`m back on track. Today 16 days after surgery
( stent Left JV and valveproblem azygos ). I feel stronger than for years and my mind is clearer and I can deal with impressions and almost feel some creativity :D .
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Postby ComfortablyNumb » Fri Mar 26, 2010 6:00 am

Openmind & Lelo,

Fantastic that both of you are finally starting to feel the benefits now.
It must have been devestating thinking that it might have gone wrong after waiting and hoping so long.
Glad you are both on track now and I wish you all the best.

Keep on healing.
Stephen
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Postby Vhoenecke » Fri Mar 26, 2010 6:07 am

When people, that don't have MS, get home from long journeys they have those types of symptoms. We are so thankful that you share your ups and downs upon the return home. Those of us going into the procedure will know what to expect. Thank you so much!

Val
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