Erika`s procedure in Poland

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Jun 13, 2010 6:26 am

Hi there!
2 things:
1. The weather is hot. I have very strong headache, I have feelings like my brain is swallen, my vision is worse of course so I still prefer to sit in my cold room or in our basement. These are not new symptoms. I have had these problems for more than 5 years.

2. I take only 300 mg of Carbamazepin. I have been taking 1200 mg for more than 3 years because of my nerve pain in my righr arm. It started to be better 5 months after the treatment, I was on 900 mg, later on 600 mg a day and now only 300 mg.

Erika

Zeureka · Post by **Zeureka** » Sun Jun 13, 2010 7:00 am

Erika, very sorry to hear that, it's ups and downs. Very hot here as well. Most strangely our sinus/cosinus curves (hu, I'm doing too much maths with my daughter...although no sinus/cosinus yet) are on opposite sides of curve for the moment as despite this sweaty weather my headaches nearly gone. I hope it will get less hot also in Slovakia and that you will soon improve again!

I wish you to get better soon, and lets hope in an exponential curve for the future for all of us

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Jun 13, 2010 7:41 am

Zeureka wrote:Erika, very sorry to hear that, it's ups and downs. Very hot here as well. Most strangely our sinus/cosinus curves (hu, I'm doing too much maths with my daughter...although no sinus/cosinus yet) are on opposite sides of curve for the moment as despite this sweaty weather my headaches nearly gone. I hope it will get less hot also in Slovakia and that you will soon improve again!

I wish you to get better soon, and lets hope in an exponential curve for the future for all of us

I have been having strong headaches for about 15 years. I might have it until the end of my life, who knows...

Sinus/cosinus makes my headache even worse

I just wanted to inform all people. We must learn

Erika

ErikaSlovakia · Post by **ErikaSlovakia** » Mon Jun 28, 2010 11:37 am

In case you want to see my jugulars with a stent click here:http://sofista.sk/documents/Erika%20Mik ... nt%201.png

This CT was done in Slovakia (320 "layers").
Erika

cah · Post by **cah** » Mon Jun 28, 2010 12:43 pm

You really gotta look at this! It's such an anstonishing picture!

PCakes · Post by **PCakes** » Mon Jun 28, 2010 12:56 pm

omg!!.. i have never seen an image like this one?? explanation please...i know it's not but ..it looks like the stent is on the outside of the vein... ! this image is a WOW!

mangio · Post by **mangio** » Mon Jun 28, 2010 1:14 pm

too cool

HappyPoet · Post by **HappyPoet** » Mon Jun 28, 2010 1:37 pm

Ohmygosh!
The image scared me so much that I yelled out the moment I saw it!!
Please tell us about the image, Erika.

Zeureka · Post by **Zeureka** » Mon Jun 28, 2010 1:54 pm

Impressive. Erika, is your left jugular also generally narrower than your right? Because that's the case for me and on your pic seems like it.

And where did you have the pathologic valves in the left jugular - also at the junction with the brachiocephalic vein? Then idem for me, but they did not place any stent in my case (it's not that I would have refused...when asked they said not necessary or was it not possible for some reason?...whatever) I look forward to continue improving, feel much more awake/less fatigue/no instability last+this week also while working, 1 month over now

Drury · Post by **Drury** » Mon Jun 28, 2010 7:48 pm

Thank you Erika,

Yours was one of the first blogs that I read and followed with fascination before I joined and I have such respect for you.

I wish you continued improvements and thank you for paving the way for all MSrs and for keeping us updated.

All the best,
Drury

ErikaSlovakia · Post by **ErikaSlovakia** » Sat Jul 03, 2010 8:47 am

8 months after my procedure.
- I do not feel any problems regarding my stent
- I have not had any relaps
- I do not have any new MS symptoms
- nothing is worse
- I still have problems with heat
- I think I have the same problems with my vision as before the treatment
- I still have headache but not that often and not that strong
- still use one cane
- I took only 150 mg of Carbamazepin last night at 10 pm - it is almost 7 pm and so far no pain (I used to take 1200 mg a day)
- I still take LDN
- I must take more vitamin D because it is still not high enough
- I still have my limits, I need break often, I still feel my MS
- when I do not overdo it I do not feel the MS fatigue
My secret plan is to be able to work at least 4 hours a day. I am still not that far

Erika

trapatron · Post by **trapatron** » Sun Jul 04, 2010 12:56 am

Do you compare yourself on the EDSS scale pre-op and post-op?
What I can see so far is that it seems to be less benefits as longer up on the EDSS-scale one is. At least in the short terme it seems to be so.
Lets hope that in the longterme the brain can recover it self and let fuctions restore.

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Jul 04, 2010 1:05 am

trapatron wrote:Do you compare yourself on the EDSS scale pre-op and post-op?
What I can see so far is that it seems to be less benefits as longer up on the EDSS-scale one is. At least in the short terme it seems to be so.
Lets hope that in the longterme the brain can recover it self and let fuctions restore.

EDSS - I would say it is 5,0. It was 5,5 before. I think so, because I really can walk faster just not too long and I still need a cane.
EDSS does not say many other things so it is hard to say.
When I have really good day, with no stress, no heat, not doing much, I would even say it is 4,5.
On the other hand after spending 5 hours on a bus in heat without AC, with strong headache and other problems it is 5,5 again.
EDSS is some help but I do not think it is very good test for us with MS.
Erika

trapatron · Post by **trapatron** » Mon Jul 05, 2010 9:17 am

Thanks Erika.
Asking that because I simply think that just walking is hard to get fast improvment from this treatment. And the reason for that is just simple that this treatment dont resolve allredy damages in brain and spinal.
The hope is if the brain withe restored bloodflow in longterme can repair it selfe. Lets hope so.

Zeureka · Post by **Zeureka** » Mon Jul 05, 2010 11:37 am

trapatron wrote:Thanks Erika.
Asking that because I simply think that just walking is hard to get fast improvment from this treatment. And the reason for that is just simple that this treatment dont resolve allredy damages in brain and spinal.
The hope is if the brain withe restored bloodflow in longterme can repair it selfe. Lets hope so.

Yes, and Erika sorry you feel a bit down - these are these ups and downs - keep up! Not only hope to repair with more time but most likely prevention of further damage!
For me the same, my hand/feet symptoms do not seem to have improved much and it's worse with heat, as always. However for me CCSVI until now had major impact on reducing fatigue/instability/cloudy brain spells and restoring a normal bladder function. That's already something, to feel more alert and energetic - and hope indeed for the future: prevention.