Page 68 of 68

Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Posted: Sun Apr 14, 2019 3:13 pm
by ElliotB
"time for an ultrasound to verify problem areas"

That makes sense, and then you can make a decision based on the results.

Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Posted: Fri Apr 19, 2019 10:39 am
by vesta
lazydean wrote:
Sun Apr 14, 2019 2:17 pm
Yes, the procedure that I had in November 2010 in Albany, NY was quite good. Dr. Siskin ballooned my left jugular. It was 40% blocked & the right jugular was about 25% blocked...I knew immediately that I felt different. My right eye had a vision issue A black area (not black in color...) It slowly went away. My hands & feet were warm again. Biting my tongue/coughing spells were reduced to about 1 episode every other day. Vertigo was reduced to about every 2 or 3 weeks. Now biting my tongue/coughing spells have increased in frequency.....Vertigo occurs about once a week. Mechlazine tampers it down. My hands a usually cold. So I thought 9 years since my last treatment it is time for an ultrasound to verify problem areas. I read Denise Manley had 5 procedures.
In answering my question as to why she underwent venoplasty for CCSVI, a correspondent on my site, wrote the following

" I read that ccsvi treatment venoplasty could help chronic Lyme. And I knew I had the further vein challenge of my genetic hypercoagulation, causing vein inflammation..."

She felt very much better after treatment and was told to repeat it in 2 years which would have been 2016, but has been unable to do so. I've come to think various infections (Lyme, EBV maybe, Chlamydia P. maybe, Mono maybe) clog up the veins which is the cause of venous obstructions leading to damage to the CNS. That is to say the infectious factor is secondary to what they do to obstruct normal CNS fluid circulation and getting rid of the infection might help but then the veins need to be cleaned out.

Best regards, Vesta

Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Posted: Fri Apr 19, 2019 3:49 pm
by lazydean
Thanx, DEAN

Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Posted: Tue Oct 15, 2019 12:10 pm
by IronTinaMS
Hello all,

I wasn't sure where exactly to post this, maybe another spot is better so please let me know if I should post elsewhere too.

I had an initially venoplasty in the US at Dayton Interventional Radiology where I experienced unbelievable results.

I wanted to take a minute to talk about my experience at the CCSVI Clinic in Poznań, Poland. https://ccsvi-clinic.com/en

The team is fantastic; aides, nurses, hospitalists, vascular/neuroradiologist, neurosurgeon, anesthesiologist.

The facility where I stayed is fantastic.

They are doing research. They have an approved study.

I sent imagining (ultra sounds and MRVs) ahead of time for review which helped the decision to proceed with a trip there. Side note: Great place for a good CCSVI assessment is in Phx, AZ at http://azdoppler.com/

Back to my Poland trip:

I arrived Monday, 9.Sept.2019 (was picked up from the airport) had an MRV.

Tuesday 10.Sept.19 I underwent more testing (blood, EKG, CXR) to make sure I was fit enough for procedure. I had physio as well as nutritional assessment.

Tuesday I got to meet with Dr. Dabroski (specialist in neurosugery), anesthesiologist, Dr. Sclafani and Dr. Wielochowski. I was able to sit and talk with Dr. Sclafani and Dr. Wielochowski for a long time. They were wonderful and spent a lot of time with me. I also met with Czarek, the founder of the clinic.

11.Sept.19 I underwent repeat ballooning of my left IJ and azygos veins. Unfortunately, my right IJ is 100% blocked (scar tissue from my initial procedure) and they weren't able to get into it at all.

Maybe most notably is they found that my left renal vein was 78% collapsed (Nutcracker Syndrome). I'm convinced this would never have been found had I not gone there. Anecdotally, Dr. Sclafani was interested to look because he's seen women with Tspine lesion having left renal vein compression.

I cannot say enough about my experience in Poland. For a very extensive review and treatment of the vascular system (as well as other aspects-nutrition, etc) it is the most ideal place.

There are very limited options for this treatment. For US/Canadian residents, Mexico looks to have an established programme but I don't think any site I've researched is looking so completely at the vascular system as well as some of the other components (nutrition, EBV, HSV, Lyme..).

Please reach out to me with any questions! I'd love to answer/discuss!

Christina (IronTinaMS)

Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Posted: Wed Oct 16, 2019 6:41 am
by vesta
IronTinaMS wrote:
Tue Oct 15, 2019 12:10 pm
Hello all,

I wasn't sure where exactly to post this, maybe another spot is better so please let me know if I should post elsewhere too.

I had an initially venoplasty in the US at Dayton Interventional Radiology where I experienced unbelievable results.

I wanted to take a minute to talk about my experience at the CCSVI Clinic in Poznań, Poland. https://ccsvi-clinic.com/en

The team is fantastic; aides, nurses, hospitalists, vascular/neuroradiologist, neurosurgeon, anesthesiologist.

The facility where I stayed is fantastic.

They are doing research. They have an approved study.

I sent imagining (ultra sounds and MRVs) ahead of time for review which helped the decision to proceed with a trip there. Side note: Great place for a good CCSVI assessment is in Phx, AZ at http://azdoppler.com/

Back to my Poland trip:

I arrived Monday, 9.Sept.2019 (was picked up from the airport) had an MRV.

Tuesday 10.Sept.19 I underwent more testing (blood, EKG, CXR) to make sure I was fit enough for procedure. I had physio as well as nutritional assessment.

Tuesday I got to meet with Dr. Dabroski (specialist in neurosugery), anesthesiologist, Dr. Sclafani and Dr. Wielochowski. I was able to sit and talk with Dr. Sclafani and Dr. Wielochowski for a long time. They were wonderful and spent a lot of time with me. I also met with Czarek, the founder of the clinic.

11.Sept.19 I underwent repeat ballooning of my left IJ and azygos veins. Unfortunately, my right IJ is 100% blocked (scar tissue from my initial procedure) and they weren't able to get into it at all.

Maybe most notably is they found that my left renal vein was 78% collapsed (Nutcracker Syndrome). I'm convinced this would never have been found had I not gone there. Anecdotally, Dr. Sclafani was interested to look because he's seen women with Tspine lesion having left renal vein compression.

I cannot say enough about my experience in Poland. For a very extensive review and treatment of the vascular system (as well as other aspects-nutrition, etc) it is the most ideal place.

There are very limited options for this treatment. For US/Canadian residents, Mexico looks to have an established programme but I don't think any site I've researched is looking so completely at the vascular system as well as some of the other components (nutrition, EBV, HSV, Lyme..).

Please reach out to me with any questions! I'd love to answer/discuss!

Christina (IronTinaMS)
Thanks for the very informative post!

Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Posted: Mon Jul 20, 2020 7:57 am
by kevin4apenny
Hi Sharon and all

It years since I posted but I have worked with Prof. Schelling since co organising the '
2011 UK CCSVI conference. '
the lack of NHS attention has sadly continued to be not only disappointing but actually has arguably exacerbated my symptoms ! If nothing else, I have been left to deteriorate with STROKE symptoms compounding the situation.
I even contacted RN Sally Pacholok who made a great video ," Diagnosing and Treating B12 Defficiency an epidemic of misdiagnosis "
see tis link


Sadly, Sally has not been able to join me in my thankless challenge to establish a connection with MS s the presentation is so strong: neuropathology, Subacute combined degeneration (causing PARAESTHESIA , tingling and acute pain).
Several friends we have all lost may have been spared a life of suffering.
Now I am in at end of tether as my attempts to gain legal qualifications to work against the Equality Act 2010 got screwed by internal mistreatment by Glasgow uni and further problems with case notes being LOST.

If anyone reads this and may be able to comment and /or help I would be very grateful.

Kevin Campbell

Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Posted: Fri Aug 07, 2020 5:34 pm
by violin
Thank you so much for posting this video. I will discuss with my doctor about whether I should be taking B12. It's so cheap, it's worth trying regardless of blood testing results, it seems.

Are you able to get the B12 shots that you need?