venous valves

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
Robnl
Family Elder
Posts: 668
Joined: Sun Nov 08, 2009 3:00 pm
Contact:

Re: venous valves

Post by Robnl »

drsclafani wrote:
Robnl wrote:Hi Vesta,

You mentioned swimming; i can not walk without help. when i 'walk' to the pool supported by 2 persons (left/right) it's very difficult to go into the pool. After walking around in the pool for an hour, getting out of the pool is much easier. My 'supporters' notice that very well, because i lean much less on them than when going in.

Must be better bloodflow, i'm sure...
many patients say that they h ave more energy after they cool down. Could that be the explanation for you?
Hmmm, outside temeperature does not seem to have influence...10 degrees C or 27 degrees C (it's a pool at our holiday home, we swim from April to October in weekends en during 3 week holiday in august)

I think it has to do with the movement in the water, i can walk in the water significantly better and easier moving around than outside the water.
And hasnt movement a positive influence to the blood flow? Although i got no idea what it does to my hypoplastic azygos....
vesta
Family Elder
Posts: 696
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France
Contact:

Re: venous valves

Post by vesta »

Hi Robni:
Of course it is movement in the water which gets the blood circulating. I was just saying that exercise which heats up the body for MS patients can actually make them feel worse whereas exercise in the water prevents the heat build up. Can you try kicking your legs in the water by lying on your back (or front if you have help), in other words swimming in some way? That really gets the whole body moving and the blood circulating through the brain. During the summer I can swim every morning now and that dramatically improves my health. (Only drawback. Swimming can weaken the quadriceps muscles since other muscles in the legs are at work, so I have to do deep knee bends afterwards to keep those muscles in shape.) A good swim actually is more effective than acupuncture in getting the blood moving.

Dr Sclafani: I don't know why heat weakens MS patients but it does. Swimming allows for body movement without the heat build up problems. Meir Schneider who has been very successful giving exercise treatments to paralysed people put a cold cloth down the whole length of my spine which allowed me to lift my legs which I couldn't do before. (He also uses acupressure points to strengthen muscles as do kinesiologists.) During the summer I can swim every day. I can feel the blood stagnating in my brain which brings on a heavy depression, and after a swim I'm freed and in heaven. Blood circulation.
User avatar
Robnl
Family Elder
Posts: 668
Joined: Sun Nov 08, 2009 3:00 pm
Contact:

Re: venous valves

Post by Robnl »

Hi Vesta,

I understand, but i dont get worse from the heating of exercise.
Sometime i can not climb' on the walking bel at the physio; just can lift my foot. Then i do other execises (leg press, torsion) after that a 5-10 minute break and.....there i go on the walking belt
User avatar
drsclafani
Family Elder
Posts: 3182
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Re: venous valves

Post by drsclafani »

ljelome wrote:Dear dr. Sclafani,
Dr. Sclafani wrote:
I think that you might discuss your condition with Prijo Sidiprotomo in Jakarta. An old friend of mine, he might try to help you. just a guess
Aigoo dr. Sclafani, u know what? dr Prijo Sidipratomo is my IR, i already discussed about CCSVI with him. He agreed for me to do the non-invasive exam to determine whether i have that condition or not. He is a very cautious doctor coz invasive exam could risk the blood vessel to damage. So he preferred me to go for CT Venogram n Doppler USG available in the hospital i've been treated.

My sonographer is a neurosonographer, his name is dr. Girianto T. He is the best one in Indonesia, so he admitted, but he has little knowledge about CCSVI examination using Doppler USG. That's way i brought him literature about Zamboni protocols n Karren Marr's video so he could do the correct procedure.

Thank you dr. Sclafani for your help n information.
Next time you see Dr Sidiprotomo, please give him my regards. Perhaps I can visit him at some conference and give lectures on CCSVI and then help him do your procedure. Just an idea.

DrS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
drsclafani
Family Elder
Posts: 3182
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Re: venous valves

Post by drsclafani »

Robnl wrote:
drsclafani wrote:
Robnl wrote:Hi Vesta,

You mentioned swimming; i can not walk without help. when i 'walk' to the pool supported by 2 persons (left/right) it's very difficult to go into the pool. After walking around in the pool for an hour, getting out of the pool is much easier. My 'supporters' notice that very well, because i lean much less on them than when going in.

Must be better bloodflow, i'm sure...
many patients say that they h ave more energy after they cool down. Could that be the explanation for you?
Hmmm, outside temeperature does not seem to have influence...10 degrees C or 27 degrees C (it's a pool at our holiday home, we swim from April to October in weekends en during 3 week holiday in august)

I think it has to do with the movement in the water, i can walk in the water significantly better and easier moving around than outside the water.
And hasnt movement a positive influence to the blood flow? Although i got no idea what it does to my hypoplastic azygos....
but generally you are warm in clothing during winter. In the water there is lots of opportunity to exchange heat through the skin
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
Robnl
Family Elder
Posts: 668
Joined: Sun Nov 08, 2009 3:00 pm
Contact:

Re: venous valves

Post by Robnl »

]Hmmm, outside temeperature does not seem to have influence...10 degrees C or 27 degrees C (it's a pool at our holiday home, we swim from April to October in weekends en during 3 week holiday in august)

I think it has to do with the movement in the water, i can walk in the water significantly better and easier moving around than outside the water.
And hasnt movement a positive influence to the blood flow? Although i got no idea what it does to my hypoplastic azygos....
but generally you are warm in clothing during winter. In the water there is lots of opportunity to exchange heat through the skin
True ofcourse, the body is always warmer than the water. Hmm, maybe
Stand stil for an hout in the pool to test :lol: :lol:
User avatar
drsclafani
Family Elder
Posts: 3182
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Re: venous valves

Post by drsclafani »

Robnl wrote:
]Hmmm, outside temeperature does not seem to have influence...10 degrees C or 27 degrees C (it's a pool at our holiday home, we swim from April to October in weekends en during 3 week holiday in august)

I think it has to do with the movement in the water, i can walk in the water significantly better and easier moving around than outside the water.
And hasnt movement a positive influence to the blood flow? Although i got no idea what it does to my hypoplastic azygos....
but generally you are warm in clothing during winter. In the water there is lots of opportunity to exchange heat through the skin
True ofcourse, the body is always warmer than the water. Hmm, maybe
Stand stil for an hout in the pool to test :lol: :lol:
careful, get too cold and you might stiffen up

i find it ironic that i have many patients who are intolerant to heat as it causes them to get weak, but also intolerant to cold as it causes spasticity to act up
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
CuriousRobot
Family Elder
Posts: 173
Joined: Tue Nov 02, 2010 3:00 pm
Contact:

Re: venous valves

Post by CuriousRobot »

Goldilocks.
vesta
Family Elder
Posts: 696
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France
Contact:

Re: venous valves

Post by vesta »

Hi Robni:
My messages keep getting cancelled. When I visit the Kiné (physical therapist), often I can’t lift my leg well but once the “mechanism” gets going (muscles, nerves etc) then I can do the exercises. Sounds similar with you. I can’t exercise energetically enough now to get overheated anyway, swimming is the most energetic exercise I can do. I have a problem knowing my limits. I was a ballet dancer once and one takes pride in pushing oneself to the limit, so now I’m careful not to set myself a goal because I get stressed (bad memories) and then finish with a minor “attack”. Sounds like you are keeping in shape. Keep on exercising in the pool when you can. Thanks for the input.

Dr. Sclafani: If I get a fever or even take a very hot bath my legs turn into noodles, on the other hand if the water in the pool is too cold my muscles start to freeze up (otherwise I don’t have a spasticity problem.) so I try to keep the water temp at 27° C Lack of myelin sheath leaves nerves unprotected?

No, CuriousRobot, it’s not Goldilocks, it’s Princess and the Pea.
User avatar
NZer1
Family Elder
Posts: 1624
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Re: venous valves

Post by NZer1 »

I also wonder whether the Vascular changes from PTA or the blood flow changes as such are the tip of an Iceberg of things that are modified or changes by PTA.
There are many interlinked systems that the blood flow influences and to isolate the health gains as being blood flow only is limiting our knowledge of 'MS' and other degenerative diseases that are implicated in CCSVI.
It is almost like Neuro's using the comment, 'Oh it's because of your MS' whenever you ask questions.

Regards,
Nigel
ljelome
Family Elder
Posts: 126
Joined: Fri Jan 25, 2013 8:46 pm
Location: Jakarta, Indonesia

Re: venous valves

Post by ljelome »

Dear dr. Sclafani,
Next time you see Dr Sidiprotomo, please give him my regards. Perhaps I can visit him at some conference and give lectures on CCSVI and then help him do your procedure. Just an idea.
Yes, i'll sure give him your regards if i meet him again. And yeah please dr. Sclafani, if you ever meet him, please explain to him about CCSVI. It will help alot for pwMS here in Indonesia.

Thank you very much for your help.
Warm regards,
Linda

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”