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Hello to all here in the forum

I have a question for you, even if it is a thema about we generally do not like to speak about , I hope you can help me with your answers:
Since I unfortunately like many of us have MS-related bladder problems, I would be glad if you could let me know if you had improvement and which bladder control problems you had or still have: residual urine, urge ,frequency, self-cath

Thank you for your answer.

Lety

Hi Lety,

A couple days after my 2nd procedure (Aug 2011) we went out for dinner and had 2 beer and 2 glasses of water. I naturally expected to use the washroom before leaving but I had no need to do so. It was obvious to me that something was up. Improvements from this procedure lasted only 7 days

Best, PN

I definitely had improvements in the bladder control from my first and second and fourth treatments! I used to have to go about every 1 hour but on the flight from California to London I went twice during 12 hours. I am now able to void a bit naturally though it's a bit up and down. This is the aspect of the venoplasty which I find distinctly encouraging because it's an objectively verifiable improvement. There must be something to CCSVI.

PointsNorth wrote:Hi Lety,

A couple days after my 2nd procedure (Aug 2011) we went out for dinner and had 2 beer and 2 glasses of water. I naturally expected to use the washroom before leaving but I had no need to do so. It was obvious to me that something was up. Improvements from this procedure lasted only 7 days

Best, PN

Hallo PointsNorth

I`m sorry that your procedure was not succesful, do you know if you have a restenosis ? I think that if you had improvements before there is hope that it could work again.

Wish you all the best and thank you for your answer

Lety

gibbledygook wrote:I definitely had improvements in the bladder control from my first and second and fourth treatments! I used to have to go about every 1 hour but on the flight from California to London I went twice during 12 hours. I am now able to void a bit naturally though it's a bit up and down. This is the aspect of the venoplasty which I find distinctly encouraging because it's an objectively verifiable improvement. There must be something to CCSVI.

Hi gibbledygook

Thanks for your answer, this makes me courage, who must live with these restrictions knows how important the improvement in bladder function is for quality of life.

I hope other forum members will share their experiences.

All the best

Lety

My husband had the CCSVI procedure with Dr. Sclafani in April 2011. He had started in January 2010 with major bladder problems and had botox shots in Feb 2010 and Jan 2011. Hasn't needed botox since. His urologist was expecting that my husband would need botox again this year, but to date he hasn't needed. Urologist said this is very unusual. I feel this is one benefit he received from the CCSVI procedure.

Many people, but not all, have improvements in urgency and urinary difficulties after treatment, Lety.
My husband noticed this immediately...he had to get up several times during the night prior to venoplasty. After treatment, it was once a night, if at all. Dr. Dake explained this---

For example, it is now apparent that after endovascular therapy, certain constitutional or general symptoms common to MS patients, such as fatigue, heat intolerance, clouded cognition, urinary problems, cold distal extremities etc., respond in a tempo that ranges from hours to days rather than the usual weeks or months typically necessary to achieve full benefits and clinical stabilisation with pharmacological disease-modifying therapies.

http://www.cirse.org/files/File/cirse20 ... un_web.pdf

Urinary incontinence is quite common in those with normal pressure hydrocephalus (NPH) and slowed cerebral blood flow (called hypoperfusion). In fact, urinary incontinence, disturbed gate and cognitive problems are the top 3 symptoms of NPH. Increasing cerebral perfusion and movement of blood and cerebral spinal fluid seems to alleviate this in many who are treated for CCSVI. In fact, shunting for excess cerebral spinal fluid in NPH relieves bladder incontinence in many elderly.
http://www.jsnm.org/files/paper/anm/ams ... 1-1-06.pdf
http://jnnp.bmj.com/content/51/1/105.full.pdf

hope this helps explain how blood flow is related to the bladder--
cheer

cheerleader wrote:

For example, it is now apparent that after endovascular therapy, certain constitutional or general symptoms common to MS patients, such as fatigue, heat intolerance, clouded cognition, urinary problems, cold distal extremities etc., respond in a tempo that ranges from hours to days rather than the usual weeks or months typically necessary to achieve full benefits and clinical stabilisation with pharmacological disease-modifying therapies.

http://www.cirse.org/files/File/cirse20 ... un_web.pdf

I always wondered with this, what drugs he knew of that I didn't, because I had all of these symptoms and there was no relief of them from dmt's! My experience with CCSVI treatment is that it relieved symptoms that nothing else did. Including bladder frequency issues.

Thank you all for the answers and explaining