information needed

[crshelton]

First time here. My mother has MS. She has been laying in a corner room in a nursing home for 8 years and she is only 62. She cannot walk. She sees her neurologist once a year. I need information regarding how to get her ccsvi treatment. In our minds, it is worth any risk. She is very dear to me and has so much life ahead of her. I don't want to see her rotting away anymore and the care she is receiving is basically the "we give up" care. Praying for a miracle. She just cannot walk and she shouldn't have to settle for no treatment. She is a great fit for ccsvi, I just cannot find any information on where we could get her in to see a specialist. Please help me, I need to fight for her because she would not take no for an answer if it were me. Thank u and God Bless.

[lyndacarol]

First time here. My mother has MS. She has been laying in a corner room in a nursing home for 8 years and she is only 62. She cannot walk. She sees her neurologist once a year. I need information regarding how to get her ccsvi treatment. In our minds, it is worth any risk. She is very dear to me and has so much life ahead of her. I don't want to see her rotting away anymore and the care she is receiving is basically the "we give up" care. Praying for a miracle. She just cannot walk and she shouldn't have to settle for no treatment. She is a great fit for ccsvi, I just cannot find any information on where we could get her in to see a specialist. Please help me, I need to fight for her because she would not take no for an answer if it were me. Thank u and God Bless.

Welcome to ThisIsMS, crshelton. Your mother is very fortunate to have such a caring child as you are.

We understand your desire to pursue any treatment that might improve her situation. Your post here at the Chronic Cerebrospinal Venous Insufficiency (CCSVI) forum is sure to get you the information you are seeking.

You are wise to investigate every avenue. Since my current focus is on vitamin B12 deficiency and 40% of the American population is estimated to have suboptimal level, I hope your mother's GP or neurologist has thoroughly screened your mother for this possibility. Any person at any age can develop a B12 deficiency; people over age 50 are at increased risk.

If testing has not been done, it might be just as easy for her doctor to order a diagnostic trial of B12 injections since these could be easily administered by a nurse at the nursing home where she is. The methylcobalamin form (a.k.a. methyl B12) is more bioavailable, more easily used by the body, must be specifically requested from a compounding pharmacy. Unfortunately, US doctors routinely order a different form (cyanocobalamin) which is not readily absorbed by the body. Vitamin B12 is inexpensive; it is not toxic; any excess that her body does not use will be flushed out in urine.

We admire that you will "fight for her because she would not take no for an answer if it were [you]." May God bless you and your mother.

[cheerleader]

Hi CR--
welcome to the forum. I got the CCSVI treatment going in the US back in 2009 for my husband, because I felt so strongly about understanding how to help him---just like you feel with your Mom. Love can move mountains.

CCSVI treatment is most effective in those, like my hubby, who can stay mobile. Does your Mom have physical therapy available to her at the care facility? She must! No one should give up on her or moving her limbs. How about her nutrition? Do they give her lots of leafy greens, fruits and whole foods? Can she get outside and get some sunshine? I will be honest with you----simply treating venous malformations and not being able to address other vascular issues won't be a lasting help for her. That may sound harsh, but I've been following this research since my husband was the first....and the best results are found in those who can stay active, eat well and keep their cerebral blood flow going.

See if there is any way to get your Mom PT at the nursing center....even if it is seated exercise. A massage and bath can help circulation, too. Get her nutritious meals, even if you have to bring the veggies in yourself. Wheel her out in her chair and get her sunshine. Bring funny movies and watch them together and laugh. Hug her, be there for her. And then, seek out CCSVI treatment. We'll be here to help you find safe treatment near your home.
I agree with Lynda---may God bless you and your Mom and whole family,
cheer

[crshelton]

Thank you for replying. A bit of my Mom's history... She was on Iron Supplements, diagnosed with hypothyroidism, loss of bladder control, pins and needles sensation in her feet and paralysis let to diagnosis of MS. She has lesions on brain and spinal region which have not changed in years. Coincidentally, the lesions have not changed since she stopped taking iron supplements. This is the reason that I am seeking information regarding ccsvi.
Due to not being able to move from waste down, she has gained weight and is only able to get out of bed once per week by using a lift. At that time, she receives a bath and they put her back in bed. Her mind is the same, she is always full of life and happiness and concern for the welfare of everyone except herself. I want to do the best I can finding information to at least try a treatment and be able to get her out of nursing home. She has tried different medications and last year she noticed she could wiggle her toes. She does not get PT anymore, her diet is terrible because it is a nursing home and everyone is fed the same meals. She has the option of peanut butter sandwiches when they serve things she doesn't care for.
Unfortunately, I live 1500 miles away due to work which is why I am trying to use Internet to begin a journey to helping her.
Seems like iron is a key interest as the lesions could be iron stored in her body from a blockage, also inhibiting her thyroid from working properly. She took iron prescribed by a doctor for 20 years before MS symptoms took over. Any insight or direction pointing to someone near southwest Virginia that practices ccsvi would be appreciated. I know that it is a battle to get the treatment I am seeking for her, and that there are problems and uncertainties, but I have Armour on for that which stands in the way. I believe EVERY THINGS is possible when you have faith, my Mom lead by example. Thank you so much for your information and prayers. God Bless.

[cheerleader]

The iron which is found in the brains of those w/MS may simply be due to blood particles being deposited in brain tissue, due to microbleeding in the MS brain, which could be caused by CCSVI. So, it's not just about iron levels in the blood. All blood has iron in red blood cells, even those with anemia! So, those iron supplements, while not a great thing, would not have caused your Mom's problems. Here's more about current research on blood and MS- http://ccsviinms.blogspot.com/2014/03/b ... tters.html
Your Mom's hypothyroidism could also be linked to CCSVI and slowed venous return, since the thyroid veins are an alternative route for collateral blood flow when the jugular veins aren't working.

Getting her scanned for venous malformations and potentially treated can be done somewhat near your Mom---the new President of the International Society for Neurovacular Disease and CCSVI expert is Dr. Ziv Haskal, and he practices at the University of Virginia and in Baltimore, MD.
http://www.healthgrades.com/physician/d ... skal-xsm43

But I am going to be adament that you try to help her improve her nutrition and get PT, too. Yes, it's hard being 1500 miles away, and difficult working with a care facility that has given up on her...but with your attitude and faith, you can do it! Encourage your Mom to be a squeaky wheel and request services. If she can move her arms, she should be doing that, eventually using hand weights. She can also ask for a double serving of veggies and less fatty food. She can drink water, no soda. Send her fresh fruit, no candy.
Watch Dr. Terry Wahls talk about the importance of nutrition and exercise in her healing from progressive MS. She was in a wheelchair, and is back to biking.

hope this encourages you--
cheer

[Cece]

I started taking green tea supplements after learning more about iron in the brain. The active ingredient in green tea can cross the blood-brain barrier and might be able to remove iron.

Can you afford to pay for CCSVI treatment if insurance doesn't? It might be around $9000 plus travel expenses. First thing to do would be to get her tested using doppler ultrasound, but if you need to travel for testing, then they can schedule testing one day and treatment the next day if blockages are seen in the testing.

Dr. Haskal, as mentioned above, would be the best fairly-local choice if available, because he has done a fair number of CCSVI treatments. Some other doctors listed here: http://ccsviclinic.info/index.php?title ... ted_States Dr. Jamie Urso is in Virginia but he can't have done very many CCSVI treatments and might not be as good of a choice.

[1eye]

Dr. Sclafani can probably tell without putting a catheter in a vein. His diagnosis involves IVUS (which is via catheter). I would only bother with testing if I were fully prepared to get my veins ballooned at the same time.

Save your money for follow-up testing, as that may be very important. IF you do seem to have a worsening of symptoms, it might be wise to give it a month. Don't be in too big of a hurry to get re-treated. The doctor is the authority, so don't listen to me. Any procedure has risks. Best of luck.

I am not a doctor and do not give medical advice.

[Rosegirl]

Have you tried contacting the Virginia state authorities in charge of nursing home care? Unless she lives in a very remote area, common standards of care may require better conditions including exercise and nutrition. If that doesn't work, can you check with her doctor and have meals mailed to her by one of the diet companies?

There's a lot you can do remotely, especially now that everyone has cameras (that do video!) on their cell phones. Make a stink if you must!