CCSVI and CCVBP

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: CCSVI and CCVBP

Postby dania » Fri Jul 12, 2013 6:59 am

TY Dr Flanagan. I no longer have a driver, so I am unable to get to any appointments. It is extremely difficult to get in an out of a car, many times not possible, too disabled. I wish there was a clinic where I could go and stay there and be treated daily for X number of weeks. I would sell my house to be able to do this. Whatever it takes.
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Re: CCSVI and CCVBP

Postby dania » Fri Jul 12, 2013 7:59 pm

Dr Flanagan ,this might sound silly/stupid but I stuck some pads on both sides of my W/C. Hugging my pelvic area. I was sitting taller and straighter in my W/C. Much less disabled, able to do so much more. Spine less compressed, muscles more relaxed. Feelings/sensations returned to normal. What would be wonderful, if I had a mold, tailored made for me, that held my pelvic bones in place. As my muscles on the left side are totally not functioning. Is there anything like that? I was actually able to move my left foot which I had not done in years!
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Re: CCSVI and CCVBP

Postby Anonymoose » Sat Jul 13, 2013 7:21 am

Sorry for the barge again...

Dania,
There are custom cushion services available for wheelchairs AND beds (maybe recliners?). People come to you to invent the perfect custom mold to hold you in the best position. I think this company might be able to serve your needs...though I'm thinking with your macgyver skills you might be able to make one yourself! http://www.ridedesigns.com/custom_program.html

I hope you find a way to get a good cushion. It sounds like it would do wonders for you. The rehab clinics look attractive too.
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Re: CCSVI and CCVBP

Postby dania » Sat Jul 13, 2013 8:57 am

TY Anonymous for the link. I need more than a cushion. My muscles in my butt, on the left side do not function any more, there is nothing holding my pelvic bones in place. Imagine a skeleton in jelly.
Last night I wedged pads on the sides in my recliner and I slept 4 consecutive hours. It has been a long time since I was able to do that. Usually I sleep, if lucky, a hour before waking up.
I think I have found the root cause for my symptoms. The fall on my coccyx 50 years ago. Look how long it took to go from perfectly fine to this state. Unbelievable. We are so lucky to have Dr Flanagan!
TY Dr Flanagan. I hope you realize what a incredible researcher/teacher etc. you are to us.
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Re: CCSVI and CCVBP

Postby uprightdoc » Sat Jul 13, 2013 10:18 am

Dania,
Custom orthoses for your chair are options but using cushions in the different ways you do that make you more comfortable or stronger makes the most sense because it isn't permanent. There are corset type belts that compress and stabilize the lumbar spine, trochanteric belts that compress and stabilize the hips, and special scoliosis belts that straighten the thoracic and lumbar spine. I would be reluctant to recommend them in your case however. I would rather see you exercise and strengthen what you have.

The neuro doesn't need studies to validate vertebral-basilar artery insufficiency, subclavian steal syndrome or thoracic outlet syndrome. They are well known. He should recognize your signs and symptoms and send you for US tests.

In hospital services are very expensive. Communities need volunteer drivers and vehicles or handicap bus services to get people in wheelchairs to doctors.
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Re: CCSVI and CCVBP

Postby dania » Sun Jul 14, 2013 7:34 am

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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Jul 14, 2013 9:34 am

I prefer to balance the pelvis and work on the sacrococcygeal ligaments to relieve the strain on the coccyx. I also work on the bladder meridian.
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Re: CCSVI and CCVBP

Postby dania » Sun Jul 14, 2013 9:44 am

Just posted it because I found it interesting.
I was wondering, because I cannot stand if this will effect my Xray? If I shift my body a few inches from one side it changes my abilities. So I assume it will look different on a Xray.
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Jul 14, 2013 11:44 am

I wouldn't take stand up x-rays in your case. I would use a table bucky and take the views lying down.
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Re: CCSVI and CCVBP

Postby dania » Sun Jul 14, 2013 12:28 pm

I posted my story on Facebook and someone responded and knows of a person in Germany who had a diagnosis of MS and had the same problem as me. This is what she wrote.

"The majority of coccyx injuries occur in women because the female pelvis is broader and the coccyx is more exposed. Trauma to this bone usually heals well, but not always. Interestingly enough those who are more likely to have a chronic problem from an injury to the coccyx are the ones who felt intense radiating pain, or shock like pain that takes a great deal of time to resolve.Because we cannot function standing or lying down, nerve damage can occur while sitting.The entire vertebral column can sustain unwanted side effects leading to one sided weakness and or nerve damage. These cases are rare but possible. Surgical removal of the coccyx can be performed as well as a "shaving"of the coccyx. I am only personally aware of one person who has MS in addition to symptoms like Dania's.She has had a surgical procedure done by an orthopaedic surgeon in addition to many other treatments. She also has a pelvic brace which I know very little about."
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Jul 14, 2013 1:49 pm

I wouldn't be surprised if there are more MS cases out there with coccygeal fractures, injuries and misalignments, especially among competitive figure skaters and gymnasts. Landing hard on your tailbone sends a jolt throughout the spine. It's hard to severely injure the tailbone and not affect other parts of the spine, such as the pelvis. The best way to check for a coccygeal injuries and misalignments is an x-ray.
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Re: CCSVI and CCVBP

Postby dania » Mon Jul 15, 2013 9:56 am

Since posting my story on Facebook so many others have told me about falling/landing on their coccyx. One woman told me with her since the age of 12, it has been a hip, knee, ankle thing. Me too. Coccyx is now on the left, my left leg is rotating inwards and my knee are jammed together. Hers too! When I put towels spreading them apart, my symptoms lessen. And when fully reclined in my recliner, taking the weight off my coccyx, my symptoms are less.
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Jul 15, 2013 10:44 am

Considering your history and complaints, it is amazing that no has taken x-rays of your pelvis yet.

Coccygeal fractures, strains and misalignments don't cause hip and knee problems. While they can cause significant pain an refer pain to the buttocks, the coccygeal ligaments are too small to exert a significant mechanical strain on the much larger hip joints or to the distal knee joints. In addition to the coccyx, a hard fall on the buttocks can injure and misalign the hips and pelvis. It can lead to permanent deformation if it occurs during the formative years. It can also cause compression fractures in the lumbar and thoracic spine and subsequent spondylosis, scoliosis and stenosis. Skiing is also associated with hard sit down type falls. I have also had many patients who injured the coccyx due to slips on stairs, as well as martial arts kicks.
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Re: CCSVI and CCVBP

Postby dania » Mon Jul 15, 2013 10:51 am

Dr Flanagan, myelin is destroyed with MS. I do not believe that is in my case. How is it my strength can vary so much just by changing positions? In my case reduced strength is caused by my muscles being restricted by contractions. When the contractions lessen or disappear my strength returns.
1) Is the mylein destroyed by spinal traumas?
2) If not, can this be verified on a person, such as myself?
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Re: CCSVI and CCVBP

Postby dania » Mon Jul 15, 2013 11:14 am

uprightdoc wrote:Considering your history and complaints, it is amazing that no has taken x-rays of your pelvis yet.

Coccygeal fractures, strains and misalignments don't cause hip and knee problems. While they can cause significant pain an refer pain to the buttocks, the coccygeal ligaments are too small to exert a significant mechanical strain on the much larger hip joints or to the distal knee joints. In addition to the coccyx, a hard fall on the buttocks can injure and misalign the hips and pelvis. It can lead to permanent deformation if it occurs during the formative years. It can also cause compression fractures in the lumbar and thoracic spine and subsequent spondylosis, scoliosis and stenosis. Skiing is also associated with hard sit down type falls. I have also had many patients who injured the coccyx due to slips on stairs, as well as martial arts kicks.

Not really a hip, knee, ankle problem, a pelvic bone problem.
http://www.wisegeek.org/what-is-a-twisted-pelvis.htm
In turn this misaligned my left leg so it is rotating inwards. You can feel my left pelvic bone is not where it should be.
Just got a requisition for an Xray. the reason never had an Xray is I have an unusual high tolerance to pain. Never felt pain from the initial fall. Broke a rib and was unaware of it until six months later after everyone where I worked had an Xray. I had been bucked off my horse six months prior. I had my appendices removed, after surgery had no pain, did not take any medication. Had a hysterectomy, again did not have any pain, no meds. Doctors in both cases were so surprised.
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