CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby civickiller » Thu Dec 15, 2011 3:37 pm

How easy is it for an average radiologist to see a Chiari 1 malformation on a supine mri ?

a radiologist looked at my scans and said i didnt have a Chiari problem

idk if you looked at my scans i posted but heres a link to them
http://s305.photobucket.com/albums/nn23 ... 0MRI%2011/

i know Dr F. you told me once that i might possible have chiari 1 malformation before, can you please review my scans and let me know if you see chiari 1.

sorry i dont know if you need a lay a certain way but i was just laying straight on my back
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Re: CCSVI and CCVBP

Postby uprightdoc » Fri Dec 16, 2011 2:48 am

Civic
I can't tell from the pictures you sent me but it's fairly easy to see a Chiari, especially if the images are done in the upright position. Unfortunately the top of the head is cut off in one of the scan but it looks as though you may have compressed the top of the skull slightly which could have happened when you fell on it doing handstands. It would be interesting to compare your skull and scans to your twin brother.
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Re: CCSVI and CCVBP

Postby blossom » Sat Dec 17, 2011 2:19 pm

hi dr. flanagan, you know me, full of questions. i was wondering. when this does happen for me "surgery". i want the best shot of healing good. what are your thoughts about hyperbaric chamber after to promote healing. i've read athletes use them for healing after injuries and they use them for wound healing etc. any thoughts?
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Re: CCSVI and CCVBP

Postby EJC » Sun Dec 18, 2011 3:18 am

Baric oxygen treatment is used extensively by MS sufferers in the UK and has been for 25 years + there is simply no downside to pumping more oxygen through your blood.

I understand every Premiership football club in the UK has or has access to one of these chambers to promote recovery of their injured players.

Emma vists one of these every Thursday evening for an Hour, I'm the operator for that evening slot. These are generally all a voluntary thing in the UK.

The Ms Society are not interested in it here, there's no money in it for them, we're left to our own devices.
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Dec 18, 2011 5:55 am

Hi Blossom,

You are considering surgery because you want to get some of your strength and your life back. Except for local tissue swelling there will be minimal damage and consequently minimal tissue healing required following endoscopic surgery. What would be more helpful is to have the surgeon send you to physical therapy and start some rehab exercises as soon as posssible. The exercises should include light warm ups and cardiovascular workout followed by targeted arm and leg work to see if you can regain some of your strength. Exercise will increase blood and CSF flow in the body, brain and cord and it will strengthen your core muscles and extremities. Aqua therapy would be ideal. There are other options as well.

The link below is to a site with more information on aqua therapy.

http://affnet.ucp.org/ucp_channeldoc.cfm/1/15/11500/11500-11500/3168
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Re: CCSVI and CCVBP

Postby blossom » Sun Dec 18, 2011 9:16 pm

thanks dr. flanagan. i had done water therapy yrs. ago. i liked it and i understand what you mean. unfortunatly the place i went to closed down. the other places available just were not what i felt comfortable with as far as clean. i did not need any extra worries. also,my bladder issues were starting and i did not feel alone in that respect. sooo, that ended my water therapy.

but i'll do some checking again. that would be so great if the bladder issues would lighten up. i had my own fairly large hot tub indoors"i could control the temp" and it helped. but, living alone and started having difficulty getting in and out stopped that.

there are a few things i've been looking at --i don't know how the prices can be justified. -- but they do and even smile while doing so. --i know me--and it will have to be--me--and maybe the therapist or my care giver at first. the mental thoughts i'd be having in a more public surrounding would be too much for me to handle.

as always, your advice is good and i agree if somehow dooable--will do.
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Re: CCSVI and CCVBP

Postby blossom » Sun Dec 18, 2011 9:36 pm

thanks for your input on oxygen therapy EJC. does it seem to give EMMA a little boost? hopefully it has helped to slow progress. i'd like to try it sometime for reasons. some have had help from it i've read. unfortunatly here the fda does not agree i'm sure for the usual reasons we all recognize in this greedy realm of sickness.

i'm not too impressed with the portable home ones. there again, sooo pricey.
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Dec 19, 2011 12:21 am

Blossom,
Aqua therapy isn't the only option. It's just a very good option to get started with if at all doable because it is a whole body workout, it's perfect for circulation and it makes it much easier to work weak muscles. If the bladder is an issue discuss it with the therapist. You're right. You are not alone. Many patients in rehab have the same problem. The therapists may have suggestions. If dealing with a swimsuit is an issue their is a new slip on suit designed by a senior lady that is similar to a wrap. She designed it with a Parkinson's patient in mind. You step into the suit then slip your hands through the arm openings and wrap the suit across the front from side to side.

http://sliponswimsuits.com/about.php

Aside from aqua therapy there are many other rehab options as well as special devices for the worst types of spinal cord and other injuries. It doesn't matter, which method they use. Just have the doctor send you to therapy and get started as soon as you can after surgery.
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Re: CCSVI and CCVBP

Postby EJC » Mon Dec 19, 2011 2:36 am

blossom wrote:thanks for your input on oxygen therapy EJC. does it seem to give EMMA a little boost? hopefully it has helped to slow progress. i'd like to try it sometime for reasons. some have had help from it i've read. unfortunatly here the fda does not agree i'm sure for the usual reasons we all recognize in this greedy realm of sickness.

I'm not too impressed with the portable home ones. there again, sooo pricey.


The main response most "divers" report is a reduction in fatigue levels and higher levels of alertness.

The thing with any type of preventative therapy is it's a little like hanging garlic over your front door to keep Vampires out, If you've not seen a Vampire since you first hung it up it must be working!

However, what is obvious is if for some reason Emmas misses a dive, say she has a cold, then her fatigue levels increase noticeably.

The jury is out on any other benefits as there's been no blined study and it's unlikely there ever will be, there's no money in it! There is a theory that's it slows progression a little, but it's only a theory.

You will have these chambers avaialble around any seaport, they are similar to the chambers used to decompress divers suffering from the "bends"
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Re: CCSVI and CCVBP

Postby blossom » Mon Dec 19, 2011 5:05 am

hi dr. flanagan. the physical therapy will be a challenge. reason being, in my experience with any of the physical therapy outside the home the one on one is very much lacking. a few months ago when i went to supposed to be a state of the art facility i was very disappointed. yes, they had the equipment, but everything i was told before i went was a fight. from being in a room with a hundred yr. old who was freezing below 80 degrees. the equipment that would have been a big benefit to me "which had been discussed before entry" i got to experence about 4 times in 3 wks. i kept asking the therapist-have you ever worked with ms patients-finally was told-a couple. basically was drug around to end up sitting in a line up and getting a turn at doing a few little things. threatening to get the hell out of there on a daily basis-then being told "oh tomorrow" which really never happened. it wore me out-but not because of getting good therapy. the ins. paid over $26,000 plus for this. yet, will not help purchase things that will really help.

in home therapy consist of mostly paper work and someone saying lift to the count of 10. "i can do that myself." i would hand them the book showing the importance of stretching a patient. i had a little luck with one therapist. not too good of odds.

this whole system is in a mess and i fear is getting worse. cleanliness "i'm talking about" and one on one where it counts not a fancy manicured front is a thing of the past. they better wise up fast-it's a lot cheaper to hire a person with a bucket of clorox and clean things right or have enough therapist or aids to do you some good. so what if a person leaves with mrsa or worse"but then the "top dogs wouldn't be makeing their zillions." i've called our ms society here--pretty much a joke. again, the top dogs makeing way too much money off of us.

ok, now that i had a morning vent after a pretty rough night--i appreciate the input. a swim suite is not an issue at this time-but that info. is appreciated and good to know it is something needed for some.

soo, gotta get a game plan together-- on the phone again!

i just hope it goes good at the dr. wednesday. i'll get the rest figured out so i can follow your advice as much as possible.

i have a lottery ticket to check--that would help. if i hit i'd make it possible for others not just me.
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Dec 19, 2011 6:53 am

Your point is well taken Blossom. Keeping facilities clean with UV light, chlorox and chlorine should be easy. Convenient handicap bathrooms and swimsuits are a necessity. If it's not available then don't even bother. It's not worth paying a lot of money for lousy therapy that produce no results. You need a specialist.

It is unfortunate because aqua therapy is so beneficial for rehabilitation of difficult orthopedic and neurological conditions like yours. Walking upright in water is ideal for core body and extremity strength that would otherwise be challenging even with the best equipment. It can also help to strengthen the bladder.

For twenty six thousand dollars you can pack an old inner tube, fly to the carribean and hire a personal fitness instructor to get you in and out of the water. The other benefit is that the fish don't mind if you pee in the water because they do it all the time and the salt is antiseptic. Discuss it with the surgeon. Explain the significant savings and greater benefits of a month of aqua therapy in the Carribean as opposed to useless unsanitary therapy at home. See if he will write he prescription.
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Re: CCSVI and CCVBP

Postby blossom » Mon Dec 19, 2011 7:39 am

i only wish dr. flanagan. truly though, i don't know how these places get away with what they do. you can bet that the questioneer usually given after a hosp. stay or this rehab joke that they give the patient when leaveing-i praise what might have been good and don't hold back what isn't. "but they aren't listening". i can't be the only one.
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Re: CCSVI and CCVBP

Postby uprightdoc » Mon Dec 19, 2011 8:11 am

Blossom, I can't imagine you holding back.
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Re: CCSVI and CCVBP

Postby David1949 » Wed Dec 21, 2011 12:37 pm

Dr. Flanagan
Last winter I had an MRI that revealed a herniated disc at the L5-S1 level. It also revealed a lot of other damage in the lumbar region. From reading the MRI report, my spine sounds like a train wreck. It also notes canal stenosis and foraminal narrowing in this region. As I understand it the motor nerves for the leg exit the spinal column in this area. Is it possible that the "narrowing" could be interfering with signals through the motor nerves that would cause the loss of mobility in my left leg? Specifically my foot won't tip up. My lower leg won't bend up from the knee. And my thigh will not bend up from the hip. I guess I should say that there is not a total loss of those abilities, just a big reduction. Also as I've mentioned before when I yawn/stretch the leg is able to move much better.

Finally, would it cause pain if the above scenario were true? Do the motor nerves feel pain? Thankfully pain is one problem I don't have. (Physical therapy fixed the pain from the herniated disc.)

Thank you for your help
Last edited by David1949 on Wed Dec 21, 2011 2:34 pm, edited 1 time in total.
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Re: CCSVI and CCVBP

Postby uprightdoc » Wed Dec 21, 2011 1:36 pm

Hi David,

You have some good questions. The herniated disc along with stenosis of the foramen at L5/S1 would explain weakness in the feet such as standing on your toes, or in pulling your lower leg and foot toward your buttocks (leg extension), which involves the hamstrings. Weakness in raising your thigh toward your chest (leg flexion), however, comes from problems higher up in the lumbar spine. It could be that your lower back is a wreck and causing the flexor weakness as well but I doubt it. On the other hand, your condition improves with stretching and yawing, which decompresses the spinal canal and cord. This suggest to me that you may have cervical problems as well. Degenerative changes anywhere in the spine can tether the cord and cause all sorts of problems. Considering that you have possible compression in more than one area, there is a condition called double crush syndrome, which occur in some thoracic outlet syndromes. In a double crush syndrome blood vessels and nerves get compressed in two places in the arm. Neither area is sufficient to cause problems by itself but together they add up or "summate" and cause neurovascular symptoms. In this regard, you most likely have compression in several areas of your spine that could summate or add up to cause problems.

Muscles do not relay pain. Sensory nerves realy pain. Motor and sensory nerves, however, exit the spine together as nerve roots. Consequently, herniated discs can cause pain and weakness. Myopathies and muscle spasms can also cause decreases in local blood flow, called ischemia, which can provoke pain if sustained long enough the same as sticking your hand in ice water.
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