CCSVI patients' log

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

CCSVI patients' log

Postby cheerleader » Thu Jun 04, 2009 5:08 pm

Hoping each patient can post the following information in this format, so we can keep track here. Please go ahead and add any other pertinent info Marie, Sharon, Holly and the gang....

patient: Jeff
diagnosis: RRMS 3/07 (at age 43)
lesions: multiple brain lesions, 20 or so, small, round and scattered ("Steiners' splashes")
one lesion on cervical spine
symptoms: fatigue, bladder issues, depression, occasional numbness and tingling in feet, leg pain, heat intolerance
EDSS: 1.5
treatments: copaxone since dx, multiple supplements, Swank diet, exercise

diagnosis at Stanford: 4/09 CCSVI- left jugular vein completely occluded with many small collateral veins, right jugular 80% occluded

treatment: 5/09 2 telescoping stents on left side, one on right side
at 4 weeks post treatment: relieved fatigue, leg pain no longer daily, much better heat tolerance, better mood and energy

7/20/09 - Balloon procedure to clean up bottom of left stent, where blood layer was too thick.

Three months post treatment....complete reduction of fatigue and brain fog. Better mood and energy. Positive and more social. Much less urgent bladder. Much less leg pain and spasms. No numbness or tingling. Better sleep, no snoring, vivid dreams. No problem with heat, able to exercise/work outdoors in full sun. Increased sweating.
Last edited by cheerleader on Thu Aug 06, 2009 7:35 am, edited 2 times in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Thu Jun 04, 2009 7:26 pm

patient: Marie
diagnosis: RRMS 2/'93 after 2 years of issues
lesions: 4 large old Dawsons, 2 newer small ones starting all brain lesions no spinal lesions ever (last spinal MRI '08 )

symptoms: fatigue, bladder issues, severe weakness on the right, drop foot on the right, right hand clumsy, use a cane all the time, inability to moderate my body temperature-cold or overheated always, a grey drawn tired look all the time,
EDSS: 6--self assessed based on unilateral support at all times.
treatments: copaxone since 96, multiple supplements, antibiotics since sept 05.

Dopplers at the UW - Vertebral vein reflux
diagnosis at Stanford: 05/18/09 CCSVI- bilateral jugular occlusion 80%-90%

treatment: 5/19/09 bilateral stents: relieved fatigue, heat intolerance much better-can take a hot shower or ride the ellipse and be usual walking getting off, more awake, alert, color good, temperature issues resolved (can drive with windows down!) at this point I am 2 weeks and 2 days out...still recovering I had a complicaiton with the femoral site so am bed resting a lot.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Jamie » Thu Jun 04, 2009 7:36 pm

If the theory holds, why does Jeff have a spine lesion but no veinal blockage there?
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Postby cheerleader » Thu Jun 04, 2009 9:54 pm

Jeff's jugular blockage was parallel to his cervical spinal lesion at c2 (high on the spine) couldn't have been any closer.
Thanks for the info, Marie!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Fri Jun 05, 2009 10:19 am

patient: Holly
diagnosis: RRMS Y2K then re-dx as PPMS later with no remissions and progression of symptoms and desease.
lesions: dawsons fingers/brain, cervical and spinal as well. no details
symptoms: severe spasticity both legs and ms hug, right side affect, fatigue, bladder issues, depression,numbness and tingling in feet, leg pain, heat intolerance, cold and purple ankle & feet due to circulation issues and lack of exercise.
EDSS: wheel chair bound to date.
treatments: anti depressant, multiple supplements, Swank diet, faith & humor

diagnosis at Stanford: 6/3/09 CCSVI- left jugular vein 99% 5cm occluded with many small collateral veins, right jugular limited narrowing, during op azygos vein stenosis and oclussion w/multiple lareg and small collateral veins.

treatment: 6/09 2 telescoping stents on left side, stent in azygos vein palix and warfarin for 2 mos to reduce any stent clotting
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Postby Sharon » Fri Jun 05, 2009 7:03 pm

patient: Sharon
diagnosis: EEMS August 2003 (age 60)
lesions: 5 small lesions in brain - MRI report states a relatively low lesion burden which is stable. Lesions at C4-5, C5-6 and C6 in cervical spine.
symptoms: left side weakness in leg and arm; foot drop on left side
EDSS: 3.5
treatments: diet, exercise, started LDN May 2008, supplements
diagnosis at Stanford: 6/1/09 CCSVI - left jugular vein 99% occluded for a length of 3" or 7.5 cm
treatment: 6/01/2009 2 telescoping stents on left side - Coumadin, Plavix and baby aspirin for two months. Off of LDN until follow-up in August.
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Postby cheerleader » Fri Jun 05, 2009 7:18 pm

Thanks Sharon...
Your jugular blockage was 3" long...wanted to post a pic of the cervical spine, to compare location of blockage and your lesions. Jeff's blockage was very high, and his lesion was at C2-3- parallel to the blockage. Your lesions were lower - from C4-6...probably parallel to your blockage, as well, about 3 inches long. Interesting, eh? I think the collateral vein leakage around the jugs created yours and Jeff's cervical lesions. We'll see if the new drainage allows for healing in this area.
Image
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Fri Jun 05, 2009 8:20 pm

Good sleuthing Cheer! so batting 1000-all patients so far have lesions that make sense for the blockage they had. That blows me away...
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Sat Jun 06, 2009 7:41 am

Cheer - glad you posted your picture - it is better than the one I was just about ready to post. I asked Dr. Dake about the correlation between my cervical lesions and the blockage. Just like you mentioned, my blockage was larger in area, but the bottom of the blockage is parallel to my big lesion that is in the cervical spine. I think Dake was surprised not to find anything in the asygous, but yet when we spoke after the procedure he said the cervical lesions were probably caused by leakage around the jugs.

Marie
so batting 1000-all patients so far have lesions that make sense for the blockage they had. That blows me away.
--Dake said just about the same thing. He is not leaving anything to "chance" though. He really did think I would have something in the asygous (even though a blockage did not show in the MRI/MRV) --that is why he went in twice to the asygous during the procedure. Sounds like something similar with Holly. Dake told my daughter not to worry if he was taking a little longer than expected - it would not be because he was having any difficulty - it would be because he was being meticulous.

Sharon
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Postby cheerleader » Sat Jun 06, 2009 7:44 am

mrhodes40 wrote:Good sleuthing Cheer! so batting 1000-all patients so far have lesions that make sense for the blockage they had. That blows me away...


Exactly! I thought it was important to note how jugular blockage has correlated with cervical spine lesions in Jeff and Sharon. The cervical spine needs to be differentiated from the thoracic spine when investigating CCSVI.

Holly's lesions were lower on her spinal column, and correlate with her azygos blockage.
Batting 1000. Who's next up?? On deck?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Sat Jun 06, 2009 7:46 am

Cheer - where did you get your picture of the cervical spine and neck?- I would like to have a copy for my reference.
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Postby Loobie » Sat Jun 06, 2009 7:48 am

I'm on deck with lower spine lesions but there are so many hitters in front of me :oops: Let's hope the batting average stays high!
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Postby cheerleader » Sat Jun 06, 2009 7:50 am

patient: Alexandra Gibbs
diagnosis: RRMS 24/3/2004 (at age 31)
lesions: multiple T2 hyperintense lesions in periventricular and juxta cortical white matter
T2 hyperintense lesion in Cervical spine extending from C3 to C4 with residual T2 hyper/T1 hypointense areas involving posterior columns. Also a lesion in upper thoracic spine.

symptoms: loss of right leg motor function. Limited to about maximum 700 meters on a good day, often considerably worse. during relapse about 5 meters. Right leg is spastic, weak,malcoordinated. Suffers severe night spams preventing sleep. Swallowing difficulties. Movement induced phosphenes affecting principally right eye. Bladder problems with frequent urgency (every hour) and hesitancy with incomplete voiding. Right arm and hand weaker with sensory deficits in right hand especially thumb and index. Major sensory deficits in left foot and leg with a burning insect under skin pulsating sensation extending to left knee. Both knees subject to sensory deficit of tight band. Sensory disturbance to face and upper body of frequent itchiness. Breathing issues. Disturbed temperature sensations at extremities. Emotinal lability.
Severe depression.
EDSS: 6.5
treatments: avonex for 1.5years with no complications/relapses. Experimental antibiotic treatment for 2.75 years with 2 relapses in latter months
Herbal experiments for 10 months using Chinese medicine with emphasis on vasodilatory herbs such as ginkgo biloba, salvia miltiorrhiza and centenella asiatica

diagnosis at Stanford: 22/6/09 right jugular venography demonstrates smooth, tapered moderate stenotic segment at C1-2 with mean pressure gradient of circa 2. Collateral venous channels are seen superior to the stensosis traveling inferiorly. On left, again at C1-2 moderate stenosis of the jugular vein with mean pressure gradient of 2. Azygous venous imaging showed no evidence for stenosis with no pressure gradient or collateral channels.


treatment: 3 Abbott Self-expanding stents were deployed. After placement collateral channels were not seen and no significant stenosis seen. Stent in right vein is 4cm by 1cm. Stent in left vein is 4cm by 1cm with additional 2cm by 1cm stent.

2 weeks later I am still in pain in shoulders, cheek bone and neck especially on the left side. Night spasms have only appeared once since treatment and weren't present during 12 hour long haul flight. Right foot flexibility improved with moderation of right leg spasticity. Bladder urgency reduced. Improved energy.
Last edited by cheerleader on Sun Jul 05, 2009 10:01 am, edited 1 time in total.
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Postby Arcee » Sun Jun 07, 2009 10:58 am

And I am a day behind Lew.
I need to track down the precise locations of my lesions and then will add them to our data file here. I do have an MRI CD all ready to share with Dr. Dake. (I personally have always avoided looking at the images. Just never wanted to see the lesions -- until now.)
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Postby chrishasms » Sun Jun 07, 2009 11:02 am

123
Last edited by chrishasms on Sat Dec 05, 2009 6:00 pm, edited 1 time in total.
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