CCSVI Results for Linda Grace Cox

Alaska Brain Center, LLS
4551 E. Bogard Road
Wasilla, AK 99654

Patient: COX, Linda
Exam: MRV BRAIN Wo
Date of Service: Aug 4, 2011
Referring Physician: SPONSLOR

TECHNIQUE: Magnetic resonance venograph of the intracranial circulation was performed with 2-D coronal time-of-flight images with images retrospectively targeted and reformatted according to standard protocol. Source images were reviewed.

FINDINGS:
There is normal anatomy.
The superior sagittal sinus is patent along it’s entire length. The right transverse sinus is dominant, continuing through the sigmoid sinus and jugular vein.
The inferior sagittal sinus is not identified, likely anatomic variation. The internal cerebral veins, veins of Galen and straight sinus are seen and are patent. The cortical veins identified appear patent.

IMPRESSION:

Normal MRV of the intracranial circulation. No stenosis or occlusion.

I have to wait until my follow-up appointment next Tuesday for the formal results. From this letter mailed to me I assume I’m interpreting correctly when I say I have no need for the CCSVI (Chronic cerebrospinal venous insufficiency) treatment.

Even with insurance, this test cost $500 out of our pocket. Expensive but now I can check it off my list of possible cures.

Have you been tested for the CCSVI treatment? What is your opinion of this controversial procedure?

Linda

About our Co-Founder: With a bachelors in Social Work, Linda is 53 years old, happily married with eight children and 17 grandchildren. Diagnosed with MS in 1995 and now having accepted and truly embraced her new reality, Linda has created MSrelief.com. She is dedicated to proving that joy can be chosen while living with Multiple Sclerosis. Linda specializes in helping others, especially those with MS attain the lifestyle, independence and happiness amid living with MS.

12 Comments:

  1. Stephanie Tinney

    I’m wondering now if I should get this done. I wasn’t going to do it because of the expense but I found out yesterday, I’ve met my out-of-pocket for the year so I only owe copays. Everything else is at 100%. But the question remains: What do I do with the information if it comes back positive for the procedure? My answer at this point would be no surgery. I wonder if having the info is beneficial in other ways like being able to take meds to decrease the occlusion or something. I’ll definitely follow up with my doc about it. Thanks for sharing your story with use Linda.

    • Stephanie,
      If the cost is paid, what would it hurt? I say go for it! I agree with you, if you don’t have it, you can check it off like I did! You don’t have to cross that bridge until you get there!
      Linda

  2. I predict the true believers will come here and tell you:

    1) You didn’t get the gold standard exam and/or the operator did it incorrectly.

    But what venous issues are they actually supposed to be on the lookout for? From this meta-analysis of CCSVI “Catheter venogram remains the gold standard for venous system evaluation, however no reference data are available. ” http://www.frontiersin.org/endovascular_and_interventional_neurology/10.3389/fneur.2011.00044/full Of course this puts both positive and negative CCSVI results in doubt.

    2) You really don’t have MS then.

    Sadly, I know people that have been told this by other MSers who should be more sympathetic given the frustrating experience of getting MS diagnosed in the first place. Here’s evidence of a liberation activist questioning another’s diagnosis when they post a less than enthusiastic response to CCSVI: http://www.cochraneeagle.com/2011/08/multiple-sclerosis-patients-look-for-support/comment-page-1/

    Thank you for sharing your experience, Linda. I hope you’re not attacked for posting this information up.

    • Maria,
      Thank you for leaving your comment, talk of CCSVI creates such energy! My understanding is Sponsler’s technition knows what he’s doing and I know that I have MS! If anyone attacks me I’ll say ‘bring it on!’
      Linda
      ps. I look forward to getting to know you!

  3. Linda, I just noticed your MRV test and I wanted to pass on some info to you. The MRV has not been found to be a reliable diagnostic tool for CCSVI.
    http://www.mendeley.com/research/value-preoperative-pulmonary-function-test-surgery-flaccid-neuromuscular-scoliosis-surgery/
    This conclusion: “Conventional MRV has limited value for assessing IJV anomalies for both diagnostic and posttreatment purposes” has been confirmed by other studies as well. Please don’t rule out the CCSVI treatment based on a negative result from an MRV–It is not a reliable diagnostic tool.

    It cannot accurately see “extracranial” veins–it is more useful for intracranial viewing and CCSVI relates to veins outside the brain.
    Lori

  4. Here is more info about the MRV as a diagnostic tool.
    MRV- Magnetic Resonance Venography is a technique that uses MRI (Magnetic Resonance Imaging) technology to generate images of the CNS venous anatomy. MRIs use magnetic fields and radio waves to produce detailed images of body tissues.

    MRVs can quickly produce detailed time-resolved 3D MR images of the entire head, neck, and aortic arch areas by collecting the data before and after injection of contrast agents. These images can reveal many forms of stenosis and venous abnormalities, including agenesis, hypoplasia, atresia, twisting, and presence of collateral veins clusters and shunts. Visually, MRV can create more detailed 3D images of the venous system than other commonly available technologies. Further, specialized MRV techniques, particularly Time of Flight (TOF) compensation, can reveal blood flow rate and patterns, potentially revealing abnormal mean transit times and reflux. (More details about blood flow quantification are provided in the MRFQ section below.)

    However, MRV does have two important limitations. First, MRV’s do not yet reliably detail all abnormal valves, septums, or other membranous obstructions. Second, MRV must be taken in a supine position, and thus cannot image types of stenosis or abnormal blood flow patterns that may only effect a patient who is in the upright position (whereas duplex ultrasonography, for example, can image blood flow patterns of patients in any position, supine or upright).

    While MRV imaging and data acquisition methods are straight forward, and MR machines are common, most MRI technicians are not familiar with performing MRVs. Because accurate results from MRV scans are dependent on operator and interpreter proficiency, few MRI centers currently provide reliable CCSVI diagnostic scanning. Nonetheless, in the hands of experienced practitioners who follow approved CCSVI diagnostic protocols, MRV images can be a vital tool in diagnosing a wide range of venous obstructions and abnormalities. For detailed information on using MRV to diagnose CCSVI, please see Dr. E. Mark Haacke’s* site: http://www.ms-mri.com.

  5. Sad to say, but CCSVI treatment is not that really accurate. Although it may be a useful treatment for patients, the accuracy of the results of the treatment is not that reliable. But I have to admit that this treatment may help.

    • Candice,
      It’s just like I told Julie, I think the research is going to help us understand! I have to say, I hope that enough information will be found so patients can know if there is even a possibility that CCSVI will help!
      Linda

  6. I’ve read a couple of articles relating this procedure that there is no definite assurance that the procedure can provide positive results or not and with its cost I think some patient will think twice on trying this.

    • Julie~
      I agree that it a very expensive procedure with little guarantee for relief. I am glad that proper research is being done so we can learn enough to make informed decisions. I know from personal experience that hope for a cure motivates us to try almost anything!
      Linda

  7. Thanks for your personal marvelous posting! I
    truly enjoyed reading it, you happen to be a great author.
    I will make certain to bookmark your blog and may come
    back sometime soon. I want to encourage continue your great work,
    have a nice afternoon!

Comments are closed