Baseline Status & Tracking Log Since CCSVI Procedure
To see Tracking Logs of others visit ThisIsMS
SammyJo
Female
Age: 45
MS History:
1995 diagnosed RRMS, 2002 diagnosed SPMS
Lesion locations: Brain MRIs show various lesions, black holes & Dawson’s Fingers, but no new brain lesions since 2000. Long lesions along the spine (C2, C3-7, T3-4, T6, T12) and one section shows spinal column atrophy. Devic’s antibody test=negative. Optic nerve atrophy found 2008, blank spot in right eye vision.
MS treatments:
1995-98 Corticoidsteroids (MS worsened).
1998-02 Copaxone (MS worsened).
2002 Novantrone chemo 1 year, 7 doses (MS worsened, heart function decreased).
2003 Avonex & monthly steroids for 6 months (MS worsened).
LDN since 2/2004 (MS improved 4 years, worsened last 2 years).
Exercise, Physical Therapy, Feldenkrais, Cranio-Sacral. Healthy MS type diet, Vit D3, Fish Oil, many supplements.
Inclined Bed Therapy: Yes. 12/25/09 elevated 3″, night time leg spasms stopped immediately. 1/3/10 elevated 6″.
MS symptoms before stenosis intervention:
Violent onset with relapses every 3-6 months for first 2 yrs, optic neuritis, temporary blindness, dizzy, loss of balance, urinary urgency, fatigue, chest tightness, heavy legs, heat intolerance, cold hands/feet, numbness/burning sensory issues, leg spasms at night, cognitive/memory problems, word mix-ups.
MS got worse during/after chemo, started using cane first time 02/2003, R. leg atrophied and dragging. All symptoms worse, 2-4 falls/month, extreme ataxia, house bound. 12/2003 doctor recommends powerchair. 01/2004 had to stop monthly steroids because veins so scarred from Novantrone; doctor suggests chest port.
02/2004 Started 2mg LDN; for first time in years, slept 8hrs straight with no leg spasm, no bathroom. 4/6/04 last day I used my cane, cancelled powerchair and chest port, all MS issues and physical strength improved for next 4 years until 2008, then decline set in again and returned to cane use. Cognitive function has remained good since 2004. Details on LDN experience (link). Stopped LDN for CCSVI procedure.
Condition going into procedure: haven’t driven myself, or left the house much since 06/2009, due to fatigue, inability to walk far with cane, urgency, fear of falling. For the trip to Stanford Doug had to push me in a wheelchair everywhere.
Number of relapses before intervention (if applicable):
9 relapses 1995-2000, 3 relapses 2008-09 triggered by fever from flu.
EDSS before CCSVI intervention: 5.5 (MS doctor assessed 4/2009)
EDSS 6.0 10/2009 (self assessed)
FSS before CCSVI intervention: 6.0 (range 1-7)
MSIS before CCSVI intervention: 74 (range 1-144)
Have you had a procedure for stenosis yet: Yes
STENOSIS PROCEDURE HISTORY
Date/location of testing & procedure:
Stanford Hospital Medical Center, MRV test & Stent procedure 10/29/2009 .
Type of venographic study: MRV top of head to thoracic area.
Diagnosis: Stenosis in left and right internal jugular veins, behind mid-ear, and stenosis in mid-left jugular. Extensive collateral pathways. Flow pattern abnormally delayed at valve of left jugular & subclavian vein.
Type of procedure: Absolute A Pro 9.0 Stents were placed in following locations:
Right internal jugular (8mm diameter, 40mm long) inserted at C1-C2 level
Left internal jugular (7mm diameter, 40mm long) at C1-C2.
Mid-left jugular (8mm diameter, 30mm long). Lower left jugular valve balloon dilated 10mm, no stent.
Images of MRV & stent placement http://healingpowernow.com/stenosis_images.htm
Procedure/drug related symptoms:
Week 1 no strength in arms, extreme neck pain, very bad headaches, need walker around house. Week 2 shoulder pain started, became very intense, started to improve about week 7. Just using Tylenol for pain. Week 4 had trouble with warfarin, low hematocrit (near transfusion level) due to heavy menstruation for 19 days lead to passing out and 2 trips to the emergency room. Dr. said to stop warfarin & plavix 11/29.
2 month follow-up MRV: Scheduled for 1/14/10.
Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words:
[11/19/2009] Week 3: First thing I noticed immediately after procedure was the heavy leg syndrome disappeared. Can walk farther with support, but now I get tired from exertion, rather than legs turning to cement and refusing to move. Saw physical therapist and was surprised when he asked me to tap my right foot, and I could, 10 times. Then I held a support and jumped on my toes. Neither of these maneuvers was possible for the past year. Morning extensor leg spasms are not as bad now, but nighttime leg spasms are back.
[12/05/2009] Week 6: still weak from warafin problem, but shoulder pain starting to lift finally. Foot drop improving.
[01/09/2010] Week 10: shoulders much better, headaches gone, can sleep on my side again. Morning extensor spasms are gone, and night time leg spasm stopped with IBT on 12/25. Urgency is still an issue, but improved. Energy picking up, yesterday I tidied up the kitchen for the first time. Doug was able to take a 3 month leave from work while I recovered, and he has done all the housework & cooking. Only painful thing is a twinge in left mid-jugular stent area when I turn my head to left suddenly. Returning to Stanford this week for 2 month follow up. I will post an update on those results, then monthly.
As of this update: EDSS=6.0 (self-assessed), FSS=5.5, MSIS=60
For discussion or questions on my updates see (link).
All my updates and images in one place at healingpowernow.com
Sammy Jo- You are an inspiration to all of us. I admire your courage, determination, and relentless spirit. Thank you for all of your tireless efforts and for sharing your story with us.
Dear SammyJo: My progreesive MS is so much worse now that I cannot leave my recliner. I have an appointment to have the proceedure in Brooklyn, N.Y. in June, but I’m concerned about possible dangers of the surgery. Any information you could pass on I’d sure appreciate it. It’s so exciting that your experience such forward progress. I hope you regain the quality of life you want. Peace, Cynthia
Cynthia, I’ve tried to detail the risks as well as benefits that I have seen with my CCSVI treatment. Just prepare for the worst, like being bed ridden for weeks or months due to shoulder pain. But hope for the best, maybe you will only need angioplasty and not stents, which presents less risk of damage to the nerves in the neck. And congratulations for having the courgage to make your appointment, we are still early adopters, because intervention trials have not occured to confirm Dr. Zamboni’s intervention trial.
Hello!
I’ve noticed that you haven’t updated your site in over a month. Are you ok????? OR simply too busy to post?
Sammy Jo,
This is so courageous to be honest with people about the results/challenges of the treatment. How does a person line up a doctor for the Liberation treatment? We live in Montana and have heard Washington is doing treatment. Do you know where this is?
My son is turning 30 on April 17 and is progressively having more difficulty walking—even wall walking is becoming terribly difficult. Is there anything that helps with chronic colitis? That is an additonal challenge.
Thank you for being so kind to share your experiences—good/bad—it is helpful!
Colleen Hansen
More doctors are doing CCSVI procedures in the US. For the colitis, IBS, Chron’s there is definately help, Low Dsse Naltrexone, see http://LDNers.org
I’m curious, in how many independent experiments does the null hypothesis have to be supported before we can reject the original hypothesis? I am (because I am not qualified or knowledgeable)not suggesting two studies reach this threshold for CCSVI. There must be a point at which we can safely say the hypothesized relationship has failed across enough varied paradigms to be deemed falsified.
With medicine the stakes are high. One would hate to be premature and miss a potential diagnostic or treatment regimen. However, the funding is not unlimited, nor are the number of research hours.
Both the sufferers/fundraisers and the researchers should have input; however, the question is, to what degree.
Interested in feedback. Thanks. Get screened in the US. Check out http://www.ccsviclinic.ca/ for more information. Call (404)461-9560 to schedule your pre- and post procedure screening today in Fargo, ND. You can also email them at apply@ccsviclinic.ca.
The CCSVI Liberation Treatment could be the cure but fact remains that the rate of re-occlusion is stuck at 50% and MS patients being treated in the European and Asian countries end up suffering as they did, 3 months ago. While Big Pharmaceutical Corporations and governments in the US and Canada are coming up with new ideas to stop any advancements to the CCSVI theory (Like the superbugs, etc.), millions continue to travel to countries like India and Poland to get this simple procedure and no valuable data is recorded to support the CCSVI theory. Unless we get our position strong enough to support the CCSVI Theory, we will never be able to beat the Pharma Corporations or start the treatment here and many will keep suffering and dying even after having the procedure done. I lost my elder brother last month because of a blood clot in his stent. He got liberated 5 months ago in Poland. We need to prove to the government that this works. Non-profit organizations like the CCSVI Clinic http://www.ccsviclinic.ca/ are tirelessly working to develop safer protocols with teams of world renowned surgeons even though they are feeling the negative pressure from you know who. This Atlanta based Organization has started Clinical Trials for CCSVI and we need to support these groups because they are our only hope to fight for the truth. Without the valuable data that they are collecting offshore, the procedures will not be allowed here, in our own countries.
Jessica,
My heart goes out to you, this is a terrible tragedy that happened to your brother. Thank you for continuing the fight for others to get safe treatment in their own country.