2/19/10 Update on My CCSVI Treatment

I’m still going in the right direction. Now that I am getting PT for my shoulders, I can see how much having crunched up shoulders is inhibiting my balance and hence walking. Felt great after 2/13 PT session (shoulder mobilization by PT, exercises) so I went on my first retail expedition in over a year (instead of waiting in the car, getting cell phone updates from Doug on the cookie shelf choices) . Went into a giant plant nursery and pushed the cart all over, looking for Star Gazer lilies. Followed that with a proper Valentine’s Day Anyone with MS will agree romance is a huge indicator of well being, because to get anywhere you need not only less fatigue, but nerve conductivity. Sorry about being vague, I am always torn between being blunt for the benefit of others suffering with MS, and my own bashfulness. I am so looking forward to the day when we are all post-MS victims, and I can be an anonymous person again. But right now I feel a huge weight of responsibility to be public about my progress, because there are only 60 of us who got the treatment at Stanford. We need more brave doctors like Dr. Dake!

My active weekend follows my typical pattern of recouping a shred of ability, and immediately blowing it with over exertion. By Monday shoulders were all locked up and hurting bad, back on Tylenol. Seeing the PT twice a week now. He said it could go up and down like this for several months, but the swings won’t be so wild, as the ligaments loosen up. But as soon as I am past the intense pain, I will be able to put more work into my walking exercises. Already starting that by side-stepping down the hall with the wall for support, to strengthen hip abductors needed to lift leg in walking. Also, I haven’t been to my basement in a couple of years, but over the past week I’ve gone down 3 times, and back up the stairs normally with alternating feet. Before it required left foot first for each step, then drag right leg up.

Overall I am very excited about the continued upward incline in my abilities, and suspect it will take off faster once I am over the shoulder pain.

The Bigger Picture

On the effort to get public attention for CCSVI, I was pleased to help break the story in the US media with the KGO/ABC 7 Interview Doug and I did when I was back at Stanford for follow up. They did both sides of the story, including risks, which is crucial for everyone to be aware of before they pursue intervention. They also got a brief interview with Dr. Zamboni while he was speaking at NYU. I’m looking forward to when he gets to do a full length interview with US media. Keep sending in tips to your local media!

Despite the fact that stents or angioplasty procedure are on hold in the US, it is available overseas, and patients are pursuing it. Just this week I added a doctor in the UK and one in Jordan to my list of resources. They join Dr Simka from Poland in offering CSVI treatment. Doctors in the US may frown on patients pursuing treatment overseas, but I am sure that I would have gone if I had not gotten in under the wire at Stanford.

Progress is occurring in the US, if not at the pace we patients wish for. The conference at Hamilton University of the leading doctors involved in CCSVI research was very important, because there still is no firm consensus among them about stents vs. angioplasty, or the best diagnostic scans to use. If you are considering treatment abroad, you need to ask what methods will be used, if you are found to have venous blockages. The other big news was the release of results on the first 500 subjects screened at Jacobs Neurologic Institute. See the story links on HealingPowerNow.com.

01/25/10 update – 3 months post CCSVI procedure

Shoulder pain is almost gone, I can rotate my shoulders. Can now sling my coat over shoulders and slip my arms in, without assistance. Minor pain from stents when turning neck is gone. Feeling stronger, starting to do minor exercises while prone. I still walk with a cane and not very far. If I go out with my husband I wait in the car while he shops. Now that the shoulder pain is abated, I have more energy, and will return to physical therapy once a week.  Dr. Dake said the average time for shoulders to heal up is 3 months, so I’m on schedule with that.

01/14/10 update – follow up appointment at Stanford:

Had my follow up at Stanford with Dr. Dake,. Left jugular previously 95% blocked, right juggler 85% blocked are now both at 100% open flow, everything looks good, I did not have to go in for 2nd procedure. No cell overgrowth or build up. My stenosis where caused by mechanical obstructions, the high internal jugs were crushed against cervical vertebrae, the lower left jug was impinged by the carotid artery mashing into it. I took a print out of the earlier MRV images so I could label it properly, new images are posted here.

I reported the following improvements at follow up:

Painful morning extensor spasms in calf muscles were gone after three weeks. Night time leg contracture spasms that would go on for hours, stopped 2 months after procedure. I still have some tone/stiffness in legs, but it is abating. No more icy hands and feet, they are now warm, and I don’t have to wear wool socks to bed. Urgency has lessened by 50%. Energy has picked up, and balance has improved.

Status update 12/06/09 5 weeks post CCSVI Procedure

This is going to be a short update because shoulder pain has been keeping me from typing. Shoulders started to get markedly better yesterday but I’m not going to push it. Also had some trouble with warfarin, low hematocrit (close to transfusion level) due to heavy menses for 17 days lead to passing out and 2 trips to the emergency room. Off warfarin since 11/29, taking an iron supplement and feeling better. Yes, ironic given the iron overload in the brain, butcha gotta have iron in the blood too. I will get my log posted, seeing some exciting and significant improvements in long-standing physical problems (improvements in heavy leg feeling, urgency, balance, walking, toe drop, fatigue, spacticity, extensor spasm).

But this is a difficult recovery for someone with significant disability to begin with (SPMS 15 years, EDSS=5.5). I had worse disability the first week after stents, for the first time my arm movements were weakened (husband had to lift me in and out of bed). What drove me to take the plunge was 3 relapses over the last two years (triggered by fevers) that added new and lasting disability. I felt the next relapse could leave me bed ridden, so I felt I had to take immediate action.

At the bottom of my images page  I added the x-ray from one month after stents. To my untrained eye, it seemed there was a big difference in the space between upper and lower stents, but I sent it to Dr. Dake and he said this was due to parallax, different camera angles between the flouroscope and the x-ray. Tip: keep your stent procedure notes and Dr. phone numbers handy if case of trip to ER. Once the doctor, nurses and techs saw the report from Stanford, the X-Files suspicion lifted, and they were excited to hear the CCSVI hypothesis.

Think carefully about this decision, it does have risks, and not everybody is reporting immediate improvements. All I can do is go to physical therapy every week and do my daily exercises, but I will keep track and share my results. LDN was my first “get out of jail free card”. It gave me a great four years of recovery, but started to slip the past two years. I hope this is my second card. I am about n=60 in our joint experiment, and look forward to the unfolding outcome.

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