My CCSVI Status

Third CCSVI Procedure

Here’s the summary on my 3rd CCSVI treatment, provided for all of you trying to make decisions.

The “unforeseen events” that kept me from attending the CCSVI Seattle event: my symptoms took a nose dive on Jan 17, so I decided it would be best to avoid any grueling travel, and booked an appointment with Dr McGuckin for 1/28 in Seattle. I didn’t have any expectations, and no first hand reports yet from anyone treated by him. Feeling like a failed case, maybe incurable even. But I knew there were a few veins that hadn’t been evaluated yet, like the iliac, so that was my slim hope. When I asked if he would investigate all possible blockage locations he said “I follow the Zamboni protocol to a T”. And he had an approach I hadn’t heard of before, doing an ateriogram to capture the entire blood flow picture, not just the venous return side. He has done over 70 ccsvi cases, but he is in familiar territory with the central veins involved in CCSVI (like the jugulars, azygos and illiac) because his practice focuses on diabetics whose central veins need repair.

The venogram + ateriogram took 2.15 hours. I had emailed the Hubbard Foundation Registry form to his clinic nurse, Pat Shaw, but I didn’t have time to ask him if he would do it. When he came to update us after recovery, he seemed very pleased to present me with the registry page, where he could quickly walk me through the procedure. He had found and ballooned blockages in every vein on the list, including all the spots ballooned or stented before, which had restenosed. The left stented IJV was collapsed too, and wouldn’t respond to a balloon, so he had to insert another stent inside the previous 2 stents. I wanted a bottom line assessment of my situtation, he said I am still going to be prone to restensosis. But the good news was I had full speed blood flow from this procedure, and the left side that had no flow before was now equal with the right. For some of us, restenosis is going to be a sword of Damocles over us, until new inventions the dissolving stents are here. I will just keep my attitude & hydration up. I am relieved I now have a local option, so it won’t seem like a monumental decision if something feels wrong, I can just go to Tukwila for a check up. He also gave me a referral for a naturopath he treated for CCSVI, who is up on all the supplements and healthy habits we need to follow. This is nice to see the CCSVI-aware medical people expanding, because after CCSVI I’ve felt a bit like a medical orphan in my own town.

The cost at VAC for CCSVI treatment is the lowest I’ve heard so far, even less than foreign clinics.

Normally I would wait a couple weeks to report, but this is the best recovery so far. I didn’t have any serious down time like before, maybe because I wasn’t hammered from travel stress. Immediately my energy is up, my legs don’t feel like they are filled with cement, I can lift my feet higher. The painful extensor spasms that froze my legs in the morning are gone after 3 days. My hands and face are also very pink. My nails look so white in contrast, it’s like a French manicure.

The Hubbard registry is nice and simple. There’s an immediate patient benefit, I know exactly what has been done. Secondly my results will be part of the research. Consider taking this to your doctor too. Instructions here: http://hubbardfoundation.org/CCSVI_patient_registry_intro.html
They are asking for a donation to help cover the cost of running the registry, but this is one way patients can make the research happen, by supporting it themselves!

SammyJo’s CCSVI 9 Month Update

My whole MS history and CCSVI experience is in earlier posts below, but here is a quick background:  MS since 1995, secondary progressive since 2002. Eight years of standard MS drug therapy did not help me, although I had 4 good years on LDN, but that quit working too. Currently EDSS 6.5 walking with two fore-arm canes, so I’m not supposed to get too excited about recovery, just hope to slow/stop progression. My first treatment for CCSVI was Oct 2009. Both jugulars blocked, corrected by stents and angioplasty by Dr Dake at Stanford.

After the October stent treatment I saw some impressive MS improvements, then started to get worse again by May. I thought the MS symptoms might be worse because of nerve damage/pain caused by the stents. So in June I got a doppler exam (Zamboni protocol) at Univ. WA Vascular Lab, and they found my left jugular was again showing reflux when sitting up, no flow when supine.

I returned to see Dr Dake mid July. An MRV did not reveal any new stenosis. During the venogram, he spent lots of time investigating the azygos. He didn’t find any obvious stenosis, but he did three balloons on areas that looked narrow. Did not see any turbulence in the left jug either, he said this could vary from the doppler findings because even the presence of the catheter can alter the flow. The second time was definitely an outpatient procedure, I was discharged after 4 hours in recovery, and had no pain. Being part of the early experimental phase was tough, but I’m glad I did it, and seems issues like nerve damage have been resolved so the procedure is becoming safer. There’s worry about will the stents last, but I am going to rest with my doctor’s opinion these will last a lifetime; he’s seen lots of these in action.

I’m blunt about my symptoms, because that is what others with my degree of MS need to know if they are considering treatment, or working on recovery after CCSVI treatment. Following second procedure, three weeks now of steady improvements. Able to work out on the floor mat again, been down the basement stairs twice to ride my exercise bike for 15 min. First time I’ve been on it since 2008. I go out of the house for a drive with Doug once or twice a day. Before I wasn’t going out at all due to fatigue and bladder urgency, both are improving. Yesterday I was able to walk across an empty room with no support, so balance is coming back. Two symptoms that went away w/i a few months after the 1st procedure are still gone, nighttime leg jerks and constipation. Spacticity and lower leg spasms in the morning also resolved, then came back, still waiting to see if this problem goes away again. I can’t predict if my veins will give me more trouble, but feeling optimistic about the future, and much better quality of life already.

A fun surprise. At the beginning of procedure, I heard someone being introduced to the surgery team as a med student observer with a personal interest in CCSVI, so I called her over at the end of the procedure. That’s when she told me she was Carol Schumaker’s daughter. Carol just organized a fundraiser in San Diego for Dr Dake MS Innovation Fund, and raised over $15,000 for Dr Dake’s MS/CCSVI research. Click here to see ABC7 interview with Carol, and click this video of Dr Dake speaking t the event. In June Jackie Robert’s had a succesful fund raiser in Seattle for BNAC’s research. A newly approved IRB trial is also launching in San Diego at The Hubbard Foundation. Everyone, please continue to encourage donations for CCSVI research!

Other recent advances are the launch of CCSVI Alliance, founded by some of the original CCSVI patients.  Then all of the CCSVI experts met in New York to launch the International Society for Neurovascular Disease. There is so much happening with CCSVI that I don’t have the time to list it all. Please visit the folks on my blog roll who are doing a better job than I of reporting latest developments, and their own CCSVI stories. For now I’m going to focus on getting to know this new person that has appeared in my life…the old me!

Update: 5 months post CCSVI procedure

This is a short post to let everyone know I am doing well. Since January, I’ve been thinking I must be at the end of the shoulder pain, but it just kept lingering. Now for sure now I know it is almost over, because I’ve been doing windmills with my right arm for the last 5 days! My left shoulder still hurts, but it is close to mended too. Wednesday the pain was minimal, then Thursday afternoon my spasticity lifted and I felt so good I burst into 20 minutes of exercise. OK, it is barely exercise, just swaying to challenge my balance, calf raises, side stepping, but you have to somewhere. And I could walk without leaning on walls. It felt so great to be moving freely, the suddenness of the change was a surprise.

My physical therapist had mentioned the constant pain could release prostaglandins that might irritate the MS syndrome; after this improvement following a no-pain day, I anticipate faster MS improvements in the future. Of course Friday I leaned on my left arm too hard and activated the nerve pain again, grrrrr! Was more careful through the weekend, but energy level remained up, and Sunday Doug brought some boxes out of storage and I spent 4 hours sorting through treasures I had not seen in years. That was a big project I could not have done a week ago.

Many CCSVI events and news items occurred during March, I just put a few of the major ones in a box on my main page. It is getting beyond my ability to keep up with all the news, patient activism, and locations starting trials, scans or treatment. I was hoping for this – means the world-wide explosion of patient action is working. So more MS people can get tested and Liberated if they have blocked veins.

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