SammyJo goes to Stanford

[Sharon]

Sammy Jo

So glad to hear from you on the forum. You have had a tough go with the recovery but it sounds like you are improving with each day. The shoulder issue - darn, I wish there was something that could be done about this. I hope Dake is able to figure it out. Spinal accesory nerve damage can happen with whiplash or a bad slip and a fall. I did not realize how easily the nerve can be damaged until I started the research.

I hope Dake is not busy so that you can spend some time with him asking all the questions. Be sure to clarify what questions and answers can be posted on the forum

Take care - have a safe trip to Stanford. Look forward to your update.

Sharon

[CRHInv]

I am so glad to hear of your progress and that you are able to make the trip to Stanford. I can't wait to hear what you learn there. I am going back on the 21st. I wish our trips would have coincided.
Take good care!
Beth

[SandyK]

I am praying you will hear great news at the appointment. Take it easy and arrive safe!

[whyRwehere]

Sammy Jo, you are unfortunately like the ghost of Christmas future for me. I was reading about your decline in your tracking thread and it seems too familiar. Fortunately, my husband hasn't had novatrone(?)...but unfortunately I haven't found easy access to LDN here.
Anyhow, the key seems to be illness brought on by colds, UTI's, food poisoning, flu...after these the worsening is pronounced. Not to say my husband doesn't get worse slowly, but after illness, it is noticeably worse.
Strangely, his Interventional Radiologist just asked for the report of his first MRI, and was surprised by the difference to the one done recently. As we thought, the spine shows nothing now and she is flumoxed. Could it be the Antibiotics regimen my husband did for 2 years? Well, despite that, his walking is worse, sadly...
Why

[ClaireParry]

Sammy-Jo, that's wondeful news. I pray that things get even better from here and that the quality of your life improves hugely. Sending you lots of healing wishes, Claire x

[JoyIsMyStrength]

I am very glad I got to do this procedure, I'm not browsing nursing home websites anymore, and have hope that I will be able to slowly regain more functionality. And I am doing everything I can to help expand awareness of, and access to CCSVI treatment for others with vascular occlusions.

Thank you, Sammy Jo! You are an inspiration and a HERO.

[AndrewKFletcher]

Anyhow, the key seems to be illness brought on by colds, UTI's, food poisoning, flu...after these the worsening is pronounced. Not to say my husband doesn't get worse slowly, but after illness, it is noticeably worse.
Strangely, his Interventional Radiologist just asked for the report of his first MRI, and was surprised by the difference to the one done recently. As we thought, the spine shows nothing now and she is flumoxed. Could it be the Antibiotics regimen my husband did for 2 years? Well, despite that, his walking is worse, sadly...
Why

Have you reverted back to a flat bed? I ask because I.T. has been shown to cause plaques to lessen and even be removed completely on an MRI scan before and after.The lady who's scan it was has not had a relapse for 11 years using I.T.

Your husbands walking being worse is also of interest.

If you are still using I.T. we could benefit from a report on the IBT thread?

If not, we could benefit from your reasoning on this and experience after the bed went flat.

Your mentioning of relapse due to colds and illness is something I suggested might be the case in my theory on ms and posture. I suspect that immobility due to weakness and a possible increase in horizontal rest, either on the couch or on a flat bed could have a direct impact on the onset of ms symptoms.

Can you remember whether illness was accompanied by your husband resting up more, I know this sounds obvious but making a connection between posture and ms relapse may not be as obvious.

Hope this is helpful
Kind regards

Andrew

[whyRwehere]

I'm sorry Andrew, but my husband will have only been doing the raised bed thing since September...and that MRI was from the end of October, so I think a month's change in posture would not have shown such a change in plaques. To me, it seems more likely the abx use, but who knows. It could also be the BBD, but one thing is sure...it wasn't a DMD!
He is still having the head of the bed raised, although we have not done it to your specifications yet.

[leetz]

GET WELL SOON...BTW...THE MEDICINE THAT YOU POSTED ABOUT...PROKARIN...(not a good reputation)...

****get well soon****

[Stevej]

How can you get tested and treated for CCSVI, people have managed to get treatment in the US, how do you go about it and what does it cost. My wife has MS and would do almost anything to get some treatment, almost anywhere in the world!

[Stevej]

Sorry, should have said I am based in the UK!

[costumenastional]

Read the entire fprum mate. It's all in here. All questions have been answere already.

[SammyJo]

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 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.

[ozarkcanoer]

I am super happy for your improvements SammyJo. I hope you get even better as time goes by. Thank you for everything you have done to promote CCSVI.

ozarkcanoer

[thornyrose76]

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 led 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 (link) 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.

Did you at anytime have to use a wheelchair, Sammy Joe? Yes, long distances? Or not? How severe was your disability? And after the procedure, when did you begin physical therapy? What type of physical therapy program are you on? If you could let me know I would be very grateful as my doctors here I find very unhelpful at present regarding ccsvi...I hope to have t he procedure soon, God willing!