EJC wrote:Dr S.
I follow this thread, despite not understand a reasonably large amount if it, I do try.
The fact you're here and spend the time discussing this subject in such detail with your patients and anyone else wanting to ask questions is simply outstanding, like you haven't got enough on your plate already. What I'm trying to find though is an overview of your thoughts. Not particularly just medical detail, but how you feel about where you are with CCSVI and where CCSVI is with MS patients.
Do you feel you understand CCSVI more than ever or as you've delved deeper into the subject are you still raising more questions than answers?
When you see a new patient do you feel a CCSVI procedure stands a good chance of helping them?
My wife had CCSVI treatment in Scotland in Dec 2010 and had very promising results (particularly eyesight improvements) which gradually regressed over the next 9-12 months. In Dec 2011 she had jaw realignment work in London which I'm documenting on this forum, with fantastic results.
Each treatment/procedure had a direct effect on different symptoms.
CCSVI returned warmth to my wifes hands and feet, reduced cog fog and provided an instant and substantial improvement in eyesight. Much of this regressed.
Jaw realignment eradicated debilitating neuralgia in her left arm, hand leg and foot. It also has reduced substantially the amount of fatigue she suffered from a daily "battery" life of awake hours of 6-7 hours to a near normal 12-14 hours. Rather than any sign of these regressing they are continuing to improve as time passes, to a degree that phyio and physical rehabilitation has begun to get her back on her feet and more mobile (EDSS reached 6.5 but now starting to improve).
As a layman I look at these results and see two treatments offering relief of two clear sets of symptoms. These are the questions that run through my mind.
1. Was my wife under treated for CCSVI (quite rightly at the time) as we were in the early stages of the development of the treatment two years ago?
2. Have we actually found two things my wife needed treating for but gone about it in the wrong order?
3. Is there any connection at all between skeletal misalignment/TMJ disorders and CCSVI? Or have we simply discovered my wife has two separate ailments providing symptoms currently known to medicine as MS?
4. Once treatment for My wifes TMJ problem are complete would she benefit from a further CCSVI procedure based on the initial improvements of the first procedure?
I'm not actually sure I even expect an answer, I'm typing this more to share my thoughts rather than look for something definitive. But I would really like to know where you feel you are at the moment with CCSVI, globally. In laymans terms.
drsclafani wrote:That is a great question. The answer would be very complex, and require quite a bit of thought. So a pat five line answer won"t do it. Let me sleep on this one for a while. please pose the question at the new year. I think that will be a fitting time to look back. Since i do not sleep very much, i will need that much time to formulate my reply.
As Im unsure which treatment to go for first (had a positive CCSVI scan at Glasgow 2 years ago and an appointment with Dr Amir tomorrow) I follow your threads as much as possible, therefore even without an answer from Dr S, I appreciate your thoughts. That said I too would love to hear Dr Sclafanis thoughts on the connection/possibility of CCSVI/TMJ/MS.
EJC wrote:Hello Darren,
I was having a chat with another patient of Amir's last week whilst sat in the waiting room. She was going through the same thought process.
Actually she'd been to See Dr S earlier this year and is now seeing Amir, she felt with hindsight, like us that she'd probably do the two things the other way around. Get the skeleton sorted, then if you still have issues maybe go the CCSVI route.
I was lying on bed the other night and it was then that it struck me how the two different procedures were dealing with completely separate symptoms.
I know Amir reads this thread and absorbs the vast amount of information that Dr S writes to see if it can in some way help him with what he does. I figured I may as well ask Dr S for his thoughts too.
drsclafani wrote:It is unclear whether one procedure supersedes the other. I fail to see how realignment does anything to manage a stenosis of a vein that results in venous obstruction of the inferior jugular bulb. Moreover, i fail to see how treating venous obstruction does anything for CSF obstructions at the skull base.
drsclafani wrote:hopefully i can address some of these problems tomorrow
drsclafani wrote:pelopidas wrote:I had a terrible chronic neck pain and occipital headache (in the back of my head) for the past 7-8 years.
MRI showed some mildly prolapsed cervical disk, so i thought i would live with it forever. I was having physiotherapy and i was taking pain killers almost every second day.
Then, 6 months ago (6/10/2011) i had my angioplasty procedure.
One month later i was talking to Dr Sclafani about the great improvements i already had. I mentioned that my neck pain was unexpectedly disappeared. He replied only "Ah, it was the spasm!"
I found what he meant:
this is the anatomy and the vessels of the sternocleidomastoid muscle (only the arteries here, the veins were of no importance until recently)
almost 90% of this pair of muscles has venous outflow through the jugulars
Maybe the spasm was some symptom of venous congestion of the muscles.
I am relieved of the neck pain and i can turn and flex my head so easily now.
I hope that this will last forever and so will all my other improvements.
Maybe other people have experienced the same thing.
Muscles have veins, too!
Thank you again Dr Sclafani (and this one is a special 6 months post-op thank you)!
-and thank you Cece for the image uploading advice!
glad you are a poster child for ccsvi. you are a lucky one. not everyone has such great responses. but it could not happen to a nicer woman.
a hint on sharing images on TIMS: dont use URL, use [img]type_out_url[/img]. This command will push the image directly into your email. your audience will not have to press on the link. see your image by my technique. They show directly in the post.
very interesting hypothesis regarding reduction of neck pain.what about this consideration: patients with MS often havfe very large condylar emissary veins that connect to the veins in the posterior neck. Could relieving the resistance in the IJV, reduce flow through the emissary vein and thus reduce venous congestion in the neck muscles?
EJC wrote:I follow this thread, despite not understand a reasonably large amount if it, I do try.
The fact you're here and spend the time discussing this subject in such detail with your patients and anyone else wanting to ask questions is simply outstanding, like you haven't got enough on your plate already.
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