This would have worked to catch my left jugular restenosis that had otherwise been missed.CD wrote:I can see getting a Venogram 3 to 6 months after, depending if the patient is off the anticoagulation's or blood thinners by then, just to have a look-see into the veins.
Like a good three/six month check-up, instead of the Doppler Ultrasound.
re: footdrop - there is a single muscle, believe it or not, in your inner calf, which controls dorsiflexion, which is what you do when you raise the front part of your foot at the ankle.Cece wrote:Hugs, Vivianne. Say hi to Dr. Sclafani for me. I hope you get amazing results.
I was diagnosed with foot drop during the relapse that led to my MS diagnosis. Now, the neurologist never called it spasticity, leading to some confusion on my part: is foot drop the same as spasticity?
My foot improved several months after that relapse, but not back to baseline, and this was my leg that I'd had some issues with going back ten years before. My foot drop was still noticeable at the end of a long walk or going up the stairs or sometimes just at random. In all future neuro exams, I passed the foot drop portion of the exam. So I've called it minor, I've called it residual, I hate calling it straight-out foot drop in case it raises hopes, but it was definitely an issue for me and a pain in the ***. If there was a body part that frustrated me, it was my right foot. If I stumbled, it was my right foot. If I limped after overdoing, it was my right foot. If I was scared about my MS getting worse, it was my right foot as a reminder or a harbinger.
I had the procedure done in February, I noticed an early gait improvement just in the way it lined up better when walking, and then three months post-procedure, in May, the issues were just gone.
I expected cogfog to be gone, I expected fatigue to be gone*, and they weren't, although they were better. I did not expect my right foot issues to be gone, ever. You get used to stuff like that. It had been that way for over five years. It was definitely neurological, not vascular.
I have since done far more walking that what it would've taken to set that foot off, and nothing.
* it is too early to make the call but this week I have noticed cogfog and fatigue improvements, following my second procedure two weeks ago. Serious cogfog improvements. Fingers crossed.
Welcome back, NP....npost999 wrote:I've been away a couple weeks and was reading back...did I see correctly Cece that you had your sinus veins ballooned on this second procedure? They were not done originally correct?
Has Dr. S done this on many patients yet? If so do you know how the results are looking post-procedure?
Thanks and I hope you are doing well and keep doing great.
NP
Cece wrote:
No, while he checked the dural sinuses, it was found that my dural sinuses are healthy. No treatment was needed there. Originally I did not have this checked because it was before he was doing this as part of the standard procedure.
As far as I know, he has only found a dural sinus abnormality in one patient. It was a clot and he was able to flush it out.
Wait, I think there was another dural sinus abnormality too, where there was flow in the jugular deceptively but it was not coming from the sinuses but from some other vein. (What vein? I do not know.) This may have been the same patient.
I am doing really well. Like, shhhh, let's not talk about it too much just yet because I am doing so well I am afraid to jinx it.
Dr. Sclafani has said in his thread that he is not aware of other ccsvi doctors checking out the sinuses. He uses a smaller guidewire so it is safer and more comfortable (it is actually the guidewire for IVUS).Thanks for the info on the sinuses, if what I was told by the ultrasound tech is correct then I've got reflux in my sinuses that were not looked at originally during my procedure. I'm trying to be patient to see what happens if I see any improvements, but I'm also waiting to see what more the doctors learn before I go for a second time to check the sinuses & to see if the left IJVs will improve.
Good to hear some symptoms are not back and your doing OK. I wanted to comment on your breath control while drinking. I have noticed that I have a hard time breathing while drinking...this may have come on in the past year or so. I try to take a big drink of water when thirsty and about lose control of drinking b/c I am out of breath (I can feel it in my chest) & it feels like to me I'm underwater say in a pool running out of air and have to surface to get a big breath. I know that I used to be able to chug water, beer whatever without feeling like I was out of breath. Chug like a pitcher of beer w/ no issues, so I know this is new.Cece wrote:
* Breath control when drinking water is improved. This happened after the first procedure too and I noticed when it went away. It's such an odd small thing. I don't have to stop to breathe when I normally would have to.
It's just an observance but you describe it exactly. I have not heard any of the CCSVI docs describe it as a CCSVI symptom. But it improved after my first procedure, came back (presumably when I restenosed on one side), and improved again after the second procedure. I'd forgotten about it too enough that I was surprised when I took a drink of water and kept on drinking.npost999 wrote:Good to hear some symptoms are not back and your doing OK. I wanted to comment on your breath control while drinking. I have noticed that I have a hard time breathing while drinking...this may have come on in the past year or so. I try to take a big drink of water when thirsty and about lose control of drinking b/c I am out of breath (I can feel it in my chest) & it feels like to me I'm underwater say in a pool running out of air and have to surface to get a big breath. I know that I used to be able to chug water, beer whatever without feeling like I was out of breath. Chug like a pitcher of beer w/ no issues, so I know this is new.
Interesting that you include this with your CCSVI, has this been stated before as a symptom of CCSVI?? Or just an observance.
