The road to recovery.....

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby whyRwehere » Tue May 18, 2010 5:35 am

My husband has 1 scar on his spine...the radiologist he last had an MRI done, did not see it as being an MS lesion. Despite this, every time he bends over to try to do a bit of work, he makes his issues worse...he is stiff, he has no strength, he feels buzzing, he feels unwell and needs to rest. I can't have him do anything that requires him to get low, or bend his back...it remains a mystery to us, but perhaps it is like what you have written above.
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Postby LR1234 » Tue May 18, 2010 6:11 am

Sometimes the lesions are too small for the MRI to pick up.
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Postby Cece » Tue May 18, 2010 8:33 am

Salvatore24 wrote:Also, I tend to only get when I have been lying on my stomach watching TV, with my neck bent upwards.

Since having kids, I sometimes find myself lying on my stomach to play with them, with neck bent up...it lasts all about a minute before I switch positions, there's no specific pain but it doesn't make me feel well to lie like that.

Bending, too, from a CCSVI standpoint could interrupt the assistance that gravity gives to get blood drained from our heads, couldn't it?

I do not do yoga inversions either anymore. 8)
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Postby Salvatore24 » Mon Jun 07, 2010 6:15 pm

Sorry for the delay, I didn't want to post an update only days or a week after the procedure.

It's been just over 3 weeks since the ballooning procedure and to be honest I feel pretty good, probably the best I've felt in 3 years.

Here's a run down of what my symptoms were, and if they have improved:

- Slight numbness & tingling from my waist down. Four hours later: intense burning pain, unable to walk or stand, loss of bladder/bowel function. Treated with IVIG for one week, in rehab for 1.5 months, able to walk unassisted after about 4 weeks.

There's still some numbness in my shins and feet. Most days some numbness comes and goes throughout that area. Since the procedure this isn't as regular an occurrance and not as severe when it does happen. It may be permanent nerve damage, or it may repair itself gradually over time

- Cog fog daily, rarely can I concentrate

I'm not back to 100%, but I'm actually switched on for most of the day, as opposed to switched off for most of the day. This has been around for a few years, so it might take a while to come back (if at all).

- Constant fatigue

The first few days I didn't notice anything significant, maybe a bit less fatigue, but hard to judge (had to take it really easy for a few days after the procedure). Then on the fourth day, my fatigue seemingly just vanished. I woke up early, took the dog for a jog, came home and cut the front and back lawns and did some weeding and edged the grass (used that wheel tool to cut/seperate the grass and the concrete). Then I took the dog for another jog later that night.

The gardening stuff was probably about 5-6 hours, with a short break in between for lunch. Not once during the day did I feel tired or fatigued. For the past 6 months, any type of physical activity I did eg. taking the dog for a short walk, would knock me on my ass for hours afterwards. I would need to have a nap afterwards, or if I didn't, I'd be walking around like a zombie. When I finally went to bed I was exhausted, but exhausted from a hard days work. I haven't had to take a nap during the day since the procedure.


- Dizziness/head spins while sitting, or from sitting to standing

Gone

- Numbness/tingling/pain to varying degrees in arms/legs/chest/face

I still get weird sensations occasionally, alot less though, and less severe.

- Difficulty swallowing at times, irregardless of whether I'm eating or drinking

Hasn't happened once since.

- Constant headaches (even upon waking)

No headaches since. This has been big for me, for the past 6 months I have had at least 2 headaches a week (sometimes more).

- Further hand/eye co-ordination problems

Not back to 100%, but improved somewhat

- Extreme sensitivity to heat

It's winter here, so I'll have to wait until Spring/Summer to really judge this, but having a hot shower doesn't drain me of my energy anymore.

- Hands and feet always ice cold

Gone completely. Don't get me wrong, my hands get cold if I go outside, or my feet if I walk without shoes on the tiles, but they aren't even ice cold when this happens. Returning to a warmer area clears it up completely, whereas before even after a hot shower they would only warm up a little bit.

- Blurry/altered vision at random times & durations

Still happens occasionally, though not as severe, and not for as long.

- Lhermitte’s sign (No lesions though, WTF?)

Gone.

- Balance fluctuates hourly/daily

Improved for the most part, fairly steady on my feet. It's probably the numbness in my feet that's holding me back from being a gold medal gymnast or ballet dancer :o

- Shortness of breath at times

Still happens occasionally, but not as regularly, not for as long, and not as severe.

- Unstable moods, almost bi-polar like

My moods are much improved, I actually feel like the old me again. Witty, confident, humorous, and more talkative.


Now, could all of this be placebo effect? I doubt it very much, I went in to the procedure expecting nothing at all, no improvements, nothing. For the past 6 months I have been declining almost weekly, my symptoms have just never let up in this time frame.

I'll give another update in a couple of weeks or so. Take care everyone.
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Postby ozarkcanoer » Mon Jun 07, 2010 6:25 pm

Salvatore,

Thanks for the report ! It sounds like things are going well for you. I hope everything keeps getting better and better.

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Postby mshusband » Mon Jun 07, 2010 6:31 pm

Where were you treated Salvatore24? Did I miss that?

What was your stenosis and ballooning or angio?
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Postby Salvatore24 » Mon Jun 07, 2010 7:05 pm

Thanks ozarkcanoer.

mshusband: I was treated in Australia. I'm not sure of the extent of my stenosis. At the end of the procedure when the Prof showed the before and after photos, I was still pretty out of it and was only half listening/conscious (I thought it was only local anasthetic?) But the doppler said that there was more than 50% narrowing in both jugulars. I've got a followup with him soon, I'll try to get some images or at least find out how bad my veins were.
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Postby Cece » Mon Jun 07, 2010 7:22 pm

That is a great update, glad to hear that things are going well!!
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Postby Downunder » Mon Jun 07, 2010 9:10 pm

Salvatore24 wrote:Sorry for the delay, I didn't want to post an update only days or a week after the procedure.

It's been just over 3 weeks since the ballooning procedure and to be honest I feel pretty good, probably the best I've felt in 3 years.



Actually you're doing even better as the procedure was only 2 weeks ago!!

Jennifer
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Postby Salvatore24 » Mon Jun 07, 2010 10:28 pm

Whoops, it's only been 2 weeks? I guess time goes by quick when you're not dealing with ailments and dwelling on stuff. I take it you're sewing up a storm? :)
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Postby mangio » Mon Jun 07, 2010 10:54 pm

You must be pleased with the differences your experiencing.
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Good for you

Postby hwebb » Mon Jun 07, 2010 11:23 pm

Congratulations salvatore,

you took the plunge - and it paid off big time :)

Enjoy all your new-found energy. Don't let the cold weather outside stop you from getting out and about.

Helen
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Postby sbr487 » Mon Jun 07, 2010 11:37 pm

Congratulations, Salvatore. I remember few months back aussies discussing about non availabilioty of testing and procedure. I think australia has come a long way since then ... I hope you continue to see more improvements and enjoy all those cricket matches (especially, India vs Aus :-))
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Postby smokey » Mon Jun 07, 2010 11:58 pm

Great to hear from you......sounds like you're making good progress! :lol:
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Postby Salvatore24 » Wed Jun 16, 2010 10:57 pm

A bit of an update:

- I haven't had any pain in any part of my body for the past 4-5 days. In the last 6 months, every single day something has been sore or aching.

- I haven't had any headaches in a month, I would normally get a minimum of 2-3 per week. Sorry I tell a lie, I had one small headache last week, but it went away without over the counter medication.

- No blurry vision for a month either, this also happened 2-3 times per week minimum.

- I am not getting those flare-ups where my legs get numb and stiff either, these were a daily occurrance for the past few months as well, fluctuating in severity every hour.

- Fatigue is no longer a factor, nor is brain fog.

Pretty big placebo effect if you ask me.
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