How are you doing since treatment??

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

Re: How are you doing since treatment??

Postby HappyPoet » Thu Jan 12, 2012 8:16 am

Immediately post-procedure:
100% improvements in color vision (brightness), bilateral tinnitus, and imbalance.

Nine months post-procedure:
Doppler US shows fully patent and fast flowing IJVs.
Dr. Siskin said, "Dr. Sclafani did a great job." I agree.

Ten months post-procedure:
All improvements still holding.
Currently having first major relapse in two years.
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Re: How are you doing since treatment??

Postby Billmeik » Thu Jan 12, 2012 1:41 pm

Well I remember magoo from the early days but I wasnt really early like you. Three procedures now, first at false creek with Dr Simka nearby we found a flash at each of my jugular valves using ultrasound. So then to poland where the angio did the best it could because I said no to stents in the jugulars across the valves. So then down to synergy where I had my 2 valves removed. My GP wife says I've gotten worse since then but my self I think I was tight before and now I'm freed up so I lurch around more obviously. But got new work out gear this week and I have high hopes for it. A little muscle replacement should do wonders.
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Re: How are you doing since treatment??

Postby MegansMom » Fri Jan 13, 2012 4:59 am

I am going to post for my daughter Megan. She still has a tiny bit of denial, although since she is doing so well who could blame her?

She was treated 1 month after her MS diagnosis Sept 21, 2010. Her symptoms were:

Severe fatigue
Headache,
Blurry vision,
L'hermittes sign
Numb thighs
Cog fog
Insomnia
Heat intolerance
Slight imbalance ( caused a fall prior to diagnosis)
Facial paralysis ( bell's palsy-like) x 24 hr a month prior to TPA
MRI 2 brain lesions, 1 spinal lesion,
+ oligoclonal bodies in LP

Venogram - 1 partially blocked IJV and very severely blocked azygos. Both treated with TPA.

Immediate relief of fatigue, headaches and cog fog, vision improved to 20-10, balance normal, L'hermittes sign, insomnia. The numb thighs were weird in that the numb area got smaller and smaller over weeks until it disappeared.

The weird thing was that post procedure she had new symptoms: numb pinkies and and expressive aphasia ( going to speak the wrong word) this aphasia lasted 3 months and gradually disappeared over that time. The pinky numbness persisted.

Although she had no attacks or exascerbations her 1 year MRI had a new lesion or two. But she still opted for no drugs as she was symptom free except for the pinkies.

In Oct 2011 she added oral L'arginine in an attempt to get rid of the numb pinkies with great effect. She takes it intermittently.

Today she s completely symptom free. She works out, tries to eat right and stays mindful that she is always hydrated. She works full time, goes out dancing with friends, bowls, hikes, and is a wonderful mom to my 14 yr old grandson.

So she is about 16 months post procedure and continues to go extremely well.( except for her denial)

But that's okay with me. We will both be at the meeting in Orlando next month. Can't wait to meet everyone!

18 Month Update:
Megan continues to do well. No exascerbations or attacks. No DMDs. Works full time. No disability.

27 Month Update:
No exacerbations. Doing well. No DMDs. Works full time. No disability. Vision better than 20/20. She thinks I am the best mother on Earth. Actually the denial is finally waning.

39 Month Update:
No exacerbations. No MS symptoms at all. No DMDs. She is training for a half marathon. Works full time. Perfect vision. . No one would ever guess she has MS.
Luckily she had a very thorough IR who checked all of her major vessels well. And he was a very experienced IR. We are very lucky. If you do not know if you have CCSVI- get tested. And uf you can get treated as early as possible.
Last edited by MegansMom on Mon Dec 23, 2013 4:52 am, edited 3 times in total.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Re: How are you doing since treatment??

Postby dlb » Fri Jan 13, 2012 9:51 am

HappyPoet wrote:Currently having first major relapse in two years.


Oh Pam,
Sorry to hear you are having a relapse. Hope it is short-lived!

For myself, I feel like some of my balance, bladder, vision improvements have maybe shifted slightly for the worse in the last couple of months..... I know that I haven't been as careful about hydration and taking care of myself in the last couple of months. My senior parents were involved in a serious auto accident on Nov 9th (t-boned on my Dads side). Dad was just discharged from a Physio re-hab center 2 days ago, so it has been a VERY stressful and trying time for all of us. I feel that maybe it has had a detrimental effect on my own health, at this point in time, which is pretty depressing to admit to myself. I have not been on the site much at all either - even though I never posted too much, I used to do a lot of reading and learning. Guess it is time to shift the focus back on my own health and figure out where to go from here. I think it may be time to book for another DU to assess blood flow.....
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Re: How are you doing since treatment??

Postby Jugular » Sat Jan 14, 2012 5:33 pm

I had the procedure just over a year ago at Synergy. I had marked improvement in my right-sided motor neuron impairment within a few days. For instance, My ten-year old positive Babinski reflex in my right foot disappeared and has remained normal since. Since my procedure I have been exercising like mad (mainly weights but also cardio 4-6 days a week) with a good regime of vitamins and supplements - D, fish oil, whey protein, Daflon 500 mg and L Arginine. I've had slow and steady improvement since my procedure, much more with my leg and foot drop than with my arm and hand. I was checked recently MRV and DUS. Everything looks open and flowing.
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Re: How are you doing since treatment??

Postby munchkin » Sat Jan 14, 2012 8:24 pm

Hi Jugular

Has anyone ever scanned the veins draining your arms? My arms and hands got worse really quickly when my jugulars closed and narrowed.
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Re: How are you doing since treatment??

Postby HappyPoet » Sat Jan 14, 2012 9:41 pm

dlb wrote:
HappyPoet wrote:Currently having first major relapse in two years.
Oh Pam,
Sorry to hear you are having a relapse. Hope it is short-lived!

For myself, I feel like some of my balance, bladder, vision improvements have maybe shifted slightly for the worse in the last couple of months..... I know that I haven't been as careful about hydration and taking care of myself in the last couple of months. My senior parents were involved in a serious auto accident on Nov 9th (t-boned on my Dads side). Dad was just discharged from a Physio re-hab center 2 days ago, so it has been a VERY stressful and trying time for all of us. I feel that maybe it has had a detrimental effect on my own health, at this point in time, which is pretty depressing to admit to myself. I have not been on the site much at all either - even though I never posted too much, I used to do a lot of reading and learning. Guess it is time to shift the focus back on my own health and figure out where to go from here. I think it may be time to book for another DU to assess blood flow.....
Deb, thank you!
So sorry about your parents' accident. I'm glad your dad is doing better, and you'll now be able to concentrate on yourself. A DU sounds like the right place to start--sending hope that your veins are still flowing... please let us know the results. And thanks for the reminder about proper hydration!
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Re: How are you doing since treatment??

Postby coach » Mon Jan 16, 2012 1:25 pm

Thanks for asking Magoo about how everyone is. I had improvements in fatigue and night time trips to the bathroom. Balance did not seem to improve but blood and is still a problem. I don't know if that may be due to spinal stenosis in lumbar and cervical spine regions. Trying to get someone to look at those MRIs to see if they can help.Still have some leg pain but that may be due to bulging lumbar disc. Has anyone had improvements in MRIs? Of course I understand there isn't a direct correlation between lesion load and symptoms. Once you've been labeled you treated differently.
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Re: How are you doing since treatment??

Postby IbRiz » Tue Jan 17, 2012 7:14 am

Hi!

It has been 1,5 years since I had my procedure at Ameds in Poland. I have been sleeping inclined ever since, and I have managed to keep my improvements so far without any relapses.

Are any of you sleeping inclined? (IBT - Inclined Bed Therapy)

I think that IBT has really helped me maintain my current state - I am never sleeping on a flat bed again :-)

Christian
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Re: How are you doing since treatment??

Postby EJC » Tue Jan 17, 2012 11:47 am

We inclined our bed 2 years ago. I still end up with my feet hanging out the end of it.

Honestly I've got no idea if it helps or not, without a control how can you possibly measure the benefit?

However it's free and can do no harm.
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Re: How are you doing since treatment??

Postby DougL » Wed Jan 18, 2012 11:46 am

my partner woke me up at 5:00 this morning. said she couldn't sleep. i asked why?

"cause I'm walking like a normal"

no weekness, no numbness, no balance issues. this is 3 months post treatment (second treatment)

she was so excited she danced a little jig
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Re: How are you doing since treatment??

Postby nellie » Thu Jan 19, 2012 7:53 am

It's been 1 yr. & 2 months for me. I had a complication from the procedure so I was pretty stressed. I am SPMS & the only positive result were no more sinus issues. Actually, because I was pretty stressed the numbness got worse & my walk & balance deteriated. Since insurance has denied the procedure I haven't pursued followup but I can honestly say I don't know if a 2nd would help as I didn't get any real results from the 1st. So happy for all that did.
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Re: How are you doing since treatment??

Postby coach » Thu Jan 19, 2012 7:57 am

EJC would you be so kind as to share Emma's improvements since being treated by doctor Amir. You might have already done this and I may have missed it. I have pretty significant problems related to my MS and some other problems (spinal stenosis) but practioners only see me as someone with MS and so practioners reccommend only MS meds which at my stage (SPMS) are ineffective and pain meds which help with back pain. I guess they (practioners) are comfortable treating MS with what has been acccepted in the neurological comunity but maybe not the undferlying cause which still seems to be a mystery at this point.
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Re: How are you doing since treatment??

Postby bruce123 » Thu Jan 19, 2012 9:35 am

DougL wrote:my partner woke me up at 5:00 this morning. said she couldn't sleep. i asked why?

"cause I'm walking like a normal"

no weakness, no numbness, no balance issues. this is 3 months post treatment (second treatment)

she was so excited she danced a little jig


Hi Doug.
I'm not familiar with your story. I did a search but I didn't find anything. I am very interested in positive results after second treatments. Earlier in this thread I described my wife's situation. We would consider a second treatment if there seemed to be valid reason to hope for longer-term improvements. If we had reason to believe she would see improvements for 12 months instead of just 2 months then maybe we would do it all over again.

I'd like to hear a bit about your story if you don't mind.

Bruce.
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Re: How are you doing since treatment??

Postby EJC » Thu Jan 19, 2012 10:12 am

coach wrote:EJC would you be so kind as to share Emma's improvements since being treated by doctor Amir. You might have already done this and I may have missed it. I have pretty significant problems related to my MS and some other problems (spinal stenosis) but practioners only see me as someone with MS and so practioners reccommend only MS meds which at my stage (SPMS) are ineffective and pain meds which help with back pain. I guess they (practioners) are comfortable treating MS with what has been acccepted in the neurological comunity but maybe not the undferlying cause which still seems to be a mystery at this point.



Thread here:-

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic18706.html
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