Re:

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

Sending prayers and support

Postby Hari » Wed Jul 14, 2010 4:14 pm

[quote="eric593"]So sorry this has happened to you, LR. Such a good reminder that our veins can be finicky. Please please please feel like you can come here and share. This is YOUR SUPPORT forum too]

THANK YOU, LR, for sharing, what must be a very difficult experience to write about. You are brave and generous to share your story with this community because I feel it IS meant as much for people like you as it is for the wonder-kinds who have had great results,

I had a venoplasty 2 weeks ago of my left upper jugular vein which was 45% blocked. It was opened twice with a balloon. Other IJV was also ballooned, tho it had little blockage; azygous veins were checked and looked 'normal.'

I wasn't told to take aspirin, or anything else post surgery.

My IR doctor found many blockages in my brain veins, ''too numerous and too small' to open.

This might be why I had no improvements post-balloon treatment of my IJVs? I remain heat intolerant, more fatigued than before the procedure, still have leg and foot pain, brain fog/short term memory, etc.

I wish you the best, and pray you will find tons of support here and among all your friends and loved ones as you await the next step in your treatment.

Dx'd R/R Aug 1989 S/P since 2000
Not on any DMDs


:arrow: I wish I knew how to get the iron out of my brain :roll:
Last edited by Hari on Wed Jul 14, 2010 6:25 pm, edited 1 time in total.
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Postby 1eye » Wed Jul 14, 2010 4:55 pm

My advice would be to do as little as possible. When I was on plavix as well as aspirin, I would bruise just by looking in a mirror. Hope your thrombosis clears up. Hope you feel better. If only the other doctors and scientists would get behind this thing and help clear up these problems. I guess changing the disease model means the business model too, and we have to find some money somewhere, or we might fall between some cracks.

After they were sure there had been enough time for the artery walls to grow into the mesh, they let me forgo the plavix. But for me, the aspirin is for life.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby msgator » Wed Jul 14, 2010 6:17 pm

oh honey, so sorry to hear the news. Puts yet another kink in the life plans doesn't it. Sending you healing thoughts from across the atlantic.

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby gibbledygook » Thu Jul 15, 2010 7:54 am

jeez, LR, what a nightmare. I pray that the doctors can come up with a solution. Thank you for posting as I think many of us thought that the ballooning was far safer than stents.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Interrupted » Thu Jul 15, 2010 9:59 am

LR1234, have you tried having an "informal" (because they won't like to comment on surgery they've never done and can't do on the record) conversation with a vascular surgeon in the UK about the problem and seeking their advice? I'm sure it would be worth a private fee to talk to someone face to face about any possible options :idea:
You've probably done this already, but I was just thinking it would be my first port of call in your situation.

Reports like this are really SO important because it highlights the dangers of being swept away by the possibility of symptom relief as if it's a potential cure all in such early stages. I confess I was in the 'yes to ballooning, no to stents for me' camp but this is definite food for thought when you read about a hypothetical problem becoming a reality for someone.
I sincerely hope something can be done to help you out, very much love to you. As others have said, just get in touch if you need some diversionary chat - Jacqui xx
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Postby AnnaP » Thu Jul 15, 2010 5:59 pm

Hi LR1234

I am so sorry for what you're going through. I will keep you in my prayers as I know others will too. You will come out on top, our prayers will get you through this terrible time.

Hang in there.
hugs and kisses
Anna
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Postby sofia » Fri Jul 16, 2010 2:18 am

Sorry to hear about your problems. Vertigo issues is absolutley hell. I've had my fair share of them, and know what you are going through.
I also suffered a bit of breathingproblems after having my azygos treated. It was uncomfortable but nothing major.
Dr. Petrov has got a pretty impressive CV, and I am sure he is a very competent surgeon, and he is very experienced now with the liberation procedure. Obviously your operation was not successful, as it has collapsed again. But all in all I would think he is a good one to go with to have it all fixed again, especially if they have offered to treat you again free og charge.
I suppose they cant know from a doppeler what it is casuing no-flow, wheter it is fibrosis of the veien or a tromosis/clotting, before venogram is done. Both can happen I suppose, so let us hope it is fibrosis, so they got the option to stent.
Stay on the blood thinners, and good luck to you :-)
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby ErikaSlovakia » Tue Jul 20, 2010 8:36 am

Dear LR1234!
I follow all your posts so I am informed about all your complications :(
Thank you for informing us! Get well soon!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Trine » Tue Jul 20, 2010 9:32 am

Thanks for the update. Sending postive thoughts your way. Take care.
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Postby Wonderfulworld » Tue Jul 20, 2010 11:09 am

LR
I am so sorry to hear of the complications of your CCSVI procedure, you've been through a lot. Really good news that it's been operated on and I hope you recover well and quickly.
Please continue to update us how you're doing. It does give some pause for thought about CCSVI treatment.....I am still considering it (RRMS 12+ years but stable at the moment), and it is informative to hear of both the positive and negative outcomes. I hope that your outcome will ultimately be positive.
:wink:
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby selkie » Tue Jul 20, 2010 12:15 pm

Good to hear you were treated at home, and yes, hopefully the UK will learn more about CCSVI and progress will happen.

Do you think that the doctors should have ruled you out as a candidate for treatment because of the Lupus factor? It does seem there will be people that shouldn't have the procedure because of possible complications like you experienced, and I'm just wondering if testing techniques will help others avoid what you went thru.

Sorry, not much comfort for you, but I hope they've been able to correct the clotting problem and that you'll actually feel some improvement over time. Very best wishes to you.
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Postby pklittle » Tue Jul 20, 2010 1:23 pm

Once again, thank you for posting your status LR. I hope you heal soon. Your advice is taken seriously. I didn't have success with my treatment (yet anyway), and have been thinking "what if" scenarios, like getting checked/treated again. As bad as I feel, I'm going to wait it out.

Rest, and get well soon. :)
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Postby thornyrose76 » Tue Jul 20, 2010 7:33 pm

As I intend to get the procedure done on me, thank you for posting your experience.
What anti-clotting drugs have you been on what dose? :)
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Postby Drury » Tue Jul 20, 2010 8:07 pm

Thank you for your updates LR - so admire your courage.

Wishing you all the very best,
Drury
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Postby IHMS » Tue Jul 20, 2010 8:26 pm

So sorry to hear all this. I am awaiting my liberation from a US Clinic or Poland.Do you think it is possible the Dr`s in Bulgaria did not know the proper technique? What does your little voice think? Were you having doubts when you were in Bulgaria? I believe in CCSVI but just like all surgery,the person performing it makes a big differnce.I hope you are OK! Stay positive,you are very brave to post and I appreciate it.I have only been reading THE GOOD STUFF! glad I joined finally,I needed a reality check,and to realize how serious a procedure this is for me;a RRMS with alot of lttle issues and unable to work mostly related to fatigue.I know I have stenosis it was noted on a 2003 MRI.I was DX in 2001 and cant take any of the interfeurons! :(
<div>ihatems</div><br />
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