Magoo/Rhonda needed a second treatment!

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

Magoo/Rhonda needed a second treatment!

Postby magoo » Thu Apr 28, 2011 6:04 pm

I went to Stanford in October of 2009 and made the best decision for myself, and that was to be tested and treated for CCSVI. I believed that it could not be good for my body if I had restricted blood flow. And, my body has given me every indication that I was right.
I was treated and had amazing results. I have been following the science and contributing in small ways, because when your body has betrayed you and you find a way to gain some improvement, it is amazing. I am not claiming CCSVI is "THE" answer because I believe the scientific studies need to be completed and with time we will all understand the vascular connection to MS. It is a piece, if not the whole pie!
The fact is it helped me, but I started to lose some of my gains in the second year. I had a return of terrible headaches and right-sided pain, and with the change of seasons this year, I felt the heat intolerance returning. So, I decided to get evaluated again.
When I was initially treated we were very early in this discovery and Dr. Dake was the first and only physician looking into CCSVI in the US. I will forever be grateful for his care over the past year and a half. He is a remarkable doctor and human being. Every email question I had for the past 18 months, was answered 99% of the time, within minutes. We discussed everything and he was professional and caring. That is quite a combination. Obviously, when he fixed my severe bi-lateral jugular stenosis, my body changed. The fatigue and cog-fog lifted, and I felt strong. I have a family who watched my transformation with delight. He was supportive when I chose to evaluate my condition again, this time closer to home, with Dr. McGuckin at the Vascular Access Center.
I was amazed to find out I had quite a bit of work left to do on my veins. I had May Thurners (80% blockage), I had a 70% left renal vein blockage, I had a web and a faulty valve in my azygous which created a 70% blockage, and both of my jugulars had additional stenoses, (30% left and 40% right). All were treated with angioplasty. My stents which are in my upper jugulars were widely patent and McGuckin stated they were the best he's seen.
So, now I am left to wonder about my prior recovery when I still had so many blockages. I believe my body obviously responded well to the additional blood flow from the first treatment, but was unable to compensate for the other blockages for very long. In fact, when I was on the table with McGuckin, my pain and headaches were triggered at points during the procedure, which I shared with the good doc. Then, as quickly as they intensified, they were relieved. Dr. McGuckin spoke of this after, noting that I had no idea when he was ballooning the blockages, but that is when I complained of the pain. And, when the blockages were cleared, he stated that I told him the pain was gone. I am amazed, but not surprised, that the blockages were causing the exact pain I had been complaining about.
So, how am I now? It may be too early to tell, but I have some improvement. First, I had the most amazing dreams the first night. (I had similar dreams after my first procedure) The world looks crisper and colors are definitely brighter. (I did not have this the first time) I believe the right-sided pain and horrible headaches have lessened too, but I want to wait a while to be sure.
I've been resting and hydrating since treatment. I believe most of us will need ongoing treatment to keep our veins open. I have no problem with that because I know it makes a difference to my health. I have two wonderful doctors and I know that if I need additional help, I can get it.
I wanted to share my story and I hope it will help someone.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Advertisement

Postby CRHInv » Thu Apr 28, 2011 6:24 pm

Thank you so much for sharing your story. You are truly inspiring!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 3:00 pm
Location: Chandler, AZ

Postby WeWillBeatMS » Thu Apr 28, 2011 7:09 pm

Thanks for sharing Magoo.

WeWillBeatMS
User avatar
WeWillBeatMS
Family Elder
 
Posts: 169
Joined: Wed Feb 03, 2010 4:00 pm

Postby CureIous » Thu Apr 28, 2011 7:36 pm

Awesometastic. We can always treat a little bit more, but can never treat even a little bit less. Glad you got "fixed" in stages and the other stuff was caught.

That's the nice thing about Dr. Dake, he is not the least bit territorial. Would that the Stanford Neuros and other medical professionals had the same "whatever is best for the patient, not my practice/ego/pocketbook/status/placard-in-the-entryway-when-I-retire" attitude.

Interesting comment about the stents. Oh well, nothing to bag on about the stents here, guess they performed as expected and stayed patent. Bet that never makes the headlines....

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1204
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby pklittle » Thu Apr 28, 2011 7:52 pm

Thanks for posting your story Rhonda. It was so good to meet you when the group of us Carolinians got together to share "war stories" some months ago.
Best of luck to you! Keep us posted.
Pam
User avatar
pklittle
Family Elder
 
Posts: 341
Joined: Sun Mar 07, 2010 4:00 pm

Postby Cece » Thu Apr 28, 2011 8:48 pm

Congrats! I think another of Dake's patients received a similar comment about the stents, it makes me think he was doing something different in the way he did stents, and my best guess remains the aftercare that he gave. Kudos to him and to you and to Dr. McGuckin!
Cece
Family Elder
 
Posts: 9009
Joined: Mon Jan 04, 2010 4:00 pm

Postby ErikaSlovakia » Fri Apr 29, 2011 2:28 am

Magoo, congrats!
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
ErikaSlovakia
Family Elder
 
Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby 1eye » Fri Apr 29, 2011 7:11 am

Oh, I had no idea you were having any trouble, and I'm so glad to hear it's treated. Yay. You're one of my heroes.

It could be that one of the long-term lessons will have to be that, even though such things may cost more, and therefore be out of the question for social medicine the way we have implemented it (maybe not the Cuban way), there may be ways of improving the details of a person's treatment and recovery that can greatly improve the outcome.

I think the tendency is to try to mechanize and ritualize to try to get a large return from a large investment. However, this approach may be incompatible with and require the sacrifice of some component of every individual's health. I hope not.

Anyway, I'm very very glad you had who you did helping you and I hope to hear much more from you in the years to come.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2892
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby KikiT » Fri Apr 29, 2011 7:41 am

Thanks for sharing Magoo! It gives all a little more courage and hope that we are moving in the right direction. Wishing you the greatest improvements to come!!!

Kiki
User avatar
KikiT
Family Member
 
Posts: 55
Joined: Tue Oct 13, 2009 3:00 pm

Postby LR1234 » Fri Apr 29, 2011 9:33 am

Magoo, thanks so much for keeping us updated with your health.

I really do think MS effects all the veins due to the inflammation over time and its not just about the jugulars/azgous as you have discovered.

Fibrinogen/fibrin is probably not being broken down correctly or something which leads to stenosis all over the body and accumulates until the body can no longer compensate. (Fibrinogen can also cross the blood brain barrier)

MS is such a minefield!! I really hope you feel well and have your improvements again xx
LR1234
Family Elder
 
Posts: 1502
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby AlmostClever » Fri Apr 29, 2011 12:23 pm

Glad to hear it Magoo!

So did McGuckin say anything about the M-T or treat it? Got any images to share?

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
AlmostClever
Family Elder
 
Posts: 366
Joined: Mon Dec 21, 2009 4:00 pm
Location: Houston, TX

Postby magoo » Fri Apr 29, 2011 1:53 pm

Thank you everyone!!!!
I am waiting for my CD to come in the mail. It will be interesting to see. The MT was treated, but only with angio, so I have emailed some questions to McGuckin about this. I am a little confused as to why he didn't stent the left iliac vein.
:?
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Postby esta » Fri Apr 29, 2011 3:53 pm

yahoo magoo,
glad you just went for it, and nothing negative on stents!
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 4:00 pm
Location: Summerland. BC Canada

Postby Nunzio » Fri Apr 29, 2011 7:13 pm

magoo wrote:Thank you everyone!!!!
I am waiting for my CD to come in the mail. It will be interesting to see. The MT was treated, but only with angio, so I have emailed some questions to McGuckin about this. I am a little confused as to why he didn't stent the left iliac vein.
:?

Hi Magoo,
I like to know the answer too since I have MT too that was treated with balloon and, from what I know, it should really be stented.
Thanks
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
User avatar
Nunzio
Family Elder
 
Posts: 254
Joined: Thu Jan 14, 2010 4:00 pm
Location: South Florida

update

Postby zinamaria » Fri Apr 29, 2011 9:04 pm

Thank you so much for this very thorough update Rhonda, this is helpful for those of us who have not had the procedure yet, so we have an idea of what can happen...also, it's so exciting to see how much the research has already changed since you first went in.
Thanx for taking the time!
Are you still sometimes wearing high heels??

Z
User avatar
zinamaria
Family Elder
 
Posts: 296
Joined: Fri Dec 04, 2009 4:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service