Topic: CCSVI Angioplasty was Sucessful, Pics. Inside. Get tested if your Neuro !
lymetwister
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I want to explain this again as for some this is the first time you will be reading this. CCSVI=Chronic Cerebral Spinal Venous Insufficiency.
The MS community is finding out they have this in crazy high numbers. The Dr. that discovered this did so b/c his wife had MS. Had she had Lyme or CFS, etc., then all with those Diagnosis would be getting checked. Well, since MS=Lyme, many have been getting checked out lately. Every person that has Lyme who has been checked for CCSVI has been positive that I know of, including me.
Background: The internal jugulars drain deoxygenated blood from the brain back into the circulation via venous return (the jugulars). If you have either Stenosis or Thrombosis of these veins, the blood doesn't make it back to the heart as it should where it is re-oxygenated, thus leaving stagnant blood behind in the brain. The back flow of blood can cause many of the Neuro symptoms we all have.
Progress: The MS patients have had great success with this, however many are restonosing down the road. I believe Hypercoagulation is responsbile for this and I am addressing this in my own personal case. Hypercoagulation is a well known phenomenon in Lyme, but not MS, so this could be the missing link. Just about every symptoms you can think of that overlaps MS is being alleviated by this procedure in both Lyme and MS patients.
There may be more, but I am #5 as a Lyme patient to have had this done. I can't say if I feel benefit yet, because I felt a huge Herx reaction come on immediately after my procedure and I am still trying to recover from this. I can only theorize that the Toxins that were stuck in my brain were stirred up once my Jugulars were opened up. I will be sure to keep you all updated. Please see my pictures below. You can be scanned all over the U.S. for this condition. If your in Maryland or close by and think you might want to check this out, PM me and I will give you the name of my Dr. He is absolutely the best in Maryland. Even though I do not show you my Azygos vein below, it was also disease and fixed with simple Angioplasty.
[ 05-04-2011, 10:01 PM: Message edited by: lymetwister ]
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SForsgren
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Great pictures. Thanks for sharing. Can't wait to hear how you do now. Hopefully, great improvements will follow.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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seekhelp
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Was the procedure painful Gary? How long did it take? How long did they say before you should notice some improvement?
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Hambone
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Thanks Gary. This is awesome.
Sorry for all the questions, but...
* Could this be the cause of hypoperfusion seen in Lyme patients via SPECT scans? Isn't hypoperfusion from a lack of bloodflow?
* You said you were the #5 Lyme patient to have this done. Do you know how the other 4 are after having this done?
Posts: 1142 | From South | Registered: Dec 2010
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I don't know if this has been discussed before, but the hypothesis is that this malformation is congenital. Could it be possibile that the narrowing of the arteries is caused by a bacteria such as bartonella (weakening of the arterial walls)? Lymetwister, do you also have bartonella?
Also, after becoming ill with lyme, I noticed that sometimes I could feel the blood flowing through my jugular with my hand. I don't know if this normal, but it had never happened before. When the cardiologist did an echocardiogram on me, I think they briefly checked the jugular. Would this be adequate to see if there was a narrowing?
Good luck to you. I hope that this procedure helps you. :0)
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Haley
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I am very interested in this. Please keep posting. I know one person that had this done. I believe his before and after is on youtube. The difference was amazing...... like he was a different person.
I have always felt like stuff is sort of stuck in my head if that makes sense. I do notice a difference with exercise. This is why I am always trying to get blood pumping and get oxygen to my brain.
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lymetwister
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I don't think this is congenital. The more I treated the worse I got. I think my Positive SPECT scan would correlate with this problem 100%. Understand that this is the main way blood drains from the brain back to the heart, where the blood becomes re-oxygenated from the lungs and goes back up to the brain. Room air is 21% oxygen. Mix that with all of the used oxygen (C02) and you have a bad mixture. This I would think would bring on the "Brain Damage" feeling we all have.
I think MS patients have CCSVI more than Lyme patients only b/c Lyme hasn't caught onto this yet. Dr. Zamboni that found this did so b/c his wife had MS. The MS community ran for this testing b/c of this. If his wife had Lyme, it would be the other way around.
I believe the constant Herxing is a sign of this problem and is why if you don't fit the few days a month cycle, then there is a good chance you have this.
If you feel "Molasis" in your head as I did, then I would think you should be checked out.
Dr. Zamboni found iron deposits settled at the top of these diseased veins. So why is it not plausible that Lyme toxins are sitting in a pile next to the Iron piles ?
I began to Herx immediately after the procedure with Flu like symptoms. I see some MS people stating this too, but they think it is a real Flu. They state like we do that they havn't been sick in years. The difference is we have a ton of toxins in that other pile, where they have a smaller pile from just natural die off.
I required 8mg of Versed and 500mcg of Fentanyl, but I was awake for the procedure. I had to be as you are asked to take deep breaths and hold during the procedure so the the Dr. can see better while the dye is injected. I honestly believe the high doses of meds is needed b/c nothing is working right in the brain. I think every symptom we have might be somehow linked to this when it is "Extreme" and nothing seems to help the symptom. The crazy anxiety and 2 y.o. crying we all get that seems Neurological and not typical of DSM IV criteria is probably a direct result of inflammation in the brain which becomes excessive b/c of CCSVI.
I think this is huge for us. If your close to Maryland, my Dr. is Dr. Cragi Suchin. He was the chief of IR at Sinai Hospital. Because of politics, he went out on his own. His staff is awesome and I'm trying to make him Lyme Literate. He is open to all of this.
Another big point is that MS patients restenose at hight rates, like in the 40 percent range, but they don't address Hypercoagulation like we do in Lyme. I honestly think this is the missing piece and the reason why they do re-stenose. I just had a Hypercoagulation blood panel ran and I'm real positive and will get on Boluoke after I'm done the Sq Lovenox. MS patients stop blood thinners 3 weeks after the procedure. It seems pretty simple to me.
My Dr. Crushed my valves with the Balloon b/c it's the Valves that are defective, not so much the vein itself. It sounded like what you hear when you pour milk over rice crispies. It was a creapy sound and I heard it very clearly. Valves don't become disease unless there is a causative agent such as Borellia.
I expect that once I get rid of these toxins I will report lots of relief. Right now, I feel pretty sick, which I did not feel before the procedure. No doubt in my mind it is a Herx. I had the stupid crying for the last 2 days and crazy anxiety and other weird stuff, yet my head pressure is gone and my POTS is much better. Had heart rates today in the 80's standing. Havn't seen that since prior to POTS. It makes sense ! The Deoxygentated blood is no longer in the brain. As the next few days go by and perfusion is increased, the demand for more oxygen when standing to the brain will be lessened.
In theory, this all makes sense to me 100% without a shadow of a doubt.
Medicare paid 100% of everything. I don't know about other insurances, but if you want to contact this Dr., he is at American Access in Towson Maryland. It's an outpatient center. You see him and only him. No Neurologists to shoot you down and away. No Dr.s to judge you on your symptoms. Dr. Suchin is very understanding and eager to learn about the Lyme/MS connection.
I think this is the breakthrough we've all been looking for. So, I said I am the 5th Lyme patient that I know of. The 2 that I know of that had it done are doing much better. I was number 3 that I know of. #4 was a Lyme patient that Dr. Suchin had done that I don't know anything about except that his patient is doing much better. And #5 is a good friend who just tested positive and is pre-op right now, so I can't comment on her.
Lastly, to answer the last question, Routine Doppler studies do not look at Jugular veins, but rather Carotid Arteries. In the world of Cardiology, Arteries have always been looked at as the problems with blood flow, clots, etc. This is all new, but it is huge for Chronic illness. I think most here are in agreement that MS=Lyme, so why not at least check it out.
I started a chat room at http://ccsvichat.com I told Dr. Suchin that I would be honored to have him do a Q & A session in the near future. I will do so when I fully recover, which I would expect to be real soon. I'm doing coffee enemas and other things to detox from my CCSVI repair, not Lyme treament. You do the math. :-)
Best,
Gary Engelman, BSN, RN
---edited to remove name and website of an LLMD---
[ 05-05-2011, 12:11 AM: Message edited by: Lymetoo ]
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map1131
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Wow Gary, everything makes so much sense. Thanks for the pic and simple description of what's happening.
I was super positive back in 02/03 when LLMD had me tested. I took heparin lozenge for many months because I refused to give myself a shot. I'm needle baby and can't even watch my blood being drawn after 12 yrs, gallons of blood and IV abx.
Of course I'm not close to Maryland, but doesn't mean I can't check out some MS research and studies being done at the University of Louisville. Never know, could be medical doc waited for me to be his first or 10th or 30th.
I don't have MS. I'm one of the lucky ones that has known it was lyme almost from the get go. Like yourself I couldn't improve with abx, in fact it was the opposite with 3+ yrs of them.
So thanks for sharing and keep us posted. All of my blood vessels in my breasts, upper chest, arms especially on the left have all come to the surface in the last several years. I mean large very blue/green vessels that I've found odd but it's something I keep forgetting to talk to my doc about.
I've wondered if it had to do with hypercoagulation?
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Hambone
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Thank you Gary.
I hope you start feeling better real soon!
This is truly freaking me out.
Ever since I got sick, I've had this strange sensation of sand being poured down the inside of the back of my neck. It happens maybe once a week, first thing in the morning when I wake up, but am still lying down.
Doesn't hurt...just feels creepy.
Every single doctor I've told this to looks at me like I'm from Pluto and that I must be certifiable. I've learned to shut up about it.
Did you ever have this feeling in the back of your neck?
What kind of doctor would I go to, to see about this?
I definitely have the molasses brain.
I'm actually kind of scared now.
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lymetwister
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Funny, b/c despite opening these Veins back up, I still have to deal with the Hypercoagulation stuff.
Not sure which came first, the chicken or the egg, but I'm sure the two are related, otherwise, why would these folks OFF anticoagulents restenose.
I'm adding Boluoke this morning and I hope this helps with the "Thick" blood. It pretty much has to if you read up on Boluoke. Dr. Gary Gorden sure raves about it Click Here.
Some here talk about how Boluoke will also take care of Biofilms, but I'm ok with that.
I'm still waking up with that Heavy head if you will. It's painful and uncomfortable and it seems to get better when I get up and walk around = Perfusion. When I lay down for 8 hours, the blood is not pumping so good. This might even be a reason for high resting heart rates if you think about it.
And those tender spots on the outside of the scalp. I would think those are tiny clots making it to the surface. They go away after a while b/c the body can absorb it's own clots. Otherwise, I don't think I'd even be sitting here talking about this :-) Some thing still work, which is amazing given what this infection has done to us.
Here is s snapshot of my labs:
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seekhelp
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The odd thing is none of those labs are crazy abnormal, but they are high. I'm no doctor though and have no idea what 20-40 points above normal means symptom-wise.
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Aack! Some of that sounds really familiar. Like when I'm playing with my kids and I lie down on my stomach. I feel this rush of heaviness/pressure in my face, like this tremendous amount of fluid is in my head.
Question: If I call the office, what do I say hen making the appointment. "Hi, I have Lyme disease, so I think I need an angioplasty" sounds a little cookoo! I am in Maryland, so I could try to see him.
Thank you so much for sharing. I can't believe you need angioplasty!! and I hope you continue to recover well.
Hambone - I get a similar sensation, but I always thought it was a good thing. I normally have so much pain and tension in my neck/upper back. Last summer, I was working with a nutritionist and seemed to be on an upswing. I would take a million vits/supplements and when I drank mint tea, I would get this tingling sensation down my neck and spreading into my upper back. Since it wasn't actual pain, I welcomed the feeling, and even drank tons of mint tea to try to feel it more often!
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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gary, you mentioned Azygos vein,where and what is it .i have severe vein issues that the doctors cannot quite figure out i have had many angios and veno grams because of abnormal flow.i am definately going to check him out because of vein issues.
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lymetwister
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@Garden, if you want to see the Dr. I saw, just call his office and tell him you are a Lyme patient and have very similar symptoms as I do. He now knows me well and he won't need much other information to scan you.
It's a 3 step process
1. Ultrasound of the neck with a special transducer that looks for Reflux of blood, which basically means they can see blood going back up the vein into the brain rather then down. This scan can NOT show Stenosis, but is an indicator of Stenosis.
2. Step 2 is usually done to get Insurance approval and it's an MRV scan. This is similar to an MRI that looks at the veins. I posted my pics in another post here. Just search "Lymetwister" and you should find it easilly. Dr. Suchin may skip this part if #1 is positive and got straight to #3.
3. Venous Angiogram: This is where he goes in and looks for the Stenotic areas and will Angioplasty them.
Dr. Suchin will take care of everything once you see him. i.e. he will arrange for the MRV and Rx meds you need etc. It's all done in his out patient facility.
No matter what the case, Dr. Suchin is an Awesome Dr. You deal with him Directly and the office staff deal with insurance and appointments, but Dr. Suchin makes himself available to all of his patients and to me, that is the sign of a great Dr. in addition to his skills.
@Seek, I'm not sure how much higher you would like to see my numbers before you say I have a true clotting problem. My Sheath was full of clots when removed from the Vein. The big picture is proof enough for me. I will be seeing a Hematologist on Monday with all of this information.
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BoxerMom
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I was treated for this without any improvement in my lyme symptoms but after watching the film clip I will look again at other arteries.
--- Subclavian steal syndrome can occur if there is a complete or partial blockage in the subclavian artery just prior to the take-off of the vertebral artery. When the arm supplied by the blocked subclavian artery is exercised, blood can be drawn away (i.e., "stolen") from the brain, via the vertebral artery, to supply the exercising arm. So, during arm exercise, a patient with subclavian steal syndrome can experience not only claudication of the affected arm, but also symptoms related to insufficient blood flow to the brain.
Posts: 789 | From CT, | Registered: Jun 2006
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This is very interesting and in my mind makes perfect sense. I have a friend with "MS" who had this procedure done a few weeks ago. He had mentioned to me that he had heard (by his doc) that some lyme patients are having this done. I don't know who that doc is but will ask.
Jury is still out with him as I have not heard from him in a couple of weeks other than to make sure he made it through the procedure. I offered my support as well as an ear to bend if he was so inclined but told him I wouldn't initiate a conversation about it. He will let me know when he is ready. I'm guessing very soon so I will try to give all the hopefulls a progress report.
My LLMD is in Maryland so maybe I can get in to see him either right before or after my next appt.
Thanks for the post and keep us informed on your progress
-------------------- If you play at the beach, expect to get some sand in your shorts Posts: 223 | From central pa | Registered: May 2010
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Wow, after hearing about all this and doing some research myself I'm going to get tested as well this week. Why not?? Sounds like everyone with Lyme that's testing is positive. Which really doesn't surprise me beacuse I bet most of these "MS" patients actually have lyme. They though I had MS until I found about lyme and tested for it. Something tells me this is some kind of missing link for all these never ending neuro symptoms a lot of us have. The science behind it really makes sense too. So from what ive heard all Neuro lyme patients are coming back with some type of stenosis. I'm getting tested within a week or so and will test this theory out myself here...
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MichaelTampa
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I am interested in pursuing this, Florida is a bit of a distance to Maryland where your doc is. Sounds like various tests and then blood thinners beforehand are required, so not like it could be one trip and done.
Any thoughts on how to find someone closer to Tampa to do this, who would be experienced enough at it?
Posts: 1927 | From se usa | Registered: Mar 2010
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You don't have to go to Maryland to get this done. Plenty of regular interventional radiologist do these procedures. Not all of them, but your sure to find a couple in Florida for sure.
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feelfit
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@MichaelTampa, check out dr. Bulent Arslan at Moffitt Cancer in Tampa. He has done nearly 200 procedures and is highly regarded. If you are on FB, search CCSVI Florida. There is also Ai3 in Clearwater, Dr. Jerry is doing procedures there.
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RDaywillcome
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MichaelTampa
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I have auestion regarding how the procedure actually ends up working in the end. I can see from your pictures the success in terms of 100% open. My mind can imagine two ways where this could happen.
1. The balloon procedure permanently enlarges the size of the vein. So, while the biofilm may still be stuck to the vein, the vein is wide enough to accomodate both the biofilm and the blood.
2. The balloon procedure only temporarily enlarges the size of the vein, so the gains here are a result of the biofilm being removed from this area.
If it is #1, it seems a little creepy to me to have the vein permanently stretched. If it is #2, that seems a better end result, but really signals much caution regarding the procedure to make sure that biofilm doesn't get stuck somewhere else and cause a real problem.
Anyone know more about this aspect?
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RDaywillcome
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymetwister
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Hard to say everyone. I felt a huge and I mean huge Herx right after the procedure.
I was if a ton of Toxins came shooting down my Internal Jugulars. It lasted about a week. Major flu like symptoms.
So, after this, I had like 4 good days, but I started back on my Colloidal Silver and that seemed to be what was making me feel better, b/c after 4 days back on, yet another Herx ensued.
I have a problem in my Transverse Sinus which is a bit higher up, but connected to the Internal Jugular. They said it was a clot on one report, the other said "Impeded Flow Defect". Either way, it's the same tube, if you will.
So, if there is a problem there, opening up the Internal jugular doesn't do squat if there is a clog higher up, hence maybe why I havn't gotten the benefit I expected.
Think of it like your toilets in your house. If both are clogged and you only unclog the one on the middle floor, the clog on the top floor still can get down.
I see a Vascular Neurologist on Friday from "Hopkins" Yippee or maybe Boooo, we shall see.
My Interventional Radiologist knew of this problem higher up, but couldn't address it in his office b/c it was just too high up and the outpatient setting was not safe to go higher with his balloon wire.
So, I will see and keep you all updated.
Gary
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Am wondering if your Interventional Radiologist can only detect higher up problems after having done the procedure? I'm assuming you can't detect them on ultrasound? Thanks.
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