High Hopes on Pacific Coast

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

Postby CNClear » Sat Sep 26, 2009 3:23 pm

Tracy --- I am soo happy that you are feeling better!!!! :D

(no offense intended, but I cant find anything that says whether you are male or female and your name could be either... :roll: )

Also, I have good news, too!!! ALEX CALLED!!!! Now I wait for Dake's call, I FedEx'd my stuff for his perusal and Alex said it looks like the end of November for me!!! I'm going to tell her to put me on the waiting list for cancellations tho...My symptoms have been getting worse and my MRI in June showed nothing active, but a few additional lesions over the last year. So....??? (Isn't that the criteria for moving you from RRMS to Secondary? Does anybody know? I thought I heard/read that if your symptoms are getting worse but you have no active lesions...that means secondary....) I'm scared something might not 'remit' before i can get to Dake, causing damage that wont be reversible at all...

Maybe I'm just freaking myself out...thinking too much...but I'm sure you probably understand how when you don't feel good and the fatigue has really got you...well, i get depressed, of course, and then my mind starts playing the 'what if' game...gotta stop that...and just be happy that we all have this to look forward to!!

Keep on keepin' on!

Lisa, aka CNClear
RRMS dx 1983, age 50
Waiting for Dake's call!
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Postby ErikaSlovakia » Sat Sep 26, 2009 11:27 pm

CNClear wrote:Also, I have good news, too!!! ALEX CALLED!!!! Now I wait for Dake's call, I FedEx'd my stuff for his perusal and Alex said it looks like the end of November for me!!!
Keep on keepin' on!

Lisa, aka CNClear
RRMS dx 1983, age 50
Waiting for Dake's call!


Congratulations! :D
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 questor » Sun Sep 27, 2009 10:07 am

CNClear wrote:(no offense intended, but I cant find anything that says whether you are male or female and your name could be either... :roll:

CNClear,
Congrats on getting an appointment, here's hoping your experience and recovery are smooth, and lead to many good results for you.

BTW, I'm a 53 yo male (I know the name can be confusing). Looks like we were diagnosed about the same time, early to mid-80s.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Questions on where to go/

Postby rettahb » Sun Sep 27, 2009 12:37 pm

If I wanted to pursue getting radiology and then stents.Who would one call first? Interventional radiology at Stanford? Dr, Dake? Where in Buffalo NY? How would you suggest getting started?

I'm not sure I'm in the right place to ask these questions. If not could someone direct me?
thanks for any info
~rettahb
Never believe that a few caring people can't change the world. For, indeed, that's all who ever have.
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Postby bestadmom » Sun Sep 27, 2009 1:45 pm

Hi,

Welcome to the board. This is the best place to get all the info you need.

Currently Dr. Dake at Stanford is the only one doing the surgery in the US. Since the diagnostics are difficult, he's your best bet for everything.

Buffalo is only doing a diagnostic study to see if CCSVI and MS are correllated as Dr. Zamboni has found.

Michelle
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Dr. Dake

Postby rettahb » Sun Sep 27, 2009 2:03 pm

I'll google him and try to arrange an appointment. Thanks for the reply. :-)
Never believe that a few caring people can't change the world. For, indeed, that's all who ever have.
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Postby cheerleader » Sun Sep 27, 2009 6:16 pm

Tracy...
hope you're healing and getting thru the "what the hell did I just do?" phase OK. Sounds like you have good support and care. Healing days ahead.
all the best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby questor » Sun Sep 27, 2009 7:37 pm

cheerleader wrote:...hope you're healing and getting thru the "what the hell did I just do?" phase...


Thanks Cheer,
For the record, as difficult as things got, I've never regretted my decision (ok, maybe once or twice at 3am during the first week home) to move forward with this procedure. I'm pretty sure the most difficult time is behind me now and I'm truly hopeful about things to come.

All my best...

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Dreaming and CCSVI

Postby questor » Wed Sep 30, 2009 2:02 pm

It's two weeks ago today that I had the dual stent procedure done at Stanford.

I'm still relatively early in recovery, and am taking many medications at the moment, each of which comes with its own special set of side-effects, and so it is hard this early on to identify early MS symptomatic relief that I can relate specifically to the CCSVI treatment and improved blood flow.

But. one of the things Dr. Dake mentioned during my exit from Stanford is that many patients have experienced increased dreaming activity that they relate to the CCSVI procedure. For years now, I have seldom remembered my dreams on awakening, and if I do remember them, I have often felt that I am remembering someone else's dreams (no personal connection to the dream event, nor am I aware of myself as a dream participant). This was even true during the increased dreaming period associated with LDN (yes the dreams were vivid, sometimes startlingly so, but were they mine?).

Starting last week, my dream state has become very vivid and active, my nights are busy with dreams, and I am in them (as are elements from past experiences, etc).

Fascinating...

--Tracy

Coumadin Dosing History:
9/16 - 9/22
-- 5 mg/day
9/22 blood test
-- INR low (don't know the value)
9/23 - 9/28
-- 6 mg/day
9/28 blood test
-- INR 4.6
9/29 - 10/1
-- no Coumadin
10/1 blood test
-- INR 1.6
10/2 - 10/5
-- 3 mg/day
10/5 blood test
-- INR 1.4
10/6 - 10/12
-- 4mg/day
10/12 blood test
-- INR 1.4
10/13 - 10/21
-- 5 mg /day
10/19 blood test
-- INR 1.4
10/22 - 10/27
-- 6mg/day
10/26 blood test
-- INR 1.4
10/28 - 11/4
-- 7 mg/day
11/3 blood test
-- INR low (don't know the value)
11/5 - 11/8
-- 8 mg/day
Last edited by questor on Sat Nov 07, 2009 2:58 pm, edited 3 times in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby questor » Sat Oct 24, 2009 2:55 pm

My quest for healing continues.

I met with a physical therapist yesterday, after getting a referral from my GP, to address the tight trapezius/shoulder/neck problems on my right side, related to my stent procedure on 9/16/2009. I got a set of daily stretching exercises to use to treat this, and a recommendation to hold off on free weight exercise until the trapezius thing starts to resolve itself. I am also getting massage once a week to help work out the stiffness.

I am taking short daily walks to get some exercise, and to try and rebuild my stamina. I had hoped to restart 4.5mg LDN nightly to help with this, but gave this up after one night when my nighttime spasms and bladder/urethra leakage seemed to worsen as a result. I may restart soon at a 3.0mg level, haven't decided yet.

I am still only able to sleep flat on my back, and use heat packs at night to help with sleep. (As an aside, the night time spasticity I experience in my lower legs seems to be worse during the short stretches when I sleep on my side. Could the benefit I have felt so far in lower leg spasticity be a secondary effect of sleeping on my back, not the CCSVI treatment? So it goes with anecdotal evidence.)

I sincerely appreciate the hope that this whole experience has brought into my life, but my recovery has certainly been more difficult than I would have expected from reading the experience of others. I go back to Stanford for my 2-month evaluation in a few weeks, and am already starting to question what my response will be if the recommendation is for another procedure to treat new stenosis, or restenosis. I have had MS for 20+ years now, and have not experienced much significant benefit so far, particularly in the area of cognitive fog, lower body strength, and physical fatigue, my most troubling symptoms.

I think I can finally bend my neck far enough down toward my chest so that I can see well enough to begin self-cathing again at night. I've been getting up 5+ times a night to void (I use the term optimistically), and would love to get a longer night's rest.

I don't mean to cast a negative light on my decision to be stented last month, but it seems that what we really need is a progression and continuation of published scientific reports on CCSVI and its relationship to MS. Hope and anecdotal results are a good thing, but that's all they are. It might be wise for those considering this procedure to step back and truly consider what the benefit and costs (personal and otherwise) might be.

I look forward to being able to post positive results in the coming days and weeks.

And, here's a link to my CCSVI tracking post for anyone interested:

Questor's CCSVI Tracking Project Post

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby radeck » Sat Oct 24, 2009 3:43 pm

Dear Tracy, thank you for the update. Just to clarify, would you say that your new problems are mostly related to the surgery, or are there also any increased MS symptoms?

From what we've heard about the more progressed patients Zamboni has treated, it seemed like improvements in MS symptoms could only be seen after 18 months on average. That would suggest that you can keep your hopes up high.

Also, if I didn't miscount, there has only been one person so far, Lew, needing a second treatment but not for a new issue, just in a location that wasn't treated the first time, and skydog Mark having an actual new problem but no second treatment yet.

I really hope that the main hope in CCSVI treatment, to stop further progression by taking away the root cause of the problem of MS, will be fulfilled in your case. And in addition, that your body will find ways to replace the parts of its central nervous system that have been affected most by years of MS.
Last edited by radeck on Mon Feb 08, 2010 6:48 pm, edited 1 time in total.
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Postby Sharon » Sat Oct 24, 2009 5:09 pm

Hi Tracy,
Thank you for the detailed update
You wrote
sincerely appreciate the hope that this whole experience has brought into my life, but my recovery has certainly been more difficult than I would have expected from reading the experience of others.

I think that each of us have experienced our own personal recovery. Some that were not as progressed have zipped through their recovery with little to no problems - others in the same early MS stage have had some problems. Those of us who are more progressed seem to be having recovery problems. And, darn those trapezius muscles are giving a bunch of us some tight shoulders. From my experience, you are doing the right thing -- get some physio therapy - light exercise - massage - acupuncture. I had the procedure the first part of June so I am five months out. My range of motion is now at 95%(according to my therapist) - quite good considering I am also 66 years of age. I still have some weakness - I need to add 2-1/2# to the weights to get to the pre-procedure biceps curl. I am telling you all this so you know there is "light at the end of the tunnel". It is going to take some time. I hope that Dake is able to figure out a way to be less intrusive to the muscles and the nerves in the neck.

Tracy, you like so many of us who are progressed, want to be able to walk normally, play with our children and grandchildren. We may have too much damage that cannot be repaired right now. But, if we have stopped the progression-----what a blessing. At least we will know what we are dealing with every morning when we wake up.

Give this some time --- a broken bone takes how many weeks to heal? We are talking major brain healing that needs to go on -- 18 months is a short time when you have had MS for ten, twenty or thirty years. Keep your chin up - do those stretching exercises!
:)
Sharon
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Postby questor » Mon Oct 26, 2009 2:13 pm

radeck wrote:Just to clarify, would you say that your new problems are mostly related to the surgery, or are there also any increased MS symptoms?

Radeck, no new problems (except for the trapezius issue), just a worsening of the same old problems and slow recovery. I'd kind of created a mental benchmark for myself of wanting to at least recover what I had last August, I'm not there yet. Things seemed to be going well the first month...

radeck wrote:I really hope that the main hope in CCSVI treatment, to stop further progression by taking away the root cause of the problem of MS, will be fulfilled in your case. And in addition, that your body will find ways to replace the parts of its central nervous system that have been affected most by years of MS.

Point well taken. Thank you.

Sharon wrote:Give this some time --- a broken bone takes how many weeks to heal? We are talking major brain healing that needs to go on -- 18 months is a short time when you have had MS for ten, twenty or thirty years. Keep your chin up - do those stretching exercises!

Thank you Sharon, will do, and I'll work on the patience thing.

In my Weekly Progress E-Mail to Dr. Dake I wrote:Dear Dr. Dake,
It has now been almost seven weeks since I was treated for CCSVI at Stanford (9/16/2009). I started physical therapy last week for the right-side trapezius/neck problem I reported earlier. I continue to use heat and take extra strength Tylenol at night to help with sleep. The physical therapy is helping.

I am still trying to regain my physical stamina to the level it was before the procedure. I am able to take short walks daily (1/8 to 1/4 mile), but lower body weakness and physical fatigue still bother me and seem to be more troublesome than before the procedure. I still get up 5+ times nightly to empty my bladder. My walking is still inconsistent and a little unstable, and I still use a stick for any but short distances. Mental fatigue and mental cloudiness still trouble me, particularly in the afternoon and worsening into the evening.

I tried to taper down my use of Verapamil that I take daily to prevent migraines, in hope that the CCSVI procedure might have an impact, but the head pain started to increase within a few days, and I restarted taking 480mg Verapamil again nightly. The head pain has since gone away, and I will try to reduce Verapamil again in a month or so.

I continue with Monday blood checks to monitor INR. I am currently taking 6mg Coumadin nightly, but my INR is still in the 1.5 range.

I feel like I have gained little from the procedure, and am frustrated by lack of progress in recoverying my strength to its pre-procedure level. I start to crash physically and mentally nightly at about 7pm, but try to make myself stay up past 8pm. I typically wake up about 7:30am.

I am hoping for a long-term benefit of discontinued disease progression, and eventual recovery of lost function.

Thank you...

--Tracy
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2 Month Follow-Up

Postby questor » Tue Nov 10, 2009 8:53 am

I had my two month follow-up MRI/MRV and consult with Dr. Dake yesterday at Stanford. He was very pleased with the new images of my IJVs and stents, and told me I could now stop the Coumadin.

I gave him a run-down of the MS benefits I have felt so far, and I took a short follow-on Fatigue Severity Scale test which he compared with my previous exam last September (the test is very subjective, but showed about a 10% improvement). This test consists of about 30 questions concerning how fatigue and poor stamina affect daily activities.

It's very good to know that the blood-flow problem has been corrected in my case, and that I can now get on with long-term healing. My stamina is still improving, and I feel I'm very close to where I was before I had the procedure (stamina wise).

I told him that I have been getting physical therapy for several weeks now for the trapezius/shoulder problem, and he assured me that this problem would eventually resolve itself.

I still benefit from the 90% reduction or so in nighttime spasticity in my lower legs, this benefit started the first night after the stents were installed. I told him that those closest to me have commented that I seem much better cognitively.

I have been somewhat troubled by how variable my recovery has been, and have hesitated to claim any specific benefit because of this. But, certain benefits and symptomatic improvements are becoming clearer with time. I'll keep my post in the CCSVI Tracking thread updated.

Thanks to everyone on the forum, especially Cheer, for the encouragement in healing.

And now, onward...

--Tracy
Last edited by questor on Tue Nov 10, 2009 6:44 pm, edited 1 time in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
User avatar
questor
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Posts: 275
Joined: Mon May 22, 2006 3:00 pm
Location: Northern Calif Monterey Bay Area

Postby Sharon » Tue Nov 10, 2009 3:44 pm

Hi Tracy!

Good news that your stents are keeping your blood flowing back to the heart and you have no new issues.
Your wrote:
I have been somewhat troubled by how variable my recovery has been, and have hesitated to claim any specific benefit because of this. But, certain benefits and symptomatic improvements are becominging clearer with time.


I think we have all "hit" the wall during the recovery....wondering why we are not seeing improvements. Some days are better than others --- guess what? You are no different than your significant other or your family or your friends. They have bad days too! We have to continue to remind ourselves and each other that getting the stents inserted is not a miracle cure. If all of us who have had the procedure can say that in one year we have not progressed -- that would be exciting....that would be success.

Keep up the PT for the shoulder -- my shoulder is healed -- it took five months but I now have full range of motion and no pain.

Great update
Sharon
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