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Well I have to post about my shoulder you've all heard me bitching about. With Marie's help , I finally thought it worthy of being checked out and I am going to write about it here. I was hesitant at first because I figured this would be pile on fodder, shell game for Bob to say it's not a good idea because there are some potential complications. This is a definite complication from the surgery and I'm going to put my caveats on here FIRST.

To begin, I'm totallly glad I had this done. I've been walking farther and with less pain and tingling each week since the left side has been repaired. That part has been slow, but great nonetheless. I can get so much more done at work. I have not had a heacache since the left side was repaired. Once again, allowing me to get more done and take less drugs (NSAIDS). I have a significant amount more endurance. I guess that goes hand in hand with the walking. I have walked the 1/8 mile trek to the back of our factory no less than 12 times today and usually by the trip back to my office on the first trip I start limping and my legs tingle like mad (for all the dudes, you know when you can feel every hair against your pants?). And once it's TOO far, I just can't make the trip anymore and suffer from the realization that my night at home will suck hind quarters. I don't get nearly as dizzy from ANYTHING like I used to. All these are significant improvements that have now been "in place" for a substantial period of time.

So why the gripe about the shoulder and the post? Because we all need to know this is a potential complication. Marie, Sharon and I have all had it. Mine was diagnosed today as 'Proximal spinal accessory nerve damage'. So it has a name. I impressed the shit out of the physiatrist with my well thought out 'theory' (thanks Marie! I did give you credit!). The good thing is it is not cut, nicked or scraped. This we know because everything was done inside the vein. So it was banged up or is still pinched. Another "positive" is that it still has continuity which leads them to believe it will heal over time. However that will take about 9 mos to a year. I have to go now, but will add more to this when I get home.

The big thing is that I think the smaller stents really decrease the chances of this happening and that is what he's using now. Us early birds got the big 'uns.

Thanks for giving the full story, Lew....it's really important folks know this is surgery and does come with risks. The smaller stents may have less risk, but the nerves can still be impinged in the neck. Really sorry you're dealing with bad shoulder issues. Here's what I posted a couple of days ago answering a new poster's question about complications:

Hi Hoping-
There have been complications in this procedure, and your doctor is correct to caution you. A few people (more than Lew- and maybe they can comment) have had what appears to be accessory nerve damage. This nerve comes down out of the jugular foramen and crosses the IJV between C1-2 in the cervical spine....this is right where many have stenosis blockage, and the stent is putting pressure on the nerve. This area of the neck is a tight space...and if you make room for the stent and an open IJV, there is a risk the nerve may get pushed out of the way. Marie can speak more on this, but her physiatrist has told her that in her case, the nerve is regenerating and should heal completely. My husband had shoulder pain and spasm, but no long term nerve issues. This is new territory for stenting. Venous stenting has been done for many years in other parts of the body with good patency and long term results, but there are not many folks with IJV stents.

Being on coumadin is also a risk. Read up on the blood thinner protocol. We had a beloved member here at TIMS, Holly (peekaboo) who died. She had a stoke- unrelated to her procedure-but her being on coumadin did not help. Her INR number was not very high, and it may have all been a horrible coincidence, but your doc is right about the blood thinner. I was so relieved when Jeff was done with that.

So, there are many things to think about. This is surgery, and it carries risks. We didn't know what those would be five months ago when Jeff has his stents put in. We know more now, but we still don't know the long term patency of stents in the IJV. You need to talk about this with you doctor and be fore-warned.

In my husband's case, he is very happy he did this, and the end of his fatigue, heat intolerance, better sleep, less pain and spasms is his reward for being a guinea pig. The ballooning did not work for him- his jugs needed the stents to stay open.

Hope this answers your questions-
cheer

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Lew, sorry to hear about this. It's good that you got verification from a medical professional, and that healing will come with time. And now you've got a name for it.

Is the troublesome shoulder from the side that was treated initially? Do you know what size stent was used there?

The arm/shoulder on my 9mm side is still weak in certain positions, and the back/neck muscles on that side have been the most stiff/spasmodic. I'm hoping this will resolve itself quickly once I'm able to start up an exercise regimen again, hopefully next week.

--Tracy

Cheer,
I hate to bring up bad things but was Holly's stroke definitely not related to the procedure? How was that proven?
I still think it's a great idea, but I like all the info.
All my info was mailed out Monday, they should have it tomorrow!
Thanks

This was from Holly's family as reported by Sharon-

On Sunday, Holly flew back to Arizona with her best friend. During the flight Holly fell asleep and she never woke up. Holly was immediately taken to St. Joseph's Hospital in Phoenix. The tests showed she had suffered a massive stroke. The stroke was caused by an arterial bleed in the brainstem. The MRI did not show an aneurysm. The doctors said there possibly could have been a lesion which would have caused a weakness in the artery, but they could not confirm. Holly's Coumadin levels were within the low range of 2.0 when she was tested at Stanford and at St. Joseph's. The stroke was not caused by the Coumadin; but once the bleed started, because she had Coumadin in her system, the bleed would not stop. Sunday evening the family was told that because of the extensive damage in the brainstem, Holly would not survive.

Trudi, Holly's sister wanted to make sure that we understood the stroke was not caused by the procedure at Stanford. This was confirmed by the neurologists at St. Joe's and Dr. Dake (Dr. D was with Holly in Phoenix Sunday afternoon ).

We need to be really clear about surgical risks, and thank all of the patients for their honesty in reporting how the surgery is for them...this is not just a simple procedure.
cheer

Lyon wrote:

Loobie wrote:Well I have to post about my shoulder you've all heard me bitching about. I was hesitant at first because I figured this would be pile on fodder, shell game for Bob to say it's not a good idea because there are some potential complications.

I'm on record a LOT of times for agreeing with the idea that, once someone is aware that they have cranial venous occlusions, having the operation to repair the occlusions is a considerable option.

I'm sure not going to gloat at your pain and I agree that the smaller/more pliable stents would seem to be less likely to cause the painful complication you're enduring and you've been very honest about that complication from the start.

I and people considering the operation appreciate your honesty so that they can better make an informed decision.

Bob, I hope you know I was yanking your chain calling you out like that. I figured I owed you some humor after ripping your butt last time. Subtle humor just suffers in cyberspace. I was trying to get a rise out of you, but should have been less subtle. I know you don't have malicious intent, so sorry if you thought I was singling you out. I was, but just to rib you.

So on to the rest of my post. I was doing it right after regular work hours at work, we have a major problem and if I didn't leave right then, I'd still be there and it's 3 hours later! I didn't cut and run on the team, but there were like 12 people posturing to look 'dedicated' for a 3 man job, and I just don't need to do that anymore since of my standing there, my long term career there AND they are very understanding of my situation which is huge. So on to finishing what I wanted to say.

I think EVERYONE has some of this, thus everyone talking about the neck pain. It's just that this one got 'banged' harder it seems. I think me and Marie got the worst of it, plus she had it happen on the shoulder she broke, so I must say I feel like a wuss, but we need to know. Joan is right, this is surgery and they are in your body, shit can happen. Hell, when I was at the physiatrist and we got to the fun 'needle portion' of the test (I won't bore you with specifics, look up EMG) he told me "there have been times when doing this that the (insert term here) of the lungs has been punctured. Good thing we're in a hospital if it happens 'cause you would need a chest tube if that happened". The last sentence was to put me at ease because it's rare, but there really couldn't be a less invasive procedure, but they're poking around and they are bllind to a point.

I just didn't want anyone to think that I wouldn't have done this knowing that my arm might get laid up for a while. I shouldn't say arm because I still use it almost normally. However, I can't lift anything of any mass and overhead tasks really hurt. But just as I was crying on Joan and Marie's shoulder, the pain was less the last two days. I hope it stays like that. My GP had me doing these 'neck stretches' and I think they actually harmed the situation.

So the whole thing to me is boiling down to the fact that it's raining on my recovery parade. I really feel like I could be working out fairly strenuously were it not for this. As it stands I am doing role reversal training right now. For the longest time it was only upper body. Now I'm doing leg extensions and ham curls on the Bowflex and it doesn't make me feel like I'm going to pass out when I'm done! I suppose this could be seen as improvement, but I also think it could just be that maybe the progression has stopped, and as I always say leave us in the same state for a while and we can get used to it. Maybe it's that, but either way, I'm damn glad I had this done. We're guinea pigs. The physiatrist is emailiing Dake his finding so he can have it "official" and not just from my mouth. Hopefully he will warn about it, but maybe he knows that he has that problem licked with stent size and technique. At any rate, him being aware can only help. My big deal out of all of this will be to not progress and not be taking any injectable drugs that make you feel so bad. I would kill to feel secure that I'm not progressing sans meds., but I was progressing ON them so that only makes partial sense in terms of state of mind.

I didn't like the feeling of being a guinea pig in the Tovaxin trial, but if I'm going to want to try new things and not just follow rote, it comes with the territory. So hopefully someone will read this and have a little better understanding of what COULD happen. I think us spinal acc. nerve folks are in the minority and hopefully it stays that way.

.

Hi Lew!

I am really sorry to hear that your shoulder problem has continued to give you aggravation. You and Marie have had a harder time with this than I have. As you know, I started massage and physical therapy about three weeks after surgery. I also started back to a modified exercise routine. I am now about four months out from surgery - my shoulder is much better - I can now lift my arm above my head without it yanking the shoulder up to my ear. I still have some recovery to go - the arm falls forward a bit when I lift it - the elbow should be in line with the shoulder and it isn't. I have had one session of acupuncture - will have a second session tomorrow. I could not believe the difference the first session of acupuncture made in the range of motion of my arm. While on the river boat in China, I treated myself to a Chinese massage every other day - I wanted to keep the shoulder open and moving, and it was very inexpensive. All of this has helped -- it has just taken time and patience.
You wrote:

Hopefully he will warn about it, but maybe he knows that he has that problem licked with stent size and technique. At any rate, him being aware can only help

My daughter had the procedure done on Sept 4th - she has one stent at the C-1 level - this is high up on the jugular. Dr. D. said he pi**ed off the muscles because her jugular was squished against a neck bone. She is having trouble with her shoulder. She is being proactive and started seeing my massage therapist last week. Dake told my daughter that I was the pioneer in shoulder rehab. You are correct that Dake knows the potential for shoulder and neck issues, and I think he is warning everyone especially if the stenosis is in a compromised area of the neck.
It is important that our stories be told - you have found out this procedure was not "a walk around the park." The surgery has risks - people need to know what they are.
Keep up with the physio - I am sure things are going to get better.

Sharon

Sharon,

Good to see you! I had forgotten you were in China and had thought you'd abandoned us! lol. Yeah, it sucks, but like I said, it is not screaming at me like it was the earlier part of the week. My GP, who is a DO, had me doing these neck stretches because he thought if the stent was pushing it against the foramen that we could 'stretch it out of there'. Well those really hurt and I think they really flared things up because I had a couple of really, really bad days following that. So now my physiatrist is suppposed to put me in contact with someone for some PT that I can do. He mentioned the word atrophy in there and that scared me to not be doing PT. Just the memory of earlier in the week had me really concerned. It was very painful and I was really feeling desperate since I saw no light at the end of the tunnel since it's been so long since that procedure was done (July 14th). So I awfulized imagining it just keeping on getting worse. So now that the awful pain from those few days is gone, I'm doing much better mentally. I owe Dake his update this week and it's really going to be pretty good. I'll let him know he should expect something from my physiatrist, but the report on the MS front will be positive for sure. I just wish I could get out and do more since I have the energy. My golf outing that my friends are throwing me for a fundraiser is this Sunday. I really wanted to try and hit a drive off the first tee, but I don't think that's going to happen. Not a big deal, but I thought it would have been cool to just take one swing!

Lew,
I don't know if this will help or not but check if there are any chiropractors in your area that are certified in "Active release Technique" (do an internet search on it). It's a technique where they basically dig their fingers in and manipulate and move nerves. I do have a hunch with yours it won't work, but they might know better.
It's great for some things. My doctor has used it on my drop foot to increase mobility. The biggest thing he did for me though was when I fell (yeah, no shite it happens sometimes) against a wall and tried to hold myself up with a hand on the wall, that didn't help and I ended up with my arm/shoulder bent over behind my back. I ended up with a pinched nerve which caused my arm to 'fall asleep' if I laid on it, I had to sleep in a recliner for a month. I finally went to the chro and he fixed it with one treatment. It hurts when he does it (he basically dug his fingers through my armpit and collarbone, grabbed the nerve and manipulated it!) but it was fixed right away.
Might not 'hurt' to try.

Lew
You wrote

I really wanted to try and hit a drive off the first tee, but I don't think that's going to happen. Not a big deal, but I thought it would have been cool to just take one swing!

Why not stand on the first green and try a long putt? How nice of your friends to have a fundraiser for you. Wish I could be there to join the game. I hope to get back out on the course next week. The Fall is a beautiful time to golf in Colorado.
Keep up the exercise routine on the shoulder. Did you try the Thera band exercises? These are simple to do at home or in the office and they keep the shoulder area moving.
I am going over to your blog now to see how your follow-up went. I am trying to catch up on all the TIMS news -- lots of "newbies" have joined while I was out of the country. It is great to see all this activity.
Sharon

Hey Lew, just wanted to add to your thread for folks that my situation is pretty much the same as yours, but I also documented my physiatrist appointment on my regimens thread "Marie's stents CCSVI"....

Mine is supposed to heal up in 9 months.

I want to reiterate that I have 2 high jug stents one is 8mm one is 12 and only the 12 is really painful and bad BUT --even the 8 mm showed dysfunction on the EMG

I agree that as you say EVERYBODY gets this to some degree if the stent is high in the jugs. AND it really sucks the wind out of your sails.... when it is bad you end up walking around with boo-boo face.

Hmm, my stent is pretty high up and it hasn't been a problem for me...

You're lucky!!