Updates since 10/19 surgery ~ Rhonda

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

Postby magoo » Fri Dec 18, 2009 3:52 pm

Good job Sharon :)
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.
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Postby questor » Fri Dec 18, 2009 5:46 pm

magoo wrote:Did you have the bone/muscle bulge out on the affected shoulder?

Rhonda,
Yes, I have that as well. I have been getting physical therapy to treat the shoulder and neck using several exercises and stretches. My right shoulder rolls slightly down and forward due to the tight trapezius, and this in turn aggravates the tight neck muscles. I've started doing a stretch that involves holding onto a door frame as I rotate my shoulder into position (which I'm still not able to do naturally), I think in a manner similar to a movement SammyJo posted a link to recently. I think the funny shoulder position makes the shoulder blade appear to bulge upward. Anyway, my description is probably not very accurate or useful, but physical therapy is.

I'm three months out now, hopefully this will all resolve itself soon. Maybe in the fourth month?

I'm very happy for you, you've experienced so many benefits from the procedure, I'm especially amazed to hear about the migraines. I'm still taking my daily migraine preventative (verapamil). I tried to reduce the dose several weeks ago, and they started to return. Hopefully I'll have better luck when I try again at some point in the future.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
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Postby magoo » Sat Dec 19, 2009 6:26 am

Tracy, your description was pretty acurate. It does make the shoulder blade appear to bulge upward! The shoulder does add to the headaches IMO. I have been wearing a soft cervical collar around the house and it has helped me. I have zero headache when wearing it and I feel like healing is taking place faster.
Good luck with those migraines. I am so relieved to have stopped my meds.
Happy holidays to all of you!
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.
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Postby Loobie » Sat Dec 19, 2009 7:05 am

You guys seem to have the same thing as me. I was told it will probably take up to a year before it resolves as it is caused by damage to the spinal accessory nerve. The look of the shoulder blade "poking up" is due to two things. Not only is it rolled forward, as you all are aware of from the talk on here, but it also appears high since the nerve actually controls the trapezius and that, in my case, is laying down flaccid. It doesn't matter how hard I work it, I won't be able to 'build' it up until the nerve is repaired to the point that it will repair to.

So I went to a couple of months of PT and we got the atrophy fixed, then I just started trying to strengthen all the muscles around it that can help take the load off of the levator muscle (secondary muscle to the trapezius). If it's the same as me, it still will fatigue by the end of the day, especially with a lot of driving, to where it is a bit of a pain to keep your head up without support.

So my scapula still looks like it is sticking up (visible from the front) and the end of my collar bone is also sticking up. I've come a long, long way from a few months ago and if anyone would like the PT regimen I used, let me know as I detailed it out to Marie one morning. That nerve has to fix itself to the point that it's going to (I've been told I probably won't get 100% use back) so that the muscle will start doing it's job. Keeping range of motion up until then is paramount.

When you're standing in front of a mirror, hold your arm out to your side, roll your outward until your thumb is pointing away from your hip. Try and lift your arm straight up away from your body; not a heil hitler but out like a snow angel. If your shoulder rolls forward right when it's about 90 degrees out from your body, then it's the nerve thing. That's your shoulder rollling forward and compensating with other muscles since the trap. can't take the load.

I've been very successful with a group of exercises in getting my range of motion back and now strengthening all the musles around like pecs, lats and deltoids, to take the load so you don't pull out your scalene and levator muscles. They simply aren't big enough to do all the work and until I started strengthening around them, it was an every day thing where it would hurt by the end of the day pretty bad. Also one thing that really helped the pain when I had it was SalonPas patches. I'd put about two or three of them right on the end of my collar bone and on top of where my trapezius is supposed to be and they really helped. Picked them up at Walgreen's and they're cheap as hell.

So hit me up if you want my exercise reg. that is geared towards helping this out. Before I started it, I was in daily pain and now I really have to tweak it to feel any pain at all. It still looks like hell, but I'm even sleeping on that side now pain free.
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Postby Loobie » Sat Dec 19, 2009 7:16 am

Marie has started a thread called "Shoulders" and I posted my shoulder regimen on there. I just read it right after I posted the above reply!
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Postby magoo » Sat Dec 19, 2009 7:30 am

Thanks Lew!!! My shoulder rolls forward and the bulge is big when I make the move you suggested. I'll go over and read the "shoulder" thread. Mine isn't as painful as yours has been. I am glad you are feeling some improvement. :)
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.
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Postby Loobie » Sat Dec 19, 2009 8:31 am

One dead giveaway to see if you have winged scapula is this:
When you put your deodarant on and your arm is up, does it feel like something is sticking out in your armpit where it's usually just a bowl like 'pocket'? If the answer is yes, you've got the winged scapula! No fun, but I actually did my first set of military presses (straight over head lift) with only 15 pounds, but I could barely even do the motion a while ago.

The reason for all the time is that nerves take about an inch a month to heal and mine measures about 13" from where it got banged to where the end of the nerve is. Getting the EMG was the best thing I could have done to put my mind at ease since they could tell that it wasn't cut, but they did call it 'severely damaged proximal spinal accessory nerve'. Good luck and try those exercises I laid out, they really helped me.
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Postby magoo » Sat Dec 19, 2009 8:35 am

Yes, yes, yes!!! I must have a winged scapula! LOL, what's that?
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.
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Postby Sharon » Sat Dec 19, 2009 9:50 am

Rhonda look at the pictures of a winged scalpula before you come to a conclusion. Just from what you have said before, I doubt yours is this serious.
http://www.youtube.com/watch?v=HepHiQOsT-E

Will get back to you - grandkids are coming over and need to get the cookie dough ready for Christmas cookies.

Sharon
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Postby magoo » Fri Jan 22, 2010 10:51 am

I wanted to post another update:
The holidays were fantastic. Last year I was so tired and in pain that I had to go back to bed immediately after opening presents on Christmas morning. Both of my boys asked me if I was going to be able to stay up with them after we opened presents this year. I was shocked that they both remembered this detail and it broke my heart. I'm happy to report I was able to enjoy the entire day with my family!
We also went sledding. I climbed up hills in the snow all day long! It was so fun to be able to do these things again. My husband was just amazed. He said before the surgery I would have spent most of the day in the car resting. I never would have been able to climb the hills. This was quite an accomplishment for me and I'll remember that day as long as I live.
New Years Eve was fun and full of socializing and dancing. I actually made it to midnight! I haven't been able to do that in years.
I've been volunteering in my kids school, exercising, cooking, socializing, and best of all, chasing my kids!
I did have a run in with a bad cold and a nasty UTI. While I was at my doctor's office he insisted I get the H1N1 vaccine. I agreed, although I have never gotten the flu vaccines before. Unfortunately, I immediately had a worsening of my symptoms. I was really fatigued, achy, and overall I felt bad. After a week or so I talked with Dr. Dake about this. He thought the vaccine may be the culprit. He said there was another patient who had immediate worsening of their symptoms after the H1N1. I could have kicked myself for letting my GP talk me into getting the vaccine! Fortunately, after a couple of weeks I am feeling back to normal. It was really scary to slide backwards.
It has been almost 14 weeks since I had the procedure now. The improvements are beginning to feel normal now. My new normal:) The shoulder issue is 80% better. My range of motion is improved and the shoulder pain is almost gone. My neck has been a little stiff and the muscles have been twitching a bit. I find I still need to take some pain medicine at night in order to sleep well. But, I am taking nothing during the day.
Am I happy that I did this??? YES! Is my family happy??? YES!
My only wish is that everyone could have access to treatment. We need to keep pushing the CCSVI research forward. Please don't give up!
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.
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Postby TFau » Fri Jan 22, 2010 11:54 am

What a fantastic report Magoo! Congratulations and thanks!

Theresa
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Postby JoyIsMyStrength » Fri Jan 22, 2010 1:09 pm

Rhonda you are my hero!
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Postby Sharon » Fri Jan 22, 2010 1:24 pm

Oh, Rhonda!

This is such a good report from you. As I read your post, I was reflecting back on PM's we had between us when you were new to the forum. So much of your life has changed in such a short time. I am so happy for you.

Glad to hear the shoulder issue has almost resolved. My shoulder is healed and I am gaining strength in the arm.

Again :) :)
Sharon
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Postby cheerleader » Fri Jan 22, 2010 2:11 pm

Rhonda...
so GOOD to read about your family Christmas. Jeff and I agree that his energy and ability to participate in family life has been the greatest gift. I'm just so happy that you are enjoying your "new normal." I agree that the flu and viruses can be detrimental...it's got to be about the endothelium disruption and immune activation...I'm sure future research will tell us more. Keep healing, keep getting stronger and please check in and keep sharing your progress.
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby magoo » Fri Jan 22, 2010 3:29 pm

Thanks so much Theresa!!
JIMS~what a wonderful compliment!
Sharon and Cheer, Thanks in big part to you my life is so much better!
I hope we all get to meet one day.
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.
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