Shoulders!!!

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

Shoulders!!!

Postby mrhodes40 » Fri Dec 18, 2009 9:12 pm

We have GOT to do a thread on the shoulder issue. PLEASE post on this thread only if you have had a shoulder issue and want to say how it is for you and, if you can, also please share any therapy you have had and what works.

I had stents placed May 19 '09. I was person 2. I have a 12mm stent on the right--that stent damaged my spinal accessory nerve resulting in shoulder issues. Dr Dake is aware of this and started using smaller stents with a gentle open to try and prevent this issue. It may be true that it remains a possible side effect of high jugular stents even with these measures. It seems a few more recently treated people are having some shoulder issues so I wanted to share the little bit I have learned.

Please let me explain what shoulder issues I am talking about.

The Spinal accessory nerve--SAN from here on--travels out of the jugular foramen along with the carotid and jugular and in the same sheath. The vagus nerve is in between the jug and carotid. The SAN peels off and heads out to the trapezius, it is the nerve that tells that muscle what to do and that keeps the muscle strong.

The trapezius is a huge strong diamond shaped muscle, the top of the diamond is your head, shoulders are the sides of the diamond and the point is the top of the low back. It supports your heavy heavy head and is the main muscle that keeps the head in alignment on top of the spine. It is a big muscle. It is the main muscle in a shoulder shrug and allows that movement. The trap also supports the shoulder blades and keeps them in place. If you are in a gym and there is a bar that you pull DOWN while sitting below it, that uses the traps. As you do that the shoulder blade glides flat on your back as part of the motion because the trap stabilizes the shoulder blades.

If the trap is weak from accessory nerve damage, the head and shoulders are greatly affected. Lifting the arms is difficult and you may be unable to shrug or it may be weak. The shoulder on the affected side may droop and it can even result in a secondary issue with the thoracic outlet if the drooping is allowed to go uncorrected (sometimes they use a sling for this).

Another really miserable part is that as we live we use our arms and shoulders---so if the trap can't do it, the levator, scalenes and rhomboids step in and try to do this. These are small muscles....too small for the task so they get MISERABLE and painful. On me the area that "Spock" would grab is the spot that is so painful. This is an overuse problem of those muscles and you can develop myofascial trigger points in these muscles that can refer pain to the base of the skull, along the eye and into the head and even cause headaches.

Here is a paper on a case of adhesive capsulitis with SA nerve damage
http://ptjournal.apta.org/cgi/content/full/81/3/936

One of the important things to take away from this is that physical therapy and assessment are important.

In my case I waited for my neck to resolve about 3 months before I made an appointment to see my rehab doctor a physiatrist for assessment of what I was sure was an SAN problem. I waited because Jeff had issues with his neck that resolved at about 10 weeks--I gave it a bit more time then went on in for assessment. I was given an EMG--a nerve test --where in it was determined that my trapezius was not getting the signal from the SAN that it should in the lower 3/4 of the muscle--the nerve had regrown down the top 1/4. It was assumed that my nerve was damaged but regrowing and I have been in PT ever since a couple of times a week (we are also doing gait re-training--ugh--again)

For me it has been important not to try to overuse the shoulder until the trapezius is strong enough to do the job--those small muscles can't be "strengthened" to help out, the trick is that as the trap comes "back" it needs to be strengthened again so it can take over its normal job---it is a fine line to walk to strengthen the weak trap but not let the levator rhomboids or scalenes kick in and try to help. This is why PT is helpful. A hot towel to the neck is good to relieve the pain of the overused and painful muscles

On physiatrist recheck 3 months after the initial visit it was determined that the nerve was in fact still making its way down and the scapular winging was resolving. I am far less painful than I was, I type a lot of every day now but early on, anything that I had to lift my shoulders for like typing (you kind of float your arms up some to do it--playing the piano also does this as Alex pointed out)was terrible.

LINK to picture of winging and exercise explanation

Some of us have been able to see the top of the shoulder blade peeking up over the shoulder in the mirror from the front--Loobie for example.

All of this is meant as information to discuss with your doctor, not medical advice of course. :wink:

Please others share your exercise regimen and what worked for you on this thread so it can be a resource.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby CRHInv » Sat Dec 19, 2009 7:00 am

Thanks for starting this Marie. I have been having a lot of left shoulder pain too. I was thinking it didn't set in until about a week after the procedure. Thinking back though, I wasn't really using my arms much resting in Palo Alto. I didn't think this was procedure related since I just have one low stint, but he was messing around up high too, enough to cause discomfort that I clearly remember. No matter the cause, I would like to get it healed.
My shoulder blade seems to be in place, but I get pretty bad pain when I try to do things over my head. My range of motion is reduced also, due to pain. I am almost 6 weeks out now. I am going to start with the exercises you showed, and then get in with a doctor after the holidays.
Thanks again!
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.
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Postby Loobie » Sat Dec 19, 2009 8:15 am

I just posted a big reply to Magoo and Tracy on another thread. Marie, I'm going to cut and paste my description of the regimen I've had success with and I'll try and get the pictures posted also. Here is my shoulder regimen:

I'm glad you asked about my shoulder. I think I can see a little trap coming back actually. Not sure, but what my PT guy and I did was work on strengthening all the big muscles around the area so they would do a better job helping the levator. You go back a bit at first, but I think I'm in full recovery mode on that dude. It used to look like no matter how I moved the arm, that scapula that was winged out looked like it wasn't moving. Now it moves around, but is still sticking up in the absence of a prominent trapezius.

1 - yellow theraband (the weakest one!). Sitting on my Dr.s stool, I hook it around the bottom of my table so I can grab the ends wiith both hands and pull in an upwards and back motion like a row. This hurt like hell at the beginning in the muscles "underneath" my arm. But this is to strengthen the lats.

2 - "pull across body" with theraband anchored to the floor, then wife holding it at waist level, then hooked to the door top. Imagine a square box and you are pulling from the bottom up, across the middle, and then from the top position down. So you've made an * in the imaginary box in front of you. Using right hand, you are going from low to high across your body, fromright hip to left hip across your body, and then from right shoulder to floor across your body. Just imagine a white board in front of you. If you had a marker in your hand, the whiteboard would have first a diagonal slash, then a horizontal slash, and then another diagonal slash. You'd be left with an asterisk on the white board. You need a long piece of theraband for this and a helpful person anchoring it for you.

3 - I have a bowflex. So I do, with very little weight since too much causes it all to come back, incline bench press, but at the end of the motion, I punch it out a little further basically "rolling my scapula".

4 - Do "girl pushups" from your knees or from a standing position, countertop push ups where you are just leaning into the countertop with hands shouler width apart and pushing yourself away from the countertop. I had to start with those as I couldn't even do girl pushups at the beginning.

5 - bicep curls with low weight but try and increase over time

6 - once again having the bowflex with the pulldown bar makes this easy, but tricep curls.

7 - on the bowflex, flys - with arms fully extended out the sides and bring the hands together right out in front of you while keeping arms straight.

8 - "dump out the cup". While seated hold your arm out to your side and hold your hand like you're holding a glass of water. In a backwards motion, roll your arm over and dump the water out the back. This hurt like a motherfucker (sorry) the first few times I did it. Once again, it felt like it was pulling the muscles on the underside of my arm apart.

9 - My therapist would get a good grip on my forearm and gently start leaning back and pulling it away from my body. Arm out at 90 degrees. This was pulling all the contiguous membranes that were atrophying and the first time he did it, it hurt like crazy, and then this flush of feeling went from my shoulder out through my hand. It was awesome. My wife does this for me a couple times a week.

So anything that keeps range of motion and even a little strength building (God that's hard after so much time sedentary) of the Pecs, lats, biceps, triceps and even some lite shouler shrugging with the theraband under my feet.

Key thing is to not overdo it. I did that constantly at the beginning because I have a hard time doing anything and not trying to "build" something out of it. I had to change my mindset that until my trap. comes back, I can't do that. Maybe in the curls and that, but not in anything to do with the shoulder.


I hope this helps!
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Postby magoo » Sat Dec 19, 2009 9:46 am

Yes, I have this issue too. Mine began with headaches. Exactly as you described below:

This is an overuse problem of those muscles and you can develop myofascial trigger points in these muscles that can refer pain to the base of the skull, along the eye and into the head and even cause headaches.

Since wearing a soft cervical collar my headaches have pretty much resolved. (Only around the house, not at all times) They are minor now. But, as the headaches have gotten better, my left shoulder has gotten worse. Luckily for me it's my left, and I'm right-handed. I have a hard time lifting my arm. I have a difficult time holding things at certain angles. It is sore and prevents me from sleeping on the left side. Overall, for me it's minor. I feel it is healing. I will study the exercises you and Lew have posted and use them. Thanks!!!
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 lyndacarol » Sat Dec 19, 2009 10:03 am

Although I have had no CCSVI intervention, I hope you will let me make a suggestion here.

I have been having tightness in the shoulder and neck area recently and have looked for information to help. I think my problem stems from insulin's affect on muscles (of course!) with resultant muscle contraction. I am in the process of reading this book, Muscle Medicine by Rob DeStefano, D.C., with Bryan Kelly, M.D., and Joseph Hooper.

These guys work with the New York Giants team and seem to know their stuff.

Perhaps this book ($16 at Barnes & Noble) could offer you, your physical therapist, or your physiatrist something new to try. Good luck to us all!
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Postby Sharon » Sat Dec 19, 2009 10:42 am

Great topic, Marie and a good idea to get it all in one place. I think we have each documented in our own threads -- this will be good reference for anyone having issues.

Within a few days from the procedure, I was starting to have problems. I have two stents which have been placed end to end in my left jugular vein for a length of 3-1/2". I could not raise my left arm to shoulder height without it pulling and hurting - really, it was impossible to raise it which meant I was having nerve issues along with the muscle. The levator muscle which lies alongside the jugular vein was spasming -- due to the surrounding inflammation from the procedure. Within two weeks I was using my LMT/PT. On her recommendation and with Dake's okay, I started on a muscle relaxor. There was an immediate improvement as far as the shoulder pain. I think the muscle relaxor is what made a difference in my initial recovery.

Then I started on an easy exercise routine using the Theraband. Loobie has mentioned some of the same exercises which I used so I will not repeat.

To stretch and open my shoulders I would lay on my back on a bench with my head at the end of the bench. Place a weighted object (started at five lbs) in your hands. Stretching the arms out straight, raise the arms up and over the head and then to the back of the head where the arms are hanging with the weight. Only go as far back as comfortable. Slowly bring the straightened arms back over the head to the front -- do about five repetitions and rest and then repeat. I am now up to a 14 lb. ball. My strength trainer is now using this stretch in her class for anyone with tight shoulders.

My rehab included the continuation of my Pilates class (2x week) and my strength training (2x week). Obviously, exercises were modified until I was able to rebuild the strength. Since it was summer, I was also back out on the golf course within three weeks of the procedure. Again, it was easy does it -- I never pushed to see if I could do something.

Another therapy that I have used is acupuncture. Once I was off the Coumadin, at the suggestion of my LMT I started acupuncture. The acupuncture helped with the range of motion and to relax the muscles. I found it interesting that a needle stuck in my opposite hand would allow me to raise my arm higher and without pain. I had about three or four sessions before I was back to full range of motion. Another suggestion is to go to an acupuncture session and then go to your PT session. The ac session will release the tension in the muscles, which will help the PT to be able to work with you more efficiently.

I am now six months out from the procedure - I am pleased with the progress with my shoulder. I have full range of motion and the strength is back to pre-procedure. I am able to do all exercise routines without modifications.

One other small exercise which can be done 100's of times a day. Pull your shoulders back by squeezing the shoulder blades and hold for the count of five. Should help the tension and also improve your posture.

My daughter also has had issues with her shoulders - I will make another post for her.

Sharon
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Postby SammyJo » Sun Dec 20, 2009 2:48 pm

Here's the post I did on coping with sore shoulders at 6 weeks post-op:
http://www.thisisms.com/ftopict-9228-so ... +shoulders

Am happy to report that the past week (week 7) has seen great improvement in pain level. I can now let my arms hang down without pain. Can now lift fork w/o pain. If I type too much it comes back though, so have my keyboard in lap, as well as using the dictation software I reported on. And take lots of breaks.
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My Right Shoulder

Postby Rose2 » Sun Dec 20, 2009 11:44 pm

Hi All!
It is my right shoulder, and I only had work done on the right.
It didn't bother me until I was in the hospital with the Coumadin fiasco for 10 days, and I just wrote it off to laying on it for so long.

When it got worse I called Dr. Dake and he was upset I had not called earlier but I really didn't think about it as I had so many other issues to deal with.
So I have had a few PT appts and the exercises help.
I try to use my right arm as much as possible and it is true for me also, that overuse will bring me back to Square One. So it is a difficult, fine line to follow.
I have times during the day when I want to grab the Tylenol, but think twice with the Plavix, baby aspirin and my stomach issues.
I forgot missed my 2 PT appts last week because I found out my son is going to have TWINS!!!
So, I know I have to get myself in shape to help!!
Gawd, I am so joyous to have my life back after CCSVI and have babies due that I forget to work my shoulder.
TWINS!!!!!!!!!!!!!!!!!!
I find myself holding my right forearm with my left while walking, like a sling, but PT said that is the worst. Keep it moving. So I am trying.
Sorry so long and not specific. TWINS!!!!!!!!!!!!!!
Thanks, Rose ;)))))))))))
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Postby Katie41 » Mon Dec 21, 2009 12:46 am

Congratulations, Rose2!! Lots to look forward to. Have to get that shoulder in shape to hold those precious babies, or maybe they will help you get it totally back in shape :D
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Postby Sharon » Mon Dec 21, 2009 7:37 am

Rose,

Sounds to me like you have some work to do before those twins arrive :)
Congratulations!

The exercises are so important to keep doing on a daily or even a twice daily basis. Place a sticky note on your bathroom mirror to remind you to do some shoulder shrugs or this exercise - think about dropping your shoulders down and pulling your shoulder blades back and together. Be sure to engage the abdominals - this will help to support the back.

And, do not forget the PT

Sharon
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Postby Sharon » Mon Dec 21, 2009 9:05 am

My daughter has also had shoulder issues. Her stent is high at the C-1 vertebral.
Within a few days of surgery, the shoulder became weak and she was unable to lift her arm above her head. Her shoulder was also drooping - probably 1-2 inches. She started therapy with my LMT/PT within two weeks of the surgery. Also, used muscle relaxors to help ease the spasming.
My daughter's physical condition prior to surgery was good - she exercised on a daily basis and was in a formal body pump class. Strength in her shoulders and arms was good. Dake told her to continue with her exercise program, but to modify. The weight bar was not to be on her shoulders.
She is now 3-1/2 out from surgery. The shoulder pain has decreased significantly and the shoulder droop has also decreased to some extent. The evenings are the worst. Her shoulder curves in to the front which is caused by the pectoral muscles being stronger than the romboids.
Daily activities tend to use the pectoral muscles more. Anyone who sits at a computer for a length of time is going to suffer the negative effects of continual engaged pectorals. People tend to get shorter muscles from working keyboards - this in turn means a tighter chest and weak back muscles. This then becomes a postural problem - the rounding of the shoulders. This can lead to a decreased range of motion in the shoulders.
Think of working the muscles in pairs - equal amounts of exercise with the opposing muscle groups. Be conscious of pulling your shoulder blades back and together - visualize trying to hold a pencil between the blades. You need to keep the abdominals engaged in order to support the back. Another suggestion is to place a lightweight bar or stick on your shoulders. Hands are gripping bar in alignment with the shoulder cap - fingers are facing forward. This forces the shoulder blades to go back which in turn is stretching and lengthening the pectoral muscles.

Marie has posted about the spinal accessory nerve SAN and its relationship to the weakening of the shoulder muscles, mainly the trapezius. It is sort of like a game of dominoes - the damaged SAN weakens the trapezius. There are three muscles groups that have to cooperate for the shoulder to be healthy - the romboids, the serratus anterior and the trapezius (upper fibers). If any one of the three muscles is too strong, too weak, too loose or too tight, you are going to have shoulder problems. These three muscles have to all cooperate in order for the shoulder to be healthy. If you’re a deskjockey, chances are your rhomboids, lower trapezius, and serratus anterior are weak and your upper trapezius is strong.
From http://www.floota.com/RhomboidStretch.html

Here is a concise summary about the SAN.

Accessory nerve
From Wikipedia, the free encyclopedia
Nerve: Accessory nerve

Plan of upper portions of glossopharyngeal, vagus, and accessory nerves.

In anatomy, the accessory nerve is a nerve that controls specific muscles of the neck. As a part of it was formerly believed to originate in the brain, it is considered a cranial nerve. Based on its location relative to other such nerves, it is designated the eleventh of twelve cranial nerves, and is thus abbreviated CN XI. Although anatomists typically refer to the accessory nerve in singular, there are in reality two accessory nerves, one on each side of the body.

Traditional descriptions of the accessory nerve divide it into two parts: a spinal part and a cranial part.[1] But because the cranial component rapidly joins the vagus nerve and serves the same function as other vagal nerve fibers, modern descriptions often consider the cranial component part of the vagus nerve and not part of the accessory nerve proper.[2] Thus in contemporary discussions of the accessory nerve, the common practice is to dismiss the cranial part altogether, referring to the accessory nerve specifically as the spinal accessory nerve.

The spinal accessory nerve provides motor innervation from the central nervous system to two muscles of the neck: the sternocleidomastoid muscle and the trapezius muscle. The sternocleidomastoid muscle tilts and rotates the head, while the trapezius muscle has several actions on the scapula, including shoulder elevation and adduction of the scapula.

Range of motion and strength testing of the neck and shoulders can be measured during a neurological examination to assess function of the spinal accessory nerve. Limited range of motion or poor muscle strength are suggestive of damage to the spinal accessory nerve, which can result from a variety of causes. Injury to the spinal accessory nerve is most commonly caused by medical procedures that involve the head and neck


In summary, I think the CCSVI post-op recovery plan needs to include information about PT for the shoulder issues. I know that Dake will write a script for PT if you cannot get it from another doctor. AND, we are our own worse enemy -- we get home and immediately get on our computers and start updating our stories on TIMS. I know that Dake has warned people about spending too much computer time because members have reported this on their posts. The recovery takes time -- Permanent damage to the SAN is most noted when there has been a dissection of the neck. Hopefully, since our procedures were not an invasive surgery of the neck, time will heal.

Sharon
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Postby skydog » Mon Dec 21, 2009 10:13 am

Marie, Lew, Sharon, Thank you for a very timely post on the shoulder issues. I was not fully aware of to what extent the muscle/nerve interactions could have with regards to headache. Since my shoulder left side where the 12x30 mm stent was placed has not been unusably painful just stiff with just a tad of shoulder drop and forward curving. I thought Lucky me! No pain! Well I seem to have the headache developing from the base of the skull, not that painful just lightly sore and tight. Now up higher is another story which I had yet to figure out. Sharp shooting pains on both sides of my head above the ears. Usually just a few times a day but last night every waking moment. Needless to say I did not sleep much. I was trying to tie this in with eye strain from reading more than usual. Hopping that it is a SAN issue that I can over come with PT. Just scheduled PT for the drop foot starting after the first of the year so very timely and will be discuss the shoulder issue with the PT staff at our local hospital. Incidentally they are very interested in CCSVI This county seems to be the highest per ca pita for MS in this state and there is a small study as to why being funded by NMSS. Cheers, Mark
Last edited by skydog on Mon Dec 21, 2009 11:49 am, edited 1 time in total.
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Postby Sharon » Mon Dec 21, 2009 10:27 am

Mark -

Sharp shooting pains on both sides of my head above the ears. Usually just a few times a day but last night every waking moment. Needless to say I did not sleep much.


Send an email to Dake -- keep him informed.

I am going to acupuncture this morning - a "retuning" on the shoulder and another shot at the foot drop. I will keep you updated on the foot drop -- technician was not sure if it would work --we shall see. :roll:

Sharon
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Postby skydog » Mon Dec 21, 2009 11:52 am

Will do... Fingers crossed for you on the AP foot drop. Cheers, Mark
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Postby Loobie » Tue Dec 22, 2009 6:27 am

I think I may be REALLY getting somewhere. Well I increased the weight on every exercise you see on here and kept my fingers crossed. Every other time I would increase, it would just 'pull' something and I'd have to miss a few days. I increased last night and did great. I actually then finished up with some shoulder shrugs with weight! Then I did 20 'guy' pushups. Those would have ripped my shoulder apart about a month ago.

So I think all the PT'ing is working. My shoulder still looks like hell (everything sticking out and stuff) but I got NO pain from doing more weight and even throwing a few extras in there. Very happy day!
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