[momzpeachy]

Hi everyone

I'm sorry for not getting back to you guys sooner. I really appreciate all of your concerns. Every time I get down and have trouble getting myself back up I think of all my friends on here. I have been so frustrated and upset with life. I have had some new events take place. Things are a little bit better at home and everyone calmed down a bit. We are all under a great deal of stress. Mom isn't who she used to be and needs a great deal of help with many things. Our bills are piling up and I have been spending time trying to make payment arrangements with everyone we owe. It totally sucks!

Anyways, I have some new problems with this wonderful TOS. I officially have it on the left side now and it's bothering me a great deal. I can't lift my left arm up anymore and I wake up in the night with it tingling and numb. Usually I wake up from both hands tingling and numb. I also have a lot of pain on the left side... same area as the right. I saw the pain management doctor last week and she said I have the same thing going on the left... also the PT is quite concerned because he sees it as well. I'm even at the point where he can't do much with me without causing a great deal of pain. So now we have that to deal with along with problems again on the right side. I saw the PT yesterday and he caused a major flare up on the right side in the shoulder area. I have been complaining of extreme scapular pain... pain all around the shoulder right back to the shoulder blade. It was like this before the surgery and has not gotten better. He is concerned because we can't get my arm to move in any direction but one without it hurting. The only position that is pain-free for me is sitting straight up or with pillows behind me and under my arms. Of course I can't spend every day all day in that position. He moved my arm in a couple ways and I just cried in pain. He knew something was really wrong when I was crying. I left there in so much pain. He had me do a few other things as well which causes some concern. He had me try a chain tuck exercise. WHEN I LOWER MY CHIN TO MY CHEST, I HAVE A SHOOTING ZAP DOWN MY LEFT LEG INTO MY FOOT. IT'S LIKE WHEN YOUR FOOT IS ASLEEP AND HURTS CAUSE IT TINGLES SO BAD! It's crazy because it happened instantly. The second I lower my chin it shoots right down my leg into my foot. When I raised my Chin back up it goes away. We tried it a couple of times and it kept doing the same thing. He had a very concerned look on his face. Does anyone know what this means? I asked him what this meant but he said he didn't know. He immediately asked for the number of my pain management doctor. He said he wanted to call her immediately and speak to her in regards to these things going on. He definitely feels at minimum that I will need an injection into the scapular area to calm the muscle. He is concerned because there is a major nerve that runs in that area from the rotator cuff. I have total restriction of moving my shoulder at this point and it shouldn't be like that post up (over 2 months now). I just cried. I am tired of this! I don't want any more injections! I don't even know if I can tolerate it. I had a bad reaction to them before. My PT then spoke to the pain management doctor and now she wants to see me Friday to discuss options.

I'm ready to give up. I don't know where I'm headed at this point but I will keep you posted. Where do I go from here? It looks as though my summer is not going to be too exciting.

I have to go get a shower but I will talk to you guys later. Have a great day!

[momzpeachy]

I QUIT!

II am having a total breakdown! I can't do this anymore! I have all the same problems I had before and more! I keep dropping things. I just silled an entire container of M&M's all over! I tried to put it down and dropped it and of course we have hard wood floors so they went EVERYWHERE! I just sat and cried! They are under the furniture ...everywhere. I tried to clean some of it up and ended up yanking my arm in some funky direction that hurt like heck! Now I'm a mess.

Also, my thumb on my right hand is killing me! My left one also hurts but not quite as bad. I had this before my surgery also. It came and went. I had pain in my thumbs and some of my fingers and don't know why. It's just not fair! None of it! I hate it! I want the old me back! Dang it. I'm tired.

AAAAAAAAHHHHHHHHHHHHH! UGH!

[Dolfinz]

Hi Momz...

I am so sorry you are having a shitty day.. mine was Easter Sunday ! I tired to reach over and get the salt and it fell out of my hands and smashed my plate: food and all went everywhere.. I just cried and said that was it !

Boy.. you left side sounds like my left side frozen shoulder ! And it is PAINFULL ! It hurt just if I turned the wrong way and the thumb thing.. my left thumb (ever since I got frozen shoulder) has been hurting like crazy and the blood vessel pops up alot !

Hang in there tho.. This week my shoulder finally feels like it is loosening up a bit.. so there is hope and a light at the end of the tunnel. I have had to learn how to not get upset because it makes the pain worse and I have had to try and not let things stress me out. And I learned how to ask for help from my BF.

I'm feeling ya girl ! Hang in there tho it will get better.

Hugs,

Dolfinz

[olecyn]

I hear and totally feel your pain and frustration.
I went through the same anger when my symptoms returned 2 fold after my surgery.

I'm not sure what to suggest...except to slow down with the upper body and focus on YOU.
I can only go by what has helped me.
Physically its important to calm the nerves down, watch and work on posture modalities.

Your traps are in pain due to the laxicity of the muscles attached to the scalene. In my adventures with my miracle PT doc, Dr. collins and anatomy books the scalenes are attached to everything that has caused the TOS. The pecs, the BP, all the sensory and motor nerves, the subscapularus muscle. You name its ALL attached. Its about calming the nervous system down and finding a balance.

Are you seeing Dr. Togut? I understand he's a marvelous understanding doc of TOS.

As for the emotional side, its difficult to say the least
Can I suggest what helps me?
quiet, calming, guided imagery, hypnosis and tapes, laying on the floor to take the gravity off; it opens up the thoracic area to relieve the pain and allow the circulation flow. "We" have a complete life style change and it takes our brain to catch up to what we can actually do.

Just know, you are NOT alone in this god awful condition we didn't ask for.
We are here for you.
Cyndy

[johannakat]

Momz- I am sorry i don't have much time to write just now, but I am thinking of you.

Olecyn is right, you must try to relax...once the nerves are fired up it can take a long time to get them calm.

I think the chin tuck exercise is a way to measure if your abiltiy to stretch (or not) is from nerve compression or muscle tightness... i have posted about this page before, and reading about the general category of neurodynamics might be a place to start.

slump test

I will also pull up an old thread i referenced this test in.


take care.

[olecyn]

THINKING OF YOU!!

I KNOW THIS ISNT EASY FOR YOU...
TOS isnt any easy dragon to tame
However, there are many things we can do to relax the muscles pressing on the damaged/compressed nerves and healing.

Yes, Johanna is correct
1. Baby nods for the spinal cord and cervical
2. turning head side to side fluidly before you feel the stretch
3. Arm mobility up and down side to side, slowly, lightly, calmly
4. Invest in the Edgelow Protocol for nerve entrapments. No need for doc perscription. Its a daily ritual 24/7 and does work
5. Belly breathe. Imagine yourself in the cool ocean moving about like a dolphin or mermaid

DO ALL THES LAYING ON THE FLOOR TO TAKE THE GRAVITY OFF.

Your job in life is now your health. It does become easier to adapt to changes and focusing solely on you. It's taken me 8 years and I fight with my brain daily thinking I can still do everything I used to do. Pick your battles. YOUR ARE NOW #1. Not your hubby, not your kids, not the dirty house, OR laundry. You now become first.

The stress of all your bills piling up and paper work is another extreme stressor. I know!

Again, lay on the floor and visualize the calmness and tackle one item at a time. Make a list of things to do TO CLEAR YOUR STRESSORS. Enlist friends and family to help around the house, the household management organization, helping grocery shop, have them come over and and "clean house". Rid yourself of unwanted items. SPRING CLEAN your mind and life. When someone descides to have a garage sale I betcha there is $$$ to make. People are willing to help. We all just have to remember to ask.
CYNDY

[thursday]

Momz- I feel for you!! You're not alone if you have people thinkin about you, ok?
Cyndy had some great suggestions and I would like to add something specific to it. I have the Edgelow Protocol kit and had that type of PT, my threapist made me a "home neck traction" thing-a-majig and I love to use it and listen to a meditation CD I got from the library.
The traction device is simply a longish hand towel, a theraband, tape and rope. First you get someone to help you loop the hand towel from the base of your neck to the top od your head- almost like a unicorn :P. Tie the towel into place up there then tape around the tie just to make sure its secure. Next, connect the theraband to the towel loop so you have a chain. Then, do the same with a rope, connecting it to the theraband.
How it all comes together:
The rope end goes on a door handle. Put your head in the towel end, with it around the base of your neck and the tied end close to your forehead/ hairline (think unicorn haha) then you sit down close to the door and slowly lay down. Scootching away from the door on your back until the chain gets taut and you begin to feel a pull through your neck. \
You can move away as much as you want. Also if your arms are too sensitive to fall to your sides, you can use a belt to loosely bind them in a folded arm, yet relaxed position across your belly. I listen to Jack Kornfield's Meditation for Beginners Disc 1 because it talks about pain a little bit.
The pull for me is such a relief. I feel my neck elongate and the feeling of compression goes away. My PT said its ok to do this for as long as you want too! I swear it is the best active thing I've done for discomfort throughout my TOS/ RSI experience and I recommend it wholeheartedly
If this sounds like something you'd like to try and my explanation was too hazy, let me know. I'd be glad to post a picture of the traction thing and what it looks like in use.
take care & hope you have a better week!!

Originally Posted by olecyn

THINKING OF YOU!!

I KNOW THIS ISNT EASY FOR YOU...
TOS isnt any easy dragon to tame
However, there are many things we can do to relax the muscles pressing on the damaged/compressed nerves and healing.

Yes, Johanna is correct
1. Baby nods for the spinal cord and cervical
2. turning head side to side fluidly before you feel the stretch
3. Arm mobility up and down side to side, slowly, lightly, calmly
4. Invest in the Edgelow Protocol for nerve entrapments. No need for doc perscription. Its a daily ritual 24/7 and does work
5. Belly breathe. Imagine yourself in the cool ocean moving about like a dolphin or mermaid

DO ALL THES LAYING ON THE FLOOR TO TAKE THE GRAVITY OFF.

Your job in life is now your health. It does become easier to adapt to changes and focusing solely on you. It's taken me 8 years and I fight with my brain daily thinking I can still do everything I used to do. Pick your battles. YOUR ARE NOW #1. Not your hubby, not your kids, not the dirty house, OR laundry. You now become first.

The stress of all your bills piling up and paper work is another extreme stressor. I know!

Again, lay on the floor and visualize the calmness and tackle one item at a time. Make a list of things to do TO CLEAR YOUR STRESSORS. Enlist friends and family to help around the house, the household management organization, helping grocery shop, have them come over and and "clean house". Rid yourself of unwanted items. SPRING CLEAN your mind and life. When someone descides to have a garage sale I betcha there is $$$ to make. People are willing to help. We all just have to remember to ask.
CYNDY

[olecyn]

O yeah, traction is incredibly beneficial.
Have your PT do Occipital pressure & pull.
It feels soooo sooo good and relieves the pressure on your spine and cervical muscles.
It helps release the darn headaches also.

Hope we are helping, a little?

[astern]

MMMmmmm traction. I LOVE IT!

One other thing I can add from my Feldenkrais sessions, is to lie down (on bed/couch/comfey floor with head on a pillow) and put your feet up on the wall, with pillows under your knees for support. It's like being in a sitting position only horizontally. Feel your feet pressing on the wall supporting you. It eases tension on the brachial plexus. Give it 30 min or so and you may get some relief.

Oh momz, I'm so sorry you are having such frustration. The M&M's all over - oh my. If it makes you feel any better, I get frustrated to tears when I have to hold more than 2 things at a time. Like going to or coming from the car. If I have to hold keys, cell and lets say... some mail... I drop at least 2 things on the way. It's like my hands aren't talking to my brain so my brain forgets their there! Have broken so many glasses, I stopped using them. Only plastic bottles and HEAVY coffee cups (half-full).

sucks, doesn't it?

But we're ALL in the same boat and we're ALL together!

[momzpeachy]

Thanks for your replies and I have been trying just about everything I can to relax. It's not working! I knew on Tuesday that things were bad. I could tell by the look on my PT's face that something was wrong. I also hurt so bad!

I saw the pain management doctor this morning the news is not good. The exam did not go to well. Again I cried in pain. She lifted my left leg and that shot the pain through the roof! Then with my leg up she lifted up on my foot and OH MY! I couldn't handle it! I could taste fire in my mouth! Then she kept touching and pressing in areas around the plexus and also the spine which just kept making it worse. She was also pressing on the left side in the plexus area and that wasn't too good. It's basically confirming TOS on the left side. But we have a really big issue going on with the nerves. There is severe nerve compression or nerve damage going on somewhere and they need to find it. The burning feeling is horrible and I can't take it! She is concerned that something is wrong in my cervical spine as well as the thoracic outlet.

So now I am off for more tests next week. I have to go through 3 different MRI scans. They want to scan everything and try to find where this is coming from. She said that we need to find it and then discuss the options. After my appointment I just came home, laid down and fell asleep for two hours. It was just another rough day. I still don't feel very well so I'm signing off for now.

I hope everyone has a nice weekend.