[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

[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.

[astern]

(((((((((MOMZ)))))))))

[KLS2007]

I'm sorry to hear that things didn't go well and that it was a painful visit to the doctor. On the bright side, it sounds like this doctor wants to get to the bottom of it and may be able to offer some good options in the near future.

[momzpeachy]

Hi all

I am completely and totally SCARED! I can't do this anymore! I hurt so bad. I am on 60 mg Avinza, 900 mg Neurontin a day and 600 mg Ibuprofen and STILL have pain! It is worse than is was before the surgery. I can't even move my right arm at this point. It is throbbing and I can't stand it! The pain in in the BP area and runs down my shoulder and into the scapular area. It's HORRIBLE! The pain has been so bad the last few days that I feel sick. I am also soooo tired. I fall asleep now all the time because of the pain. I just don't understand. I was doing a little better and then took a DRASTIC turn for the worse. Is it something I did or did something go wrong? Am I just one of those who has bad luck with surgery.

I am having 3 MRI's done Thursday. A soft tissue MRI, a C Spine and one of the BP area (both sides). I didn't think TOS can be seen on an MRI. She isn't sure if this is still due to TOS or if it's coming from the spine. She knows something is terribly wrong and we need to find it. I know something is wrong too and she mentioned surgery again. I CAN'T DO IT! I can't go though this again. But what do I do. I am pretty certain this is a TOS issue and it's on both sides. It's the same pain as before but worse. I just don't know what they can do for me. I am tired of all this. I still can't drive, drugged up and BORED but still in pain. Lucky me!

I have a feeling I have damage to the long thoracic nerve and that is why I have so much scapular pain. They are now looking everywhere so here goes more bills and more tests. More worrying.

If anyone can put some sense to this...please...I'd love to hear from you. I am freaking out. I'm 35 years old and feel my life is ruined! I will never be the same again.