Got the official diagnosis yesterday. Spent 10 hours total between hospital and PT evaluation. Had the anterior scalene & pectorial minor block and it did NOT relax the muscles. What an awful procedure! They wouldn't give me a thing for anxiety or to calm me down. I was super nervous, had just spent 2 hours with dr and was hurting bad and having awful muscle spasms as nirmal. Why is it that i feel worse when I sit down? Anytime that I sit, i start hurting and spasms begin.

Today, I am very sore and it hurts worse to lift my affected arm and turn my neck from side to side. Is this normal? They said I'd be sore, but crap.....I didn't think it would make my symptoms worse! What other results have you all had with the blocks?

I have to find a PT that is willing to work with dr office and PT experts 3 hrs away. It's difficult in the small area I live in to find a PT with experience. This whole situation is stressful, and any success stories are much appreciated. I don't want to end up with surgery and want to try everything in my power to get myself better. This is a huge financial strain with having to take off work for this appt and that appt along with traveling 3 hrs one way.

I'm new to this forum and hope to gain some valuable info once I get to look around and read all the threads.

Julie

Hi Julie,
Sounds like you've had a rough day. I totally understand and can sympathize. My symptoms are bilateral and I had scalene block yesterday (11/23). However, the anesthesiologist would only do the block on one side so I chose my left side. I was put under twilight sedation and couldn't drive or work afterwards. I was a little lightheaded all day. Anyhow, my neck was sore yesterday but I iced all day as was recommended and just took it easy. Today I was fine. You had a to fit in a lot of other things (PT eval, pec minor block, lots of driving time, etc) so that probably also contributed to your stress/anxiety and spasms. While my neck feels fine from the actual injection, I've yet to see any relief of my symptoms which I'm told could take a couple days if it works. If it doesn't work, then it doesn't work.

I will do a scalene block on my right side next, probably in a few weeks. I'm thinking that I might need a pec minor block on my right side, as well as a scalene block as I seem to have more pec issues on the right.

Please take the time to find an experienced PT and one that is willing to work with you and not do standard protocol for TOS. They have to be able to listen to you and learn from your symptoms as to where they need to treat. As far as pain when you sit, your PT will be able to help you with this as it's all related to your head position, posture, lumbar, pelvic tilt, etc...the list is endless. Unfortunately, there is no magic pill for TOS. We didn't get this way overnight so assume that it will take a dedicated effort to beat it.

Also if you haven't already please do some research on diaphragmatic breathing which should help with some of your anxiety/stress. I have found a lot of relief with the Alexander Technique which is helping me realize that I'm holding a lot of subconscious tension in my body. The lessons help me to inhibit those holdings, basically reeducating my muscles.

Ask lots of questions of everybody and do lots of research online. You'd be surprised at how many people are my work are walking around with so much pain, I've become a resource to many and even helped somebody get rid of the numbness in her 4th and 5th fingers (ulnar nerve).

Good luck and I hope the blocks start working for you.

Shadow-thx for replying! How are you now feeling since block? Nobody really told me HOW I would feel so I don't know what is normal? I've been icing the injection sites, also. My arm has been so heavy and weak since the block. Is yours? I don't know if this means it worked or what? I don't exactly understand how I should feel if they muscles did indeed "relax". Would all of the symptoms go away? I wish there was more info about all of this! My arm was a bit heavy and week before the block, but now it's very apparent that it's worse than before. Does that mean the muscles are relaxing and the block is doing it's job? How am I supposed to find out this type of information anyway? Dr's offices are closed and searching the internet doesn't help!

How come you got twilight sedation? My dr assured me that once I walked to the north side of the campus to the pain mgmt place, that they would give me something to calm my nerves/anxiety. Pain mgmt doc said NO, they couldn't do that. He said if you were relaxed, then the injection wouldn't be an accurate way of seeing if it worked b/c you were already relaxed. Heck if I know! I just know I was exhausted, scared to death, tired, emotionally drained, and couldn't relax at all. The nurses and dr and staff were all so wonderful! Afterwards, my blood pressure was sky high and I was dizzy. He also got that nerve close to the scalene muscle and it made my stomache jump up and down and I couldn't breathe and had almost a little panic attack on the table. I had a huge lump in my throat and couldn't swallow well which meant no more food or drink for 2 extra hours or it would've went straight to my lungs they told me. The recovery room was FREEZING cold and I def wasn't able to relax after the injections. Wonder if that had anything to do with the block not working? I think I'm grasping at straws here.......I'm still so jealous that you got sedated! It was very unpleasant and painful, but not near as bad as when I had to have a wound vac 4 years ago after a hysterectomy!

What is your next plan of action? I have 6 weeks of PT then follow up with doc. He says I have true neurogenic thoracic outlet syndrome. Everything I read about that is def surgery to correct. I do not want to have surgery!!! I don't heal very well afterwards and it's just not good timing....when is it EVER?

Question, does your arm feel real heavy and week since block? Does cold air HURT where you got the scalene block? I walked outside after the movies last night and my neck got so tight and started to spasm JUST from the cold air. Guess I'll have to find out if this is normal!

Keep me posted on you. I'm glad people on this board can relate to the fear that we're all facing from all the unknowns!!!!

Julie

I'm surprised they didn't at least offer blanket in the recovery room... don't be afraid to ask for things you need - it's not worth the added discomfort.


6 weeks of PT probably isn't enough to make a huge difference on it's own, unless they are perfect & all goes perfectly, but don't be disappointed if you need many more sessions, it takes time , slow and steady.
If they seem to be making things worse and the sx are not decreasing , then time to step back and maybe try a new PT place or find more advanced therapists. They should be making adjustments each visit dep on how you are progressing, and they should not push for anything that makes you feel worse.
delayed pain is a problem with TOS so you may feel worse hours or day after PT. Remember to tell them that.

He says I have true neurogenic thoracic outlet syndrome. Everything I read about that is def surgery to correct.
That's not true. Mainly it depends on how severe your sx are and what you prefer. Or if any obvious anomalies are found that might be the cause of the pain /sx.
Sometimes vascular TOS will require surgery if clots are a high risk.

I always felt better when chills & drafts were off my neck & arms.
I never had a block done, but just tin general we tense up when chilled and that can set off spasms.
So keep a scarf handy when you go out.

I did receive a warm blanket in recovery after I asked. At that point, I was just so cold! That's part of the problem I'm having anyway, when my hand gets cold it doesn't seem to warm up very easily.

I live in a super small town without major physical therapy options available to me. This part of it makes me nervous b/c in a small area, it's tough to get the kind of expertise you need. The other major kink in this equation is how my insurance only pays for 20 PT visits each calendar year. I've already used 12 from the summer for a upper right trap strain (that actually may have been this TOS all along) and I have 8 more visits left. How many times per week does one usually go? I'm overwhelmed at the out of pocket expenses that are fixing to occur b/c of this situation. Between that the unknown about all of this, one gets so frustrated!!!!

Thanks for you comments!

Yes unfortunately, I have found that PT is often much more $$ than an expert chiro that does the PT type therapies- mainly aimed at pain & sx reduction- NOT strengthening. My chiro also did trigger point release when I needed it, he studied many extra therapy techniques.

Learn as much as you can in the remaining sessions, ask questions and pick their brains, but if they aren't helping at all don't waste the time or money there.

Mine was a work comp injury/claim , but I still saw the billing amounts.

Does your ins allow for alternative care options @ a reduced rate?

My chiro took pity on me -he could see I was in so much discomfort from severe spasms at the time, he let me pay cash for awhile @ only 25.00 per visit.
Some places may work w/ you for a reduced fee with cash- it saves on a lot of paperwork & red tape..

Many here have shared things that help them and often a lot of self help & self care is needed to keep sx at bay.

Posture is often a big thing, shoulders relaxed but inline w/ the body - same for head not jutting or forward of the body.

If you can get some of these books from the library they should be helpful.
*most of these can be googled to find the book titles and /or websites about them.
Sharon Butler - RSI book - has a long title so just search her name
Pete Egoscue
Alexander technique

many posture videos online - can search for posture evaluations and posture

usually best to try 1 major thing at a time and then evaluate how /if it helps or not, then try the next one.
After awhile you can add the ones that help into a home plan for you.

Sometimes just starting w/ laying in the "corpse pose" on the floor and relaxing with diaphragmatic breathing is a good place to start & end the day.

What type of things did your PT sessions consist of?

Did you list your sx already, or did I miss that?

Sometimes if listed we can offer some tips with what may help.

Jo*Mar- My story began in March of this year. I think exercising caused me to strain my neck muscle. However, I woke up one morning and it was so stiff I could barely move it to the right. Listened to advice from my husband and friends and went to the chiro. THAT is when the rest of the symptoms began! Not enough $$ in the world will send me back to a chiro.....especially when I feel as if this problem now exists b/c of him. I can't prove it, except to say with 100% certainty that the things I have going on began immediately after the first chiro visit. He adjusted my neck and all was good with the world. Then, he decided that I was too tense in the shoulder and adjusted that. It was then that I was in pain and it wouldn't go away. After a few more visits b/c I must be an idiot....I went to my family dr.

My family dr took an xray, it was good. Diagnosed me with a right upper trapezius strain. I began PT immediately and responded very well and after 11 visits I was pain free and feeling great. It was about a month later, I decided to do zumba classes and I played volleyball. Sometime weeks after that I began to feel pain on the opposite side but in the front.

Went back to family dr and he ordered an MRI. It came back good and he didn't know what else to do. He sent me to a pain mgmt/physiatrist sports rehab doc and he said he thought I had TOS. He was arrogant, argumentative and acted as if he wasn't very much interested in anything I had to say. He told me he would send me to PT. If that didn't work, then I could go to a specialist 3 hrs away. I told him to just refer me immediately. It took me 3 weeks to get in. Pain mgmt doc was going to give me a list of exercises to do before I got into the specialist. He then informed me once I asked for the list at the end of the appt that I could "look them up on youtube" Let's just say I won't be going back to him even though his office already wants to schedule an appt just to see what the specialist has to say. I am not paying an office visit to tell him what a faxed report can say!

Sorry for the ramble....but here are the symptoms I am having:
White hand when cold and it's freezing inside/out
Weak strength/grip
Muscle spasms in the neck
Constant spasms/pain in the neck/shoulder area
Trouble sleeping b/c of pain
Numbness/tingling in arms/hand esp if raised above my head
Shoulder is drooping and neck is sticking out

Thanks for the book suggestions! Going to check and see if the local library has any of them.

Julie

But, what if you found a highly skilled & expert chiro that could "repair" what that other one did?
Something to ponder, I know I would not be in a hurry to seek out another one, or PT ,or MD if I felt they made things worse though...

The DC I went to used ultrasound, IF stim to warm up and loosen some of the tense muscles before any adjusting. Sometimes even Low level laser if needed, for specific spots of pain.

I wonder if the one you went to tried to do a top rib adjustment and it didn't go right or went too much...

So, most of this nerve related hand/arm stuff started up after the adjustments? None of it before - other than the stiff neck that you started out with?

If so,
I do wonder if a different & better DC could fix what happened, or possibly a Osteopathic doctor (DO) or advanced PT person?

Logically thinking - if it started up after those adjustments it must mean that DC adjusted something in a weird way and it is affecting the nerves that weren't affected before.
But you did go back a few more times, so if he was good he should have been able to rectify things, but I don't know his skill level, expertise, or training... and a percentage of many professions are just not all that they can be...some are just duds...

And also a certain % of people have slight anomalies - some have double veins, twisted veins/nerves, larger than normal bones, or any sort of minor differences - many of these must not show up on MRIs very often. Or they just aren't noticed/reported by the technician.


Have you seen the info on trigger points in the sticky threads, that is something you or a friend can check for - they can cause nerve type sx also.

I had awful problems with muscle spasms. Diazepam is what knocked those out. I take 2.5mg 2 X per day. I plan on trying 2mg 2 X per day for my next prescription.

My symptoms went down and other modalities like OMT and PT became easier.

I'm also investigating some non-drug approaches to reducing muscle tension and spasms. I'll report back what I find.

Well, fast forward a few days and symptoms have worsened BUT gotten better. My muscle spasms has lessened BUT my shoulder is in lots of pain. Got into a PT today that was very thorough. She told me that my scapula muscle is down around my arm pit! OMG-no wonder I'm so uncomfortable and have shoulder pain. Her theory is that this thoracic area has relaxed and maybe that my scapula is really more out of whack now. She didn't see me before the muscle blocks. She will work with the PT 3 hrs away that my doctor requires.

See, I'm telling you that being out of alignment in the first place has caused this problem! I just wish I had some type of solid proof besides my word against chiros. PT assured me today that 6 weeks wasn't going to cure my problems I've got going on. Pretty much what the other PT said on Wed. Although I am frustrated, I am a little relieved that someone has explained this to me where I can understand it.

Has anyone else ever been told they need to take off work while doing therapy? I do not have a repetitive job. I teach 5 yr olds! I never do the same thing for very long throughout the course of the day. I am going to continue trying to work while doing therapy, if I worsen then I will stop work. I guess most people that have this TOS are workman's comp claims? If I don't work-I don't get paid. I don't have disability reimbursement, extra sick leave built up, nothing! No payment means I can't pay for treatment. I'm sure this stress and anxiety doesn't help!

Thanks for listening!
Julie