[diane54]

Hi
My name is Diane. I live in Seattle. Been struggling for the last year and a half or so.

Started out with frozen shoulder - eventually ended up with a physiatrist who worked me up and have received a diagnosis of bilateral TOS as well as C5-6 stenosis and bulging discs.

Saw a well-respected vascular surgeon here on the Eastside of Seattle who recommends the axillary surgery. I had about 8 weeks of PT which didn't do anything; however a scalene block did give me about 80% relief. He says this indicates I would probably do well with surgery.

Not sure I'm sold, as my neck/arm/shoulder pain also completely relieved with a C5-6 epidural steroid injection - lasted for 6 weeks. Leads me to think that a cervical foraminotomy may be the best option.

I've never had chronic pain before and this is wearing me down. I work 8-10 hours per day as a medical transcriptionist and this sure makes it hard to my job.

Would like some advice on the TOS surgery. I'm willing to give it a try if it will give me some relief. I feel confident in the surgeon. If you want his name, private message me. I'm getting a repeat scalene block this week to run that test again. My diagnosis is "true neurogenic TOS". He wants to go in under the armpit.

thanks for any advice and look forward to hearing from some new TOS friends!
Diane

[Jomar]

Hi Diane,
I copied your intro here for more hellos' and replies.

8 wks of PT was not enough to make a big change for my symptoms.
I had about 3 sets of sessions ( 1 session while still working = no improvement at all as the driving to work and modified working voided any PT benefits)
the next session was still focusing mainly on my arm symptoms and not the whole picture. Finally the last session addressed the whole but "they" decided to try me back at work full duties and I was hurting again in no time.
So they sent me home again.
I decide to take a more proactive role in my own care and found a good chiro & also went to a private advanced PT - got quicker better care from those sources, plus all I did at home with focus on stretching & trigger point...

[DiMarie]

Originally Posted by diane54

Hi
My name is Diane. I live in Seattle. Been struggling for the last year and a half or so.


I've never had chronic pain before and this is wearing me down. I work 8-10 hours per day as a medical transcriptionist and this sure makes it hard to my job.

Would like some advice on the TOS surgery. I'm willing to give it a try if it will give me some relief. I feel confident in the surgeon. If you want his name, private message me. I'm getting a repeat scalene block this week to run that test again. My diagnosis is "true neurogenic TOS". He wants to go in under the armpit.

thanks for any advice and look forward to hearing from some new TOS friends!
Diane

Hi Diane,
I think that your job as a med transc is the contributing factor to the pain. If you have the surgery it is likely you will still have the issues.

Because the blocks help I would do some consideration. First consider w/c as the treatment and work modification. You need to rest the nerves. When you had the blocks and the medication rested the nerves you felt better.
If you have TOS surgery it will open the outlet area the nerves run from the cervical spine into the area from the collar bone, shoulder, chest and arm to the hands.

But reusing your hands to key and work again is a new injury every day, I was 50 and had to reinvent myself. My key thing to reducing to live-able pain was that I was off work for the knee and back injuries. That rested my arm nerves too.

I have dragon, work from home. most computer work is pleasure anymore.

My greatest reduction was a well placed epidural in the c-5 hump.
I hope you can find reduced pain and help.
Dianne

[Sheri_TOS]

Diane-

I'm from Seattle, too, and had the TOS surgery by a dr on the eastside. Maybe we've seen some of the same doctors? My TOS arose in an MVA but I was predisposed to TOS due to an abnormal 1st rib. The surgery was successful (7 yrs and still symptom free on that side) but I suffered a one-time injury to the area and couldn't use the arm from day 1 after the car accident. This is different than most TOS cases that arise from repetitive motion where lots of scar tissue builds up before the sx show up. I have TOS on the other side due to a cervical rib and when the sx get bad enough will see the dr on the eastside again.

DiMarie is right that your job is likely contributing to the problem. The TOS surgery is hard and not everyone does well. Two months isn't enough time but I threw in the towel after 9 months of conservative treatment as things were escalating and I had to try something. Personally, I think you should try to see a good PT. I can provide the name of a PT who can handle complex cases (you are a complex case with shoulder, neck and TOS problems). He picked up on my undiagnosed shoulder injury two years before drs finally noticed it. I also have the C5/C6 stenosis and face fusion surgery later this year and have had both shoulders operated on so I've been there, done that.

[diane54]

Hi Sheri... Thanks for your reply. Do you live on the Eastside? I hate to mention a Dr. name on this forum so maybe we can private message. Probably the same doc - I have a lot of respect for him. He has been on the Eastside here for about 20 years in Bellevue. I have a great physiatrist and hand surgeon. Have already had bilateral nerve releases on my forearms and getting a thumb reconstruction soon. Yes it probably is my job, but I need to work for another 7 years so need to get through this and really don't want to go the route of w/c if I can hang in there. I would love the name of your PT. That would be helpful. My doc wants to send me for Feldenkrais therapy? Ever heard of that? They are having a hard time with me with all these issues going on at one time. Very frustrating...

Thanks for your reply! Diane

[BKRich]

Welcome Dianne, like you I've discovered this forum recently, after being diagnosed with bilateral TOS

I'm still undergoing physical therapy, and am not considering surgery yet so have nothing to offer of value to you about that. If you are willing to share however, I am very interested in your experience with scalene blocks, since this is something I'm actively considering myself.

[diane54]

Hi!
Good to hear from you.

I had one scalene block a couple of months ago that gave me about 50% relief. Its not too bad, they hook you up to EMG and then use ultrasound to locate the scalenes and then inject a few times. I had one side effect where I lost my voice for a couple of minutes (scary!) and my eye started to water, but was gone in a couple of minutes. I got 50% relief from the scalene block which my pain doc said was probably not enough to justify a surgery (not that I want the surgery!)...

He is doing another scalene block study this Friday. Doing both sides this time to see what my relief is.

This is all confusing as I also have neck and shoulder issues so trying to pinpoint the exact cause of my real pain issues could be coming from the neck, TOS or shoulders. I had complete relief with a C5-6 spinal epidural injection for 5 weeks, so we are guessing thatmy cervical spine is the culprit of my "real" pain.

I have neck surgery scheduled for May 6th but am going to use these next 6-7 weeks or so to go back to PT with the hopes of getting enough relief that maybe I won't need the surgery.

Unfortunately, my job of keyboarding as a medical transcriptionist in a high productivity environment is not helping matters, but not working is not an option so I must push on...

I'm also having an ergonomics expert come out and look at my workstation (should have done it a long time ago!) and will most likely invest in a good chair.

I'll post Friday to let you know how the block went!

Diane

[Sheri_TOS]

Diane,

I've had the epidural shots in the neck, too. For me, I had about 2.5 years of relief from the neck issues. After the shots, it showed that my shoulder (unstable) was the main contributor to my continuing problems. The TOS surgery relieved the symptoms down the arm and I regained the use of the hand. But I still couldn't handle the arm away from the body until I had shoulder surgery. So my neck/arm/shoulder was good for about 2 years until I feel in early January hurting the shoulder and neck again.

Who's your neck surgeon? I'm seeing a new surgeon later this week as the surgeon I saw a few years ago isn't contracted with my insurance. We should really talk as we have likely seen some of the same doctors.

I sent you a PM with my TOS surgeon's name.

[BKRich]

Dianne, thank you kindly for sharing your experience of a scalene block. Because I am likely to relocate internationally soon, I’m inclined to try it out in order to know whether it is a useful therapy prior to having to engage new medical professionals after relocation.

My work is office-based, with a lot of time spent in front of a PC. My employer has an occupational health section which includes an ergonomics advisor, who is also a nurse. Together we have made several adjustments to my work-station and I’ve subsequently made similar adjustments to my home work-station. Specifically:

Work

An electronic height adjustable desk
A BMA Ergonomics Axia Plus chair with a headrest, and with the arm-rests removed (because using them irritates my ulnar nerve)
An “Ergo-Cloud” ergonomic attached to my desk which my forearms rest on whilst using mouse+keyboard
A heavy-duty, height adjustable footrest

Home

Fixed height desk (on my list to replace)
A BMA Controller Chair with a headrest
Another Ergocloud or similar device
A heavy-duty, height adjustable and tilt-rocking footrest

I’ve found the BMA Axia Plus or BMA Axia Max chairs to be excellent in terms of support overall, support for the head or cervical spine specifically, and adjustability. I’ll post some pictures if you are interested.

Originally Posted by diane54

Unfortunately, my job of keyboarding as a medical transcriptionist in a high productivity environment is not helping matters, but not working is not an option so I must push on...

I'm also having an ergonomics expert come out and look at my workstation (should have done it a long time ago!) and will most likely invest in a good chair.

I'll post Friday to let you know how the block went!

Diane

[diane54]

Hi
That would be awesome to see some pictures... My list includes an electronically adjusted desk and a great new chair - even if I have to take a loan on my 401K to get it!

If you could post a pic of your chair that would be greatly appreciated!

Like I said, I'm getting a scalene block tomorrow afternoon bilaterally, so am hoping for some relief.

Then I am pushing on with 5 weeks of intense PT, massage therapy. If by the end of April I am still suffering, I think I will go ahead and schedule the surgery. I have a great PT and start seeing her again tomorrow as well.

Thanks!
Diane