My TOS story
 

Hello everyone,

I am new here and would like to shortly tell you my TOS story.

Symptoms started in spring 2012 with my ulnaris nerve painful at night and pinky & ringfinger numb (right arm). One night last june I had terrible pain in my left upper arm as if I had a thrombosis. My husband drove me to ER but they couldn't figure out anything. My family practitioner was quite clueless too and sent me to a neurologue as well as a rheumatlogue - nerve velocity was all right and I have no rheumatic issues either. They gave me a splint and recommended not to use my right arm too much. This is quite impossible since I am working as an analyst 8 hours everyday in front of my computer...

The splint was useless and caused pain at night (arm swelling). I then got some PT for 2 months. Things got worse since March 2013 with pain now in right and left arm, shoulders, neck and upper thorax. I have a lot of bad trigger points and it is impossible to massage my upper body. I lost a lot of strength in both my arms and hands. Also, I do have occasional rining in my ears (mostly in the morning and in the evening).

TOS was discussed about a month ago and confirmed this week after a phlebography of my arm vein. Depending on the arms position the blood circulation stopps.

Causes: there are no visible underlying causes. I have been a violoinst (amateur) for almost all of my life and I also loved running. Computer work was heavy these past years and posture not always the best of course. We had a car accident in March 2012 and symptoms developed ever after.

For the past months I have been in pains most of the time and been eating NSAID's, painkillers and even had morphine prescribed which I couldn't take for it made me sick so much...

It sure is not an easy decision but I do not see any other option than going ahead and do the surgery. Will undergo surgery mid-June. Trying to stay positive.

Take care everyone

Isa

Isa,

Whiplash from a car accident is a very common cause of TOS. Did you have this injury when you had your car accident?

Kelly

Whiplash
 

Dear Kelly

Yes, I did have a whiplash injury after the car accident. However, the symptoms of TOS that slowly showed up afterwards were never associated to the accident. I just couldn't figure out what was going on with me until very recently.

Did you experience similar injuries?

Isa

I have a cervical rib which pre-disposes me to TOS. Before I knew about it I had an accident (my dog ran me over and my TOS side arm took the weight of my fall) but the majority of my TOS symptoms didn't appear until almost 6 months later.

Isa,

I did not have a whiplash injury, but I've read that car accidents are common causes of TOS. I think it's a combination of whiplash and the placement of the seatbelt, which can aggravate the brachial plexus.

I don't think it's uncommon for the symptoms to then come on gradually. It's worth raising with your doctors.

Take care,
Kelly

Isa,

My 1st bout with TOS arose due to a car accident. For me, my arm was unusable from day 1 after the car accident. My whiplash type symptoms subsided over the course of the next 1 1/2 yrs but the TOS symptoms went in the opposite direction. By the time the doctor listened to me about my lack of arm/hand function (9 months post-mva), the nerve damage was severe enough to show up on EMG/NCV. Yes, whiplash can cause TOS because the scalenes are involved.

At this point, I am > 8 years post op on this side and I am symptom free. I have some obvious muscle atrophy in the hand but I don't notice any limitations due to this.

Thank you so much for your message. I am glad to hear that >8 years post op you are symptom free. This is very reassuring for me since I will have my surgery in about 3 weeks...and I read also some terrible stories.

My case is almost similar. I had whiplash after the car accident but that susided quite fast. But then I started to have nerve pain and weakness in my hand. Things worsened in the past months. Here in Switzerland, for social security reasons and to prevent litigation, doctors don't want to admit that TOS can be a consequence of a car accident.