I am 5 weeks post tos surgery...resection of rib, scalenectomy, and pectoral minor clipping of ligament. I have a question for all of you that are also post op. The affected side of my face is numb. They say they do not hear of that very often so it is a worry to me. Anyone else have trigeminal nerve involvement after surgery? Would appreciate any input.

Maybe the patients are not relating, or by post op it is gone away.
The nerves are being poked, pulled and prodded, they can be injured or damaged.

During the surgery there is often a lidocain pack placed on the area to calm down all the surgical flare. When 6 weeks goes by and you still feel like Novocain in face, there may be an injured facial nerve.

If it is not making your face droop or pain as in being nicked, it may just take another 5 weeks to calm down.
If you tolerate a steroid pack maybe the doctor will try that to calm the symptoms.
Stay off the phone on that side of the face if you can remember.

Don't be alarmed, it takes months to really recover.

Glad you're doing as well as you are after major surgery.

I didn't have suregery but probably needed to. I have some numbness and slight drooping to the right side of my face without surgery from TOS, scanelenes and pecs. It's gotten a lot better over years. Hope your goes away.

Praying you have the best result possible...

I am now coming up on 9 weeks post TOS surgery. My right side of my face is still numb, as well as my neck, chest, back of arm and hand, not to mention the continued pain. This has been the most horrible thing I have ever done! I am still praying for recovery. I would love any input.

Nine weeks is a while, but not like nine years, either.

If you haven't started a log/diary of your pain level at various times of the day, along with describing the pain at that time, meds, food, stressors, progress, regression, exercises, if any, then I suggest you do.

also phone calls regarding your problems here. get the name, date and time. there are many tests in your future. it will take a while.

Have you tried relaxation and deep/belly breathing techniques. They are a great starting point. Jo*mar has good links for that.

You must start to recognize what is irritating your symptoms, or are you just constantly tournmented? probably the latter. So sorry you're having these problems It'll be okay.

You're going to need help figuring out what you can do with our activities of daily living, like a hairdryer on a stand. Boy, did that save the millisecond - a day has never come that I'm completely painfree. so baby steps right now.

Soft seemed to be better for me. Oversized tennis balls to prop my arms and neck and shoulders, back, butt, leg, hip, .... very helpful. You can get them in the sporting goods dept or pet stores somes has perfect balls for TRIGGER POINT therapy. Lots of info here on TRIGGER POINT THERAPY

You will have to do what you have to do right now just to get through the days. If it's heavy pain meds, Neurontin, which helped me but has some unsettling side effects. I'm not comfortable taking that doing as well as I am today. There's also Lyrica to check on, to see if it may help the neuro thing going on.

Learning how and when to medicate is another must. Like, don't take Celebrex and Tylenols or Advils together. Inhale water for your stomach and your liver and lymphatic systems.

I slept in a nest for eight years. I had lots of them around the house, too.

Healthcare providers are hard to come by for treating TOS patients.

You're surgically altered, so be very careful who you let work on you.

It could be that your nerves are VERY IRRITATED right now, and for a good reason. But nine weeks with these numbness sensations and other things, you need to get another opinion or two, I think. It takes a while to get in for an appointment, so I'd start now.

You must insist sometimes if you're not being heard.

Here is a link I wrote about three years ago. http://neurotalk.psychcentral.com/thread60797.html

Don't take on so many new things at once. You won't be able to tell which one is helping. Good thing to note in the log, when you start something and plot its benefits. I graded things as positive or negative. That helped me make most of my decisions.

Like it or not, you have to learn about these things. The more informed and knowledgeable, the better your recovery.

I did find comfort in knowing that my arms were not going to explode ODD! ! !

I also used to say, "I wish I could chew them off or shoot them off", and I wasn't joking.

It is bad to find yourself in a place like that, my friend.

Keep us posted and ask questions. ASK AND ASK AGAIN IF YOU DON'T GET A COMFORTABLE ANSWER...

Here's a hug for you we understand

Have you gotten any kind of therapy , massage or anything yet?
Your surgeon or dr should follow up with something to help you.

I am now 10 weeks post op. Thank you for all the great information and words encouragement. I have numbness along side of face, neck, chest, back of arm and tingling and numbness to hand and fingers. The pain is pretty much along all of those lines and shoulder blade. My physical therapist is frustrated as well because of the long thoracic nerve being 'dead' and says it will be a long road of baby steps. He is going to start water therapy to 'get things moving', but is concerned that if we aren't able to move better things will get 'gummed up' with scar tissue. He has also suggested future tens use. After being told by my doctor that it is simply too early, I asked if there was anything else to help with the pain and the continued nerve involvement. They have started me on the lidocaine patch. It has helped me some at night with the sleep....I have been able to sleep for 2-3 hour spans and that is a Godsend, but, you can only wear it for 12 hours and off 12 hours, so as soon as I take it off during the day it hits me hard! However, they did something so that is good....any ideas?

It may not be right for you, but I had a doctor in the past give me FLECTOR patches. It's kind of like ibuprofen in a stick on patch (it's not ibu, but same kind of drug) that's the same type and size as the Lidoderm. Because you stick it right on the place that needs it, the med goes right in, and it doesn't affect other medicines you are taking by mouth. Lately, someone gave me VOLTAREN GEL. Same med as voltaren, but again, you smear it right on the part that hurts, so the systemic effects are minimal and it doesn't interfere with other stuff you are taking. Neither are the same as lidoderm patches (which I've also had), but they do work pretty good in their own way. Might help a bit during that other 12 hours? Wish I had more to offer you.

Glad to hear tha you are doing better, though I'm sorry that you are still experiencing pain and discomfort. I'm having surgery next week and I feel for you! We may be in the same boat!

Chin up!
Jocelyn

Jocelyn...certainly will be praying for you and your surgery. Please let me know how you do, and if I can be of any encouragement to you. I know this is a tough spot to be in and I am just taking the baby steps that I can do, as you will see. Hopefully you will have a quick and speedy recovery!