Hi Jo*mar

Curious to know if you recall any members on the forum that have experienced facial numbness on their operative side that starts acting up when laying down and as a result even when getting plenty of sleep creates aching type pain and when rising in the morning feeling just awful dizzy/lightheaded & nauseous and great fatigue throuhout the day. This is now occuring 20 months post op in addition to neck & chest tightness & BTW I can only sleep on my non-operative side only as when I sleep on my operative side I get almost a choking feeling which in turn brings on coughing and more pain.
I also have had shortness of breath quite a lot post surgery which has been very slow in improving....now mostly with exertion. I have been told that with phrenic nerve injuries it takes a long time even when it heals that the diaphragm takes time to get stronger to move as it should......also curious to know of others who have this problem.
Can this be scar tissue creating compression on nerves, etc.? and have others who also have experienced these symptoms found any answers?

chloecasey

chloecasey, Many have had TMJ sx w/TOS, I don't recall anyone mentioning facial numbness or symptoms like that.
You could try a forum wide search (link in my siggy) for posts about that, make sure the time frame goes back to 2006 the forum start up year.

Jo*mar

Thanks for responding....I don't have TMJ at all.
Forgot to mention that I had Horner's syndrome (operative side eye) that still is evident especially when fatigued.....another symptom of injury to the sympatheic nerve chain, as is the phrenic nerve.

chloecasey

Hi Stos,

Thanks for your welcome. I live in the Los Angeles area and think I have a pretty good team of help at the moment, but am open to any/all new suggestions.

My goal is to get back to work so anyone that can help me get there I am good with. I was in Sales when this hit, and it became impossible to drive for extended periods, sit for extended periods and the stress of the industry I have been in for about 20 years brought on more pain. I have been out of work for almost a year and really would like to get back to something.

Out of Curiosity what do others do for work out there that does not aggravate their symptoms?

Thanks Kelly,

Everyday is a new and different experience. Sometimes the regular pains I have subside, only to have new stuff. This is the oddest thing I have ever gone thru.

Are you able to work at all?

Hi Jo-mar,

Thanks for your response and all the suggestions. I have done all of those therapy's at one time or another, all seem to give some relief, however fleeting.
Some bring on more pain and issues, but I still keep doing them. The best relief I have had is with the Spinal Q brace, it lessened the pain in the scapula and shoulders to a manageable level, however did not take care of the neck pain and arm and finger(s) pain.

I want to avoid surgery at all costs, and I am wondering if you or anyone else have had any experience or success with shots like botox etc?

Teresa,

When this all started I felt like my doctor was looking at me like I was nuts. Every time I saw her I had a new ailment.

I haven't been able to work since I went out on what I thought would be a two month leave (that was in Feb. 2003). It's been a huge adjustment to go from a busy person who got to use my brain to one who spends most days leaving the house once a day for a cup of coffee.

Take care,
Kelly

Hi Kelly,

I relate to all you are saying and my heart goes out to you. It has been difficult for me as well to go from a very busy person to basicly a pile of rubble.
It has been a very rough year physically, mentally, and spirituality for me. I lost my Dad, my Mom is terminally ill, lost my job and my health all in 6 months time....it has definately taken a toll.
I am hoping that I can get back to some form of work soon, it is difficult when you don't know day to day what your body is going to do.

Hi Teresa,

If you are in the L.A. area, You are very lucky as Ando and Aston physical wellness therapy is in Anaheim Hills. Dr. Art Ando and Dr. James Sposa are very highly specialised and know TOS very well. I travel from Northern Cal just to see them. I highly recommend them unless you are seeing them already! They truly are masters at what they do. They will teach you how to be able to sit, maybe mobilise your ribs whatever is needed and help you with getting better, they can just see and feel whatever is not right in your posture, your musculature, any myofascial issues and have ways to fix it. It was the most thorough evaluation I have ever had. Their exercises are helping me a lot.
www.andoaston.com, Phone (714) 974 0330.

I also do Peter Edgelow's diaphragmatic breathing routine which I learnt here in Northern Cal along with the L.A. therapy exercises. Any Abdominal Breathing is so important to help you relax and feel more in control than out of control and there is so much more to it when you have TOS. It reduces the compression on the nerves and vessels.

I also believe in doing cardio almost everyday for 20 to 30 mins atleast to warm up those muscles, essentially breaking out in a sweat. Just walking or whatever form of cardio that does not aggravate symptoms. No incline,no swinging arms etc.

I have never benefited from any kind of shots, always got more injured, so please research and study it properly before you go ahead with them.

Qs. What kind of bilateral TOS do you have? Is it mainly neural? Who did the diagnosis?
Qs. Are you taking any nerve medication like Gabapentin/neurontin?

Hi I am in L.A. too-I am having the same trouble trying to go back to work. Take a look at my response to Tic2 and also search my thread JKL's journey or how I am seeing all the dr's in L.A. I would like to compare notes and find out who your "team" is. I recently tried to work part time after a year but dont know if I will be able to go back to my regular job.