Hello

I am 6 weeks out of TOS surgery Still have pain have had a little set back. I have a great deal of upper body pain across chest. My neck has become painfull especially at base of c spine I do have a 3 level cervical decompression with fusion and titanium plate. I feel the TOS surgery has weakened my neck I have alot of pain and pressure. I remain in hopes of hearing from Social security disability about my hearing date. Anyway just wanted to see if others still had pain at 6 weeks after surgery.

Hope to hear from someone I'm going crazy from being alone and was in hopes that I would be able to cut down on my medications but I haven't. I feel a little down loosing hope but maybe tomorrow will be a better day.

Beverley

Beverly this is really early into a recouperation. I know it was at least three months until my daughter felt really improved. Until then neck was restrcitive, forot reaching for things and jerked with pain, etc. It is like a C section if anyone had one. Some parts of the body feel ok, then others are really still "feeling it".

Keep up range of motion as they allow, hot bath soaks help a lot, if you can get in a pool not swim, but hanging in the water, put your arms on boars or noodles to support and walk. The weightless helps the muscle get strong with no efort.

You do have complicating issues with your fussion...I think this is a contributing factor many TOS folks don;t have. Makes recovery difficult as that area is going to try and compensate for the neck muscle and chest area trying to regain itself.

There is a lot of truma to surgery, large instruments, reaching in and traveling into the chest deep, pulling and tugging. Not like taking out an appendix.

Give yourself 6 months.....even then you may not feel perfect, but it takes everyone different amount of time and in your case, I can certainly see it being longer.

Hope you feel better soon,
Di
PS when you sit, support your arms on a pillow, if your ride or drive too. You may want a TOSs pillow under your armpit for support. Out side, use a fanny pack or belt wrap to stick your hands in for support.

I wanted to thank you for your kind words you are always so supportive. I guess I'm just expecting to much at this point. I'm just so financially devasted that all I can think is if I could just go back to work things would get better for my husband and I. I am so sad that he has to live with me like this we have been together since 6th grade and married for 31 years he has been so good. We never dreamed we would be in this financial situation I was always successful in my career but just developed to many problems and it took years to finally get a diagnosis. I also wanted to ask about DeAnne Marie I hope its not to painful but I always see post and I am new and not familiar. Anyway again I just thank you so much for taking the time for me.

Beverley

I'm so sorry you are feeling depressed and frustrated.

Feel as though you can come here and vent anytime. There are lots of warm hearts and willing ears.

I bet your husband is just as ok with you now, if not more, than he was 30 yrs. ago. hugs. phoebe

Beverly you could echo so many of us. I knew my husband that long, we are a second marriage though for us. He lived next door to my grandma, My Mom and his older sister great friends. We re-met after divorces, dated for 13 years, engaged a year and will be married 15 in August.
We have yours mine and ours with children.

I was a success in law enforcement, I even was made a Chief in my small town. It is devastating for us to try and make it on my SSDI and 8 - 10 hours of work. My house ...I don’t even like to think about when my home use to look so super....He just like to have clean laundry, bed and food. Even a TV dinner if that has to be.

Thanks for asking about my DeAnne, sharing her story helps. But if things upset you it is not a happy ending.

I found the forum looking for information ten years ago when my daughter DeAnne was post op her first TOS surgery. She was injured at 16 and diagx and surgery at 19 with Dr Togut where we live near Wilkes Barre, PA.
She had a lot of scar matter then, and did a second time. She had a redo surgery to clean the scar matter that had entwined on the cervical nerves, it was wrapped in gortex/pericardial patch, Adcon-L pack to help prevent scarring and pain.

She had a body that had too much nerve damage and never could go back to work. Later in life, She relied heavily on me for her care as far as advocating for w/c battles and medical care. Cleaning for her, meals, she lived in front of me and I took her shopping, she took home food I made. I had her medications to make sure she took them properly.
She had been on Oxycotin, up to 400 mg a day....She became heavily addicted to them,. She was the first to admit they ruled ehr and she loved them...

She detoxed off and went on to try methadone, went into liver failure, then to Duregesic patches. She went up from 75 mcg 2 days to 150 mcg. She also ended up having psychological problems dealing with live. A broken engagement, living with nothing but pain, not having a group of friends, sleep to be rid of pain, pain keeping her from sleep....

She had battled with all her body energy, when that ran out her mind had to take over, when that was running out it was all soul power...eventually that must have been empty too.

De had spent a week in a behavioral unit near Phila. They were to help her regain life, to manage pain, potential for a pain pump to be free of taking meds. She could not manage to remember days or times. To avoid over dose, I had to give her meds....

When she cam home from the behavioral center they sent her home on ten medications...I noted and called, and enforced she could not take SSRI's she had psychotic events, seizures, and could not pee.....
I never knew they sent her home on SSRI;s, gave her haldol,

Saturday night about 11{30 PM I left her morning meds for her. I worked at 10:00 Am and she hated to come up and wake me for them...I waited until she fell asleep and took them down.
Sometime Sunday she passed away.
I found her when I came home from work. She did not call me all day as she normally would have and I was a mess to get home....

The coroners report said the Duregesic; combination of SSRI;s and haldol overdosed her. She was 29.
There was only her normal dose of Duregesic patches on her, but the level was elevated.....

My forum family here has been my God send for sanity, love and support.
Old friends new friends, all have such compassion.
I miss my daughter terribly, but who am I to have her living a live of pain . I only wish I could see her, talk to her.

De was like a poster child for TOS. She had it terribly bad, but always loved people and had smile and love. She was challenged with her mental issues, but would in a minute help someone.

Thanks for asking, time heals, so does sharing my daughter. Many gals here were like Aunts to her.
Dianne
This was taken our trip to Disney in October, the last picture I have of her.

i think your feelings are absolutely normal- i am at 9 weeks and still on plenty of meds (also still waiting for surgery on the other side)

do you have any feelings of improvment? Are you doing exercises to keep/increase range of motion? Have you done any post op PT ? (with a good therapist...) are you able to do any kind of cardiovascular activity, even walking around the block?

i would expect as slow but somewhat steady rate of improvments with occasional setbacks for when you will inevitably overdo (we all have to learn, right )

If I recall, you were feeling pretty lousy for an awfully long time before you had surgery, your recovery rate will be proportional to that.

I am still experiencing pain in the spot where i had the most nerve inflammation, but it is significantly decreased from what it felt like before surgery. Also the range of motion in that arm has increased- as it used to be limited by the pain of that inflamed nerve.

Try to recover as best you can before jumping back into work- your longer term prognosis (and earning power) is much better if you do.



Johanna