So I had a appt. yesterday with Dr. Robert Thompson in St. Louis, MO. Just sitting in his waiting room with other patients was a wonderful experience. First time besides on here that I have felt like someone else was experiencing the same things as me. So after a long and indepth meeting with Dr. Thompson and his associates, he came to the conclusion that I do indeed have NTOS. Finally, an answer. So from here the options were either try Physical Therapy again, or schedule surgery. I have already gone thru 4 months of physical therapy but wanted to meet with the physical therapist in St. Louis to see if they had any other opinions or suggestions.

After meeting with the physical therapist we found that there are several muscles of the shoulder that are not working properly due to the TOS. We concluded that surgery would be the next step.

So we have scheduled a scalenectomy, first rib resection, and pec minor release for January. So if anybody has any advice regarding recovery, things to think about before surgery, experience at Barnes Jewish Hospital or anything, all would be greatly appreciated.

I also am very worried about being a mom of 3 children, age 7, 5, 3. Not sure how long I will be unable to do my duties at home as well as work. Very thankful that I have a husband that is willing to help out, but not sure how long his work will allow him to be away.

Good luck with the surgery! It sounds like you did your homework, and spoke to the right people, and I am glad that your treatment team is all on the same page. That is very comforting.

A few tips from a nurse and a mom: TAKE CARE OF YOU FIRST!

Start eating a balanced diet, eat the right foods, forget the calories. Lower your sodium intake and drink AT LEAST six bottles of water a day from now until 4 weeks post-op. This will give your body the nutritional building blocks to heal, and flush toxins from your body. Weight management should not enter your mind!!!!!

Try to schedule your support people to help you, so that you are not overwhelming only one caregiver. Even if you have one person who can give your hubby a break two days a week, that's a lot of help.

Start talking to your children about this right away. In a way that they can understand, explain that you are going to have surgery, that it is going to hurt, but it is going to make you better. Explain what your physical limitations are going to be, and tell them that you are going to need them to be your helpers. Children love to help out, and if you explain their role to them, your life will be so much easier.

Get them on a "self care" routine. As appropriate for their age, let them each have a "helping mommy get better chore list". Putting away toys, putting thier own laundry in the hamper, feeding the pets, hanging up thier coats, etc. Be careful not to let it appear that one child is assigned more than another, or create a hierarchy. Kids don't like a new boss, especially if it's another kid! Make this about everyone in the family having jobs to do, rather than one person in charge. Reward them for getting their chores done. (I love the sticky stars!) I once had a little diabetic girl with cerebral palsy as a patient. The only way we could get her to comply with drinking fluids was to do a "reward board". A star went on every time she ate a meal and drank water, and if she got all of her stars by the end of the week she would get a suprise. I then went to the dollar store, and bought her a cardboard dollhouse that she could put together and play with. You would think I gave her a pony! The system worked great, and we were able to get her blood sugars under control.

Let them know that you may be sleepy for a few days, and can only be disturbed when Daddy or another adult says it's ok. (Day one will be from anesthesia, day two and three will be from pain meds)They may feel a little separation anxiety even when you are home, because they are used to you being the central person in the home. Perhaps you can get a few cards and easy activities that you can give them while you are recovering the first few days. (My thought was a cute little bag with a cheapie card and a dollar store activity for each child every day for three days.) At that point you will be a little more like yourself.

Try to prepare some standard meals that can be frozen and microwaved later. Find easy things to prepare for the children, and easy meals for evenings. Frozen lasagna is the easiest thing on earth. Nice meal, stress free.

Depending on how your childcare duties are shared with you and your husband, it may be a good idea to organize one weeks worth of clothes for each child in outfits for each day. I remember getting two kids ready for the day was a lot of work, three is definitley a challenge!

We have a large, diverse family (second marriage Brady Bunch style) and I have began placing disinfecting wipes in each room of the house. It can make cleaning much easier. My kids are much older, so store appropriately. I don't use them every day, but I will break them out when I am sick. (Not to mention during electric outages!) It takes less effort, and allows me to conserve my energy when I need to.

If your family has a schedule, write it down and put it on the fridge for those moments when there is someone helping that may not be super familiar with your routine. (AND allows your hubby to sneak a peek once in a while, so he can get the job done and not feel inadequate ).

ALSO be sure to write down the names, addresses, phone numbers and specialty of every doctor you see. List your allergies, medications, dosage, time you take them (Bedtime, as opposed to "once a day"), and the contact information for whomever you would like to have notified in case of an emergency. Include an emergency sitter, preferably someone who lives close by. PUT TWO copies of this on your refrigerator. One to use at home if you have an unexpected complication, and one to bring with you. I am not implying that you will have complications, but every nurse on the planet will tell you, if your prepare for the worst, it is not going to happen.

Simply try to organize your family as you would if you weren't even there for at least a week. I know you will be, but you will want your rest, and be able to trust that the family will be ok if you are in bed with the door closed. It will also help your hubby. Even the most involved Dad's get a little frayed when they are trying to take care of the kids AND their recovering wife.

If you liked these ideas, I will keep posting when things that are helpful come to mind.



Tammey

Great tips.

Another one I've heard often is lots of pillows for propping you or arms for comfort. Even for car trips to appts and such.

A comfy recliner is often suggested for even sleeping in the first few nights at home, mostly due to difficulty trying to get up & out of a bed post op.

Plus being propped up a bit helps keep any post op swelling down.

easy meals as mentioned

Easy on & off clothes

when I had severe & acute bout of bilateral RSI in 1999 - my kids were a bit older, but they all had to start washing their own clothes. Jeans & T shirts mostly at our house, so pretty easy for them.

Thanks for the tips. I definately need to get my kids as self sufficient as possible. I am thankful I have lots of family and friends that I am sure will help out. Frozen meals is a great idea.

The good thing is that they are kinds used to having to b a little careful around my shoulder and I had a minor hand surgery one year ago. So hopefully they wont b too scared.

Thanks for all the help and keep the ideas and surgery info coming

Can you clarify? how many ounces of water and why lower the sodium intake? thanks so much.

The purpose of lowering your sodium intake is because sodium promotes the retention of water in the body. Most pre packaged food contains huge amounts of sodium, way more than our bodies need. Extra fluid being retained in our system can stress the cardiovascular system over time, and if you are going into a surgery, it is good to help yourself out in every way that you can.

The purpose for increasing fluid intake is to flush toxins and wastes out of your system. This is good to do all the time, but when a person is having surgery, the wastes from the anesthesia will put a little extra burden on our filtration systems. (The liver and the kidneys). So, staying hydrated helps you to heal, by providing enough fluid for your body to clean cells help healthy cells develop, and ultimately repair tissues injured during surgery. There is no set limit, but 6 bottles of water would be 72 oz of water a day. If I recall correctly, the recommended intake of water is 64 oz a day. Most of us don't even come close to that.

Hope that answered your question!

Tam

I currently drink 96 oz a day, so that is good to know. Thank you!

It is possible to drink too much water, and overhydrate yourself. It is called Psychogenic water intoxication, and is usually associated with mental health disorders. 96 oz for an active person doesn't seem to meet that criteria, but it is always a good idea to check with your doc if you are concerned about exactly how much water you should drink daily.



Tam

I used a strapless bra and will do so again next post-op surgery, I highly recommend that. Someone should cut your food for you, too.

I just had the same surgeries done on Nov 29. Since I am only 8 days post op I can only tell you what has helped me this first week. besides a husband straight from heaven.....have lots of pillows to prop your arm and head in an easy recliner. You're not going to want to lay flat for the first week. also lifting your head when reclined is difficult. I still have to use my good arm/hand to lift my head off of the chair sometimes. make sure you have a table or tray within reach to hold meds ,water, tissues, tv mote,phone, etc. be sure you have some button up shirts and jammies! You are not going to want to lift your arms and squeeze into t-shirts. I bought myself several frozen dinners for those nights when my husband just needed a break and didn't feel like cooking. your husband will need to find something to occupy his mind also the first few days as you will be tired and not up and around. My husband would put my advil on the table (out of the bottle)before I went to sleep so I could easily grab them in the middle of the night and not have to struggle to get them. I was only on morphine the first day of surgery. no pain killers other than 6 advil a day since due to nausea and migraines so it has been very painful for me. be sure to discuss all side affects with any pain meds you will be taking. I wish you the best and a speedy recovery!