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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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11-29-2012, 06:47 PM | #1 | ||
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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. |
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11-29-2012, 09:17 PM | #2 | |||
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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 |
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"Thanks for this!" says: | Iris (12-01-2012) |
11-29-2012, 09:52 PM | #3 | |||
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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.
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"Thanks for this!" says: | Iris (12-01-2012) |
11-29-2012, 09:58 PM | #4 | ||
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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 |
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12-01-2012, 11:36 AM | #5 | ||
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Can you clarify? how many ounces of water and why lower the sodium intake? thanks so much.
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12-01-2012, 06:06 PM | #6 | |||
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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 |
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"Thanks for this!" says: | Iris (12-02-2012) |
12-02-2012, 03:59 PM | #7 | ||
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12-08-2012, 05:08 PM | #8 | ||
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12-13-2012, 02:45 PM | #9 | ||
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My 17 year old daughter had same surgery with Dr. Thompson on Tuesday, December 3rd. She went into surgery at 7:35 am and had about an hour prep time. The nurse called to inform me that they started the surgery at 8:45 and I got another call at 10:30 informing me the muscles and rib were removed. Dr. Thompson called me at 12 to give me the details of my daughter's status. Both of her scalene muscles were very large for her size and she had scarring at her nerve roots. We were able to visit her about 45 minutes to an hour later.
Tips: You will need to provide a urine sample. (my daughter went earlier and could not provide a sample - think it was the reason it took them awhile longer to start the operation. Take stool softeners NOW. OxyCotin really messed with my daughter's constitution. My daughter did not like the taste of the water from the plastic cup they provided. She had an easier time drinking from bottled water. My daughter really appreciated having a headband to keep her hair out of her face. You will be given ice chips then jello and other clear liquids until they feel like you can handle solid food. You will be on a low fat diet. They will be monitoring how the solids affect your drain bulb which will in turn determine when you can be released. Your throat will be sore from the tube and you may feel nauseous from all the medicine and anesthesia. They have medicine for it. The nurses come in every 2 hours the first day or two then every 4 hours after that. My daughter had a hard time on Friday (3 day post-op.) They re-catheterized her and put her back on the IV. She felt nauseous and had a hard time swallowing her medicine and would not eat. We also put her back on the medications she had been taking for over a year (Cymbalta, Lyrica and Nortripyline). She turned the corner within 6 hours. Don't know which variable worked. Dr. Thompson does not typically release patients over the weekend. I felt very comfortable having her stay. She was released Monday morning and we visited Dr. Thompson in his office early afternoon and they removed the drain bulb and took x-rays. You are asked to stay in-town (nearby) for 24 hours to make sure there are no complications from the drain site. We left for Kansas City (4 hours drive) Tuesday morning. We walked the dogs Wednesday morning. She is eating, texting and visiting with friends. She is sore from the surgery but can use her arm and hand with no problem. Constipation had been her main problem since we've been home. She is on OxyCotin slow release, OxyCotin 5mg as needed and Robaxin along with tylenol, ibuprofen and senna. Pain is not really an issue. My biggest advice is to make sure you have help (you are not suppose to lift anything over 5 lbs.) and not be so hard on yourself. Let people help you and it is O.K. to be in chaos for a couple of weeks. Just simplify you life, rest and enjoy your children. |
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