I am wondering if any of you out there have kids?

What is it like day to day? How do you cope with doing all the things necessary to child rearing. How is it adding lack of sleep to TOS symptoms?

I can cope now, just. And dont want an operation, but am looking into having extra ribs removed via under the arm. My DR has suggested that he would only operate if my symptoms got worse, or there is a specific vascular problem. but then we discussed having kids and he had this special grimace on his face like- your gonna probably have to do this if you have kids.

How much do you have to modify your daily life with kids? Can you pick them up, change nappies etc?
Thanks for your time,
Anna

Hey arlsandstrom, i do have kids, i am a father of 3 children, ages 7,5, and 2. I'll start by saying everyone's case seems to be a little different, pain levels, tolerance to pain, and just overall symptoms vary. In my case i would say it is a challenge to manage TOS pain and also deal with children, but i would not say it is impossible. I dont know how old or how many children you have, but if they are old enough to understand, i would try and explain to them that you are injured, but obviously in a manner that wouldnt make them worry. I told my kids that daddys arm hurts and i need to take it easy and rest sometimes. The younger they are the harder this is. My 2 year old daughter is constantly saying "daddy uppy" LOL. It kills me that sometimes i cant, but i'll hold her hand instead or have her sit on my lap. If you get the surgery, you really HAVE to take your time to heal. Again you have to explain to the kids that you need to rest, and if they are too young to understand, you need someone to help you. Regardless.....you NEED someone to help you if you have kids. I would say picking the kids up is a no no for a couple weeks after surgery, and you prob for the first week post op wont even be able to if you wanted to. I'm sure you will spend anywhere between 1-3 nights in the hospital after surgery, depending on your pain levels and how your wound is draining. After the first week i started to notice my pain level dropping a tiny bit, but i think at that point you will still be unable to do much. I am two weeks post op today, and i'm able to do some things with the help of pain meds. You can not over do it though. You have to take the time to heal. There were a couple days i did too much and you pay for it big time the next day. Sleeping at night is very difficult for the first week i would say. Lots of pain. I would advise you to sleep in a recliner if you have one, or invest in some comfy chair that you can sleep in upright. Sleeping laying down is not gonna happen. IT HURTS. It is a major surgery, and your body is in shock and needs time to recover. So yes you need to modify your schedule with the kids. You will need help with them for sure the first week. You will be unable to do much at all week 1 but sit in bed. I would try and make sure you have help for at least 2 weeks. I can only explain up to 2 weeks post op, i'm sure others can explain further into recovery. Good Luck to you, and if you decide to get the surgery i pray you have a speedy recovery and a positive outcome. Any further questions feel free to ask.

Thanks Joshua, it is great to have your insight, I hope the recovery continues on up for you.

I don't have kids yet, and I am trying to decide if I need to get the operation done before we try for kids or if I will be able to cope. I can just cope right now, but that is with me doing lots of work that involves no extra strain. I am worried about all th household stuff I would have to do nd also being able to hold and feed babies.

Oh i see. So i would have to say that i wouldnt let TOS be something that stops you from having children. I would say that if you plan on getting surgery any time soon.....I would have the surgery done before you decide to have children. Give yourself time to recover....b/c i couldnt imagine the stress having surgery and having a newborn in the house would bring. If your TOS effects your daily life to the point where, i think you said its JUST under control, and you feel that you will absolutely need surgery at some point, i would say get it done before you have kids. B/C not having kids around would prob allow for a little smoother, less stressful recovery.

I'd say that if you are in it to show the kids love you'll find a way to make it work, and it sounds like you can just get help with some of the logistics.

If you think tos will disrupt major goals in your life though maybe it's time to think about either how you will find solutions to those things or consider checking out the surgery? My thoughts are don't give up your hopes and dreams without a fight.

My biggest fear about having kids is more that I won't be able to get off painkillers while I am still in my thirties. Are you on painkillers and need to consider this at all? It has taken so long to diagnose with such a long recovery and surgeries ahead that I wonder if the biological clock will be on its last stroke by the time a pain managed without medication future arrives (if ever? Banish the thought or be real about the possibility?)

Anyone else out there in this position that can weigh in on this topic?!

I think about it on a daily basis. I want to have another child but keep putting it off until I feel better and I am off off meds. I am beginning realize that might not happen and it sucks.

I have no idea how I would get off the meds. My life has become manageable since I started popping ibuprofen early in the symptom cycle. I am lucky that one dose usually lets me do the physical work to release everything, but I have no idea how I would cope without being able to take meds.

I had an ultra sound this week and it showed complete pulse stop on both sides in certain positions, and I see the vascular surgeon on Thursday of next week. So I guess I will just see how serious he thinks it is. It may make the decision for me if there are real vascular issues. And I will just keep thinking bout it all and mulling it over till I feel I know the way onward. I still think there is more I can do physically to help before surgery. But again, that's if I am just looking after me. Like: lose 8 more kilos, start clinical Pilates ( happening on Monday) look at diet and supplements.

There are only so many hrs in a week, and energy to pursue it all in the midst of pain!

As always best wishes to you all, and thanks for your amazing input.
Xxx
Anna

I had surgery 3 weeks ago and have a 3 year old daughter. It has been tough. Spending 3 days in the hospital and still being told that I can't pick her up has caused a bit of upheaval in our house. My husband took 2 weeks off work to take care of both of us. He's been back to work for a week and I am exhausted. We are trying to decide about adding a second child to our family but that will in no way happen until I am recovered and off all these meds. I am still not allowed to do heavy lifting or housework for another 3 weeks. You really have to rest and be careful post op. The muscle spasms for me are actually worse now than before surgery because the nerves are just so mad right now. If you think you will want to have surgery, I would encourage you to consider doing it before adding kids to the equation because it is way harder when you've got someone else to take care of. Good luck to you!

Hi! Each person can tolerate their symptoms differently. Some pregnant women develop carpal tunnel and other nerve compression syndromes during pregnancy due to the extra fluid. My doctors warned me that I might be susceptible given my history of TOS but I didn't have any added problems during pregnancy. I know several people who had nerve problems during pregnancies.

In my case, there is no way I could have dealt with a baby had the 1st TOS surgery not worked. My 1st child arrived 18 months post op. I was still recovering at this point as I had significant nerve damage and muscle atrophy so we planned everything carefully knowing I didn't have good reliable use of the hand/forearm yet. I did have a 2nd baby a few years later and it was much easier taking care of the 2nd one than the 1st one due to where I was at in recovery. I had surgery on the other side 16 months ago for arterial TOS. This side did not fail because of the 1st side but due to a separate injury and underlying pre-disposition to TOS.

thanks for your story, glad it sounds like it worked out alright for you...were you needing/able to take any kinds of medications while pregnant?