Alright, I've been on these boards a LONG time, albeit I've been pretty quiet lately. I'm REALLY relying on some good feedback this time, though...

I'm considering pregnancy.

So, I need to hear from experienced moms with TOS. Preferrably, those of you TOS moms who were diagnosed or at least having symptoms BEFORE getting pregnant. And I want to know everything good and bad that happened to your TOS body when it became your pregnant TOS body. I want to know how you coped/managed/etc. I want to know EVERYTHING.

Then tell me yes, I should do it, or slap me silly and scream at me, "What, are you kidding!?"

If it really, truly made your body permanently worse, I really need to know! I'm all about not making my body permanently worse, because I'm totally functional right now the way I am, and I know I'm pretty lucky where that is concerned. The thought of making this permanently worse scares the heck out of me. My career is finally getting of the ground, I've got lots of bills and debts to pay... I can't really afford to be incapacitated.

In case you're curious - I'm 31 years old. Thinking of getting pregnant in September so that I can have a baby next June when I'm on summer break. I've got bilateral "potpouri" TOS - So, it's nerves, vessels, arteries... Whatever decides to be pinched for the day, and whatever side it decides to be pinched on. I work out daily to avoid complete and total TOS body failure. I'm highly functional. I have a good handful of days a year where I just can't stand it, and I barely get out of bed; but, other than that, I'm a pretty tough cookie. I've got a GREAT doctor who has a gift for "fixing" me when things get really bad. I'm a college professor, working a full-time load spread across 2-3 colleges. I've been in the job for a good year, so I'm comfortable. Been married a long time, been with my husband forever. He's supportive and will do anything I ask when I need help with things, but he's not good at helping me get rid of my pain -- I'm sort of on my own with the muscle balls. My daily pain level averages about a 4 lately. It flares up and down to around a 6 often. And I get the periodic 7-10 level stuff here and there. (I usually deserve it because I do stupid things I shouldn't do.)

Lately I've weaned myself off of Darvocet and Soma (my drugs of choice for the last 12 years or so - they're both pregnancy category "C," so not baby-friendly). I'm currently on Advil and Tylenol (they're both category "B" - the safest in the USA), and I'm actually doing okay. I probably take 1-4 pills a day - rarely can go a day without at least one tylenol. I'm going to switch to a pregnancy category "B" muscle relaxant like Flexeril or Skelaxin this week, just to take when I think I need it.

My doctor thinks I'll be just fine, but it doesn't surprise me that he would blow it off like it's nothing. He did offer to continue our osteopathic treatments through the pregnancy, but he's also hard to get in with, so it's not as glorious as it sounds. My chiropractor also thinks I'll be okay. But one of my favorite osteopath med students who has spent a lot of time working on me, fixing my stupid body, warned me after his OB rotation to never get pregnant.

I figured my best bet is to hear from those of you who have actually done this, to find out what I should expect.

I've done a search on here but it's really not turning up anything good. I'm not a fan of the search engine on this site.

So, please give me some info and advice! Should I, or shouldn't I?

~ Jenny

Wow Jenny, you are so wise for doing research on this subject BEFORE you commit!

I had symptoms off and on my whole life before I ever heard of TOS! I knew I had cervical ribs, but was told it 'may' never bother me. Just be sure to wear a seatbelt as a chest impact could cause lung puncture.

With my 1st pregnancy, I suffered from baby insisting that stepping on my lungs was fun! Especially with a full tummy, I had scary breathing episodes. After delivery... about a month after, I became very ill. Swelling just above rt collar bone, vomiting every 20 min, extreme tiredness. At the time my Drs had no clue. They sent me to an oncologist assuming I had cancer!! (big dummies). Now I am certain that the delivery and carrying of baby (and diaper bags, car seats, etc) caused some serious irritation to ...? long thoracic nerve? not sure, but some autonomic nerve. After 6 weeks of bedrest and 8 weeks of no work it all resolved.

6 months later with my 2nd pregnancy, the vomiting, breathing issues and soreness came the day before delivery. It resolved itself about a week after she was born.

My line of work was very physical, so I continued to get migraines, muscle spasms off and on for the next 10 years before it became intolerable. That's when I discovered TOS.

I'd say if you have a helper, a DAILY helper, you should be OK.

My kids are almost 20 and 18 now. The youngest one... gets the migraines.... and I'm so afraid she might have the cervical ribs. You may want to consider genetic testing before you get preggers. Do we want to risk passing this along to our kids? Or is the likelyhood of passing it on so remote that it's moot? This I'd love to know!

best of luck to you!
Anne

Thanks Anne.

I don't have cervical ribs, just a very narrow thoracic cavity. And, yes, most of the females in my family have the narrowness, and my mom has a few little TOS symtpoms from time to time, but nobody in the family has actual TOS like I do.

Interesting about the breathing -- I have such a hard time, especially in the last couple of years, with breathing. In fact, today, before I read your post, I was having some trouble and I had the thought, "How much worse will this be if I get pregnant?" Funny you should then mention it. Anyway - Another thing to discuss with the doctor.

I appreciate any response I get - Everything gets you thinking. I'm glad to hear you think I'll be okay, and that your symptoms did subside.

~ Jenny

Some of the general factors during pregnancy.
{that I recall anyway - it's been 18 yrs since LOL}
I didn't have RSI/TOS or any health problems back then though.

swelling
increased blood flow
increased weight
increased breast size
looser joints /tendons
balance may be off

well my mind just went blank on any more for that list.

One thing I would really think about , is if things get worse at any time in the future, would you be able get by with possibly only one income or long periods of one income??

And do you have family/friends supportive and close by just in case you need help with the baby in the above scenario.

If your mother, or her sisters had difficult pregnancies or such, or very large babies that might be something to think about too.

But overall barring any complications...I think taking care of a baby and then toddler would be more of a possible "cause factor" than the actual pregnancy..
carrying, meals, laundry picking up the messes....

Hi jenny,
I too have been thinking of this too. I am 35 this July and thinking getting a tad old but getting married in June 2010. I have been worried about coming off all my meds...all of which are super toxic to me nevermind a baby!!

I worry about the AFTER BIRTH CARE!!!!! How do you hold and carry a baby and breast feed and all that business!!! I think okay i could handle the pregnancy if I did NOTHING my daily pain scale is around a 6-7 going to 9 with migrianes and other idiotic things I try to do like make cards and scrapbook!

I worry about coming off all the meds...that will take time. I really worry about how I will handle a toddler running around!!!! how on earth do I keep up. I figure I'd need a nanny at the least or help of some sort...my folks and my DH folks are in another province over 3000km away! so not getting help from them.....I'd worry about my breasts getting bigger my weight blossoming.....my arm swelling with more fluid on board the body.....hmmmm what else have I thouhgt of??? OH YEAH THE BIRTH!!! you would likely need to book a C-section as pushing would be out of the question!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! TOTALLY OUT OF THE QUESTION!!!`
hope you got that point....even with epidural you have to push and what muscles do you use....you got it all the ones you'd wreck and are the TOS ones!!!!!

that's my take on it as much as I DO want to do it I worry.....a lot..... even with adoption or a surrogate.......still care of an infant is a LOT of HARD work!!!!

hope some of MY concerns help answer your questions.
much love,
Victoira

Yes it is a lot of hard work. things has to get done. I experienced increased pain with my grandson. He needed to be held and walked at times. this caused increase in pain.

I love him dearly, but he would just visit. I don't know how you could do everything that needs to be done with bad arms???

I would definitely say a C-section too.

as far as going off those meds, I couldn't have at my worst. If the next pill killed me, I had to take it to get by.

Some autoimmune disease go into remission when pregnant. I do not think TOS would be pregnancy-friendly...

I would suggest you baby-sit for a couple of days for your niece or nephew. That will let you know if you can do it. I probably could do it today at my current status with TOS but I might also relapse too. You would have to have a good support team to help you and baby. Babies are precious... and demanding.

I'm surprised. You guys aren't scaring me too much yet. I know the after care is going to be miserable. I remember several years ago reading about how that part is worse than the actual pregnancy.

At least at that point (after the birth) I can employ the help of others. My biggest concern is the actual pregnancy, because I'm pretty much on my own with that. I can't undo it, and it's not like I can hand it off to my husband or mom when I'm not feeling good. My husband knows what he's getting himself into. He knows I can't carry anything, and he's ready to take up the slack. And my mom is going to be awesome, I just know it. She's retiring this year and has already said she'll babysit and help with everything! She lives less than 2 miles away.

Pushing vs. C Section: I was always a fan of the C Section for TOSers, until I started really, seriously thinking about this. Now I'm thinking that getting an epidural and pushing is the way to go. It's a much quicker recovery. I want to be up on my feet, exercising, as quickly as I possibly can. The more I get up and move, the better I feel. And I really need my abs to work. If I end up bed-ridden, my arms will shrivel up and I'll have more problems. But, I hear you -- the whole tucking the chin in and bearing down and pushing thing... Ugh. I can't even tuck my chin to my chest comfortably right now on a normal day with no pushing.

So I think I'm going to make sure I have the option to do the C Section. If the baby seems really large, or if I'm not feeling up to it around the time I am due, then I want to be able to make that decision, at least. My mom had very small babies, premature both times, and pushed them out in a matter of seconds. I'm hoping it goes that way for me, too.

My chiro told me, and I think I've read this here in the past, too, that everything in our bodies expands when we get pregnant, so there's a chance I might feel less TOS symptoms. Wouldn't that be nice.

I can't believe I'm seriously thinking about this.

~ Jenny

Since everyone is different, it is hard to know how it will be for you.
My daughter has problems with her left side / and terrible fibromyalgia.
She was 37 when she had her first baby. During pregnancy she occasionally took pain meds (codeine only). She had to take a lot of hormones to get pregnant (and the first few months). The doctor suggested hormones might even help with the pain. Some symptoms, like pain, improved significantly during the pregnancy. Other symptoms worsened. She had a C-section - because she never went into labor after her water broke. Her pain tolerance is so high she never even needed any pain meds after delivery. Things just went her way - she had a small baby and is now - at a year old - very skinny. She's blessed that - so far - her husband has been the one who cares for the baby for the first 1-2 hours before he goes to work. A few times she's had to call him home to help care for the toddler. Has it been easy? No, but with family and friends things have worked out.
I wish you the best with whatever you decide.

hey jenny - this is a topic that has been on my mind recently - although im not near the stage that i will become pregnant, i know i will have children one day and the thought of all the pushing is the only thing that worries me about pregnancy....a c-section would be my likely decision - my neck is so weak that my head often feels too heavy so could imagine that the impact pushing would have on my upper body could implicate on my ability to care for the baby afterwards...

like yourself im fairly functional at present - 4 years ago was a different situation and was forced out of my office job - i wouldnt want to put myself in that situation again my trying a natural delivery!

i wish you all the best with your decision, im hoping that the unconditional love for my future child would make any pain a little more bearable.....

Hi,
I really have an issue with the pushing and the epidural part u talk about!!!!
I can't see a tos person pushing with tos....you will KILL your scalenes and your neck with all the strain....epidural only stops the pain below....yes recovery is better but if your Mom is gonna help then no worries!!!

You really need to consider the possibility that you could make yourself much much worse by pushing and using all of your upper muscles when you push as you will be tense and stressed out to the max....BAD IDEA for anyone with TOS...

my 2 cents!
I would NEVER EVER CONSIDER WRECKING MY NECK IN THIS WAY!!!

take care
love an hugs,
Victoria

ps....any meds at early 8 week conception is a BAD idea...you need to be prepared to be on NO meds if you want a healthy non injured baby from the meds.

ALL meds effect a fetus! So tylenol, anything even caffine will effect a baby so you need to be ready to be off ALL drugs if you want a healthy happy baby...I would take nothing no matter the pregnancy class on the drug.....drug companies have not done enough testing on HUMANS to know what the drug will do to a developing fetus....also my 2 cents as a nurse who knows drugs!
love and hugs again
Victoria