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.

Jenny,

I got pregnant 10 months after having my 1st rib removed. Unfortunately, I also re-tore my ACL within the same week so I had injury related swelling combined with pregnancy water retention from the beginning.

My ob-gyn did not know about TOS nor why they would even remove a 1st rib. She asked about it and when I told her why the rib was removed, her comment was "well, you may need to wear wrist braces for most of the pregnancy". She said that pregnant women tend to experience carpal tunnel and similar nerve compression problems so you could have an increase in pain levels but it didn't happen to me (thankfully). As the pregnancy progressed and excluding the known knee problem, I felt better and better. I had an epidural and labor was quick but I did experience a return of the TOS symptoms - numbness, nerve pain, etc. within a day or two of delivery - so be prepared.

We hired in-house help for the 1st year and finally got him into a daycare facility when he was approaching one (there's a two year wait lists for most good daycares around here so sign up early rather than later). He's doing great and will be three years old in August. You will need lots of help afterwards. I recommend having daycare as you will be able to spend quality time with the baby rather than trying to care for the baby around the clock and suffering for it.

Baby items:
Stroller - you will want an easy to push stroller that doesn't add stress to the shoulder/TOS region. We were given one stroller that I used for not even 10 minutes one day that sent me over the hill for several days. We purchased a jogging stroller that I could push one handed and manuever through obstacles.

Crib - There are cribs that can be managed using one arm. They cost more $ but worth it.

I have vascular TOS on the other side and had shoulder surgery 4 weeks ago hoping that the vascular symptoms subside a bit. So, I'm well versed at having to adapt to limiting my arm usage and positions to not experience a flare in symptoms while taking care of a baby who's now a toddler and running and jumping and . . . .