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SCS & Pregnancy. So scared and depressed

DanianneDDanianne Posts: 31
edited 06/11/2012 - 8:41 AM in Spinal Cord Stimulation
Hello all, :*

I havent posted much but do troll through the forums now and then. I searched for scs and pregnancy, and came up with one person's post who I did PM but got no response. I probably think she doesnt check the site very often. :''(

A bit about me.. I had a car accident 4 years ago and suffered a broken vertebrae, crushed l5 disk along with the l5 nerve root Had a spinal fusion for l5-s1 which later found to not fuse. I had constant right leg pain before the first surgery and intermittently after the first surgery, which then only got worse and worse til it was my whole leg again, constant and very intense. I had a revision of and extention of the fusion to l4, fusing l4 to s1, in April 09. The surgen told me that I was lucky i wasnt paralysed, as the harware moved very freely and the nerves were being "hammered". He had to scrape lots of scare tissue from the bones and nerves he said. I still have leg pain which i've had constant since the a ccident 4 years ago. I've had 20+ injections over the 4 years, with no help from any of them. ~X( Doctor's all say my nerve is damaged, as there doesnt show to be any more inpingement on it in the mris and ct scans. The ct scan actually shows scar tissue on the left l5 nerve but nothing on the right. I am on high doses of oxycontin, percocet, and neurontin, not to mention my constipation meds and bladder meds, due to a neurogenic bladder from nerve damage. Its hard for me to walk on the leg when it hurts so bad, otherwise I find myself limping on it and can barely walk a normal blocks length.

I am only 30 years old and desperately want to have a child with my husband. :X The doctor's are saying that I am a perfect cannidate for the spinal cord stimulator but I am completely afraid.I had 2 second opinion's who both say that scs would be my way to go. One of the doctor's said they dont beleive there is any contraindications with scs and pregnancy after I asked him and he read medtronic's brochure, but the rep from the boston scientific scs company said that usually you need to have the scs removed for pregnany, although some doc's let you leave it in, but have it turned off. :/

I am completely and utterly depressed and feel hopeless. :''( :< :SS I am feeling like i will never be able to have children. I was wondering if anyone has any info on scs and pregnancy and if so what were the pros, the cons and the otherwise that you can share with me, or point me in the direction to where i can get the info. Do you have any suggestions or advice. Please anything and everything you say will help me. I have only found 1 study on the internet about scs and pregnancy so I am very afraid.

If I were allowed to leave it in but turned off, how could I possibly deal with all of this pain? I certainly could not take the tremendous amounts of pain killers or any pain killers that I take now. Please help.

Sincerely and apologetically for not being verbally active in forums,
Thank you so much from the bottom of my sad little heart lol :H >:D< :(

PS, for those that need or want to know. The pain comes from around my right hip area sometimes but is always in my front/outter thigh going to the inner calf and into the top of the foot and all the toes most of the time but does alternate toes occassionally and through the toes into the pads of the foot. It also wraps around from the inner calf to the otter calf and ankle. It comes from my right groin and beihnd my right knee. If i walk or stand too much or sleep a certain way my left thigh and calf also hurt but that is infrequent. :< :(


  • I'm so sorry you are suffering like this. I fully understand this nerve pain as I have it myself. And it is torture. I personally did not find a ton of help with straight narcotics, and could not take any of the seizure meds, such as Neurontin, Lyrica or even Cymbalta due to major reactions.

    I was in horrid pain until I got my SCS a year ago. Then my life changed. My EMG showed acute and chronic S1 nerve damage, as I had been arguing for years. I kept being told "just wait until the nerve heals..........". Well, it didn't.

    I wish I had information on the SCS and pregnancy. I do know that not all folks take less meds while on the SCS. I personally take the same LA meds, but have decreased the breakthrough meds and muscle relaxers, etc.

    My SCS helps so much I am unwilling to turn it off. For example, my bladder is acting up, and is considered "flaccid". I have to bear down to be able to pee. But I do not have to self-cath at this point, thank goodness. But, we don't know if the SCS is affecting it or if it is the nerve damage I already had. I could turn my SCS off for a week to see if the bladder function changes, but I'm unwilling. The SCS helps SO much I'm willing to deal with the flaccid bladder rather than turn it off, even for a bit.

    Instead of the horrid burning/searing pain 24/7, I buzz inside like a massage chair at the salon. So hard to describe. For those that it helps, it can be incredible relief. I still do feel the pain, but it is like it is across the room or something - not right in my face, 24 hours a day.

    Can you contact the SCS companies for info? I'm wondering how 2 little electrical impulses in the mid-back could harm a pregnancy. Do folks with pacemakers not have pregnancies? I honestly don't know. But if so, I'm sure they don't turn them off?

    I wish you well and hope this works for you. You could always do the trial (mandatory anyway) to see if it helps, before worrying aboutt he pregnancy thing. You might find that the SCS doesn't help during the trial.

    I hope you find some relief.

    ( ( HUGS ))

  • At the time I was injured, my partner and I were getting ready to start trying to have a baby. Prior to my trial, I talked with my PM at length about whether or not we would be able to continue down that baby makin' road once I was stable with the SCS. His answer was "absolutely not." His reasoning behind that, in a nutshell, was that there's no research to prove it's harmful, but there's nothing that proves it's safe either.

    If you surf the internet long enough, you'll find clusters of people who have had successful pregnancies, even some who've had multiple pregnancies and pregnancies with multiples. Some say they kept the SCS turned on all the time, other say they kept it turned off during the first or last trimester. There are apparently a fair number of doctors and reps that don't think there's enough risk that it precludes pregnancy, and some that don't think there's enough of a risk to bother talking about it.

    There was a journal article published last year that was a case study on 2 women that had successful pregnancies with the SCS. The only real conclusion the article came to was that if a woman is of child bearing age, doctors should implant the IPG in the back rather than in the abdomen, because if a woman gets pregnant, there's a higher risk of pulling the leads or having to cut the extension as the baby grows and stretches the abdomen.

    It was an extremely difficult decision for me, because I always just sort of assumed I'd be able have all the children I wanted. In the end, I chose to go forward with the SCS because I needed it to salvage the real life I had worked so hard to create. I couldn't make my decision about an image of life that I created in my head, based on hopes, dreams, and wishes.

    I've done extensive research on this topic since my SCS was placed, in part because there's a part of me that doesn't want to let go of the hope that maybe I could actually have children. There's really nothing in the realm of research in any area that can even clearly identify the potential risks to the fetus, whether that's from the stimulation itself, the disruption of the nerve signals in the spinal cord, or as a result of the RF communication between the IPG, remote control, and charger.

    For me personally, until there's more information available, I just can't take a chance with a baby's health. Adoption isn't an area we're interested in pursuing, so that means no children. I don't fight a lot of depression as a direct result of my pain, but this issue does send me down that road fairly frequently.

  • I can say that I would not be alive without my SCS, it helps my legs so much(not fully taking away the pain, but bearable most times.)

    My husband and I had no plans to have any more children at all. But when I realized after my many, many, surgeries and then SCS that pregnancy would be impossible for me, for some reason I went through some crying times for that. It's silly because we didn't plan on more anyway, but just that the possibility was gone bothered me.

    For me, I would never have a child again. I loved being pregnant, but with my meds and the additional strain on my spine-no way. I imagine so much of my time would be bedrest and then I wouldn't be able to take care of my baby.

    I do NOT have research on SCS and pregnancy. However, I know I read studies during one of my pregnancies that intermittent use of TENS units were considered OK.

    I wish you luck in your research, I can't imagine how heart-wrenching this decision is for you.
  • I would contact some of the SCS companies and ask for research material on the subject. Unfortunately I was never able to have children of my own and adopted two wonderful boys...but I did cry many a night to have that child with my husband...in the end my children couldn't be more mine...I wouldn't give up as there are studies all the time. I don't know if they would use the spinal or sub q leads with you...but in my opinion I can't see that it would hurt anything...but I am sure there are things I am not taking into account. Sometimes the Internet is not a good source of information so go to the rep. I wouldn't accept the word of just one company either...I would contact all the companies and gather all the information you can. Then sit down and discuss what you are willing to do and not do. Then talk to your doctor and see what they say. I know I couldn't make it though the day without my SCS. I have let the battery run down on me twice and while I was charging the unit enough to get it turned back on what the worse. I don't let my battery get that run down anymore. I make sure I can make it. I multitask and charge in the car while I am traveling to and from work. So I get a charge every day...but I don't even notice it anymore..like second nature. I hope this helps you. I will ask my ANS rep if there are any studies on pregnancy and SCS she is so good at finding whatever information I request.
  • Sorry I don't have any info or answers for you, but I'm in pretty much the same boat.

    I'm 28, and unfortunately I've been worrying about whether or not I'll be able to have kids for a while, since I have so much trouble with my hips. It's pretty much a given that I would end up on bedrest really quickly. I don't think I even want to consider that the SCS could complicate things even further at this point.

    I hope you find some answers, and that they're the ones you're looking for.
  • Was a poster here for a short while, she had a blog I followed and lost track of. That seems to get easier to do as we age. Being male, I can't say I ever asked the direct question as to if I would be able to get pregnant, I hope not, being a male I don't think I could deal with it, even without the SCS.

    Danimal saw two different doctors for SCS trials and had paddle leads installed specifically because she hoped to have children later. theory being that as the spine moves due to the babies growth the leads will stay in place.

    Like others have said, I don't know that there has been a firm set in the wool decision on babies and SCS. I would say that a baby from an SCS mom would seem to have a better shot than a baby from a pain meds mom?

    Do you have positions you can be comfortable, or survive without pain meds? without an SCS? with limited use Who really knows. Honestly we all want to do the perfect pregnancy, all of us, guys included. our first prenancy started out as twins and at 12 weeks we lost one and wer devastated. The second twin who is our Nate is a second year engineering student on a full scholarship. Just because a pregnancy does not fallow that perfect path does not mean it can't end up at the golden gate.

    Those are my thoughts, I would read everything I could find. I would try the SCS. My sons are 19 & 17 I can not imagine them not being here, we had troubles conceiving, my wife was diabetic, Nate was 3 weeks early by C section yet it is all long behind us now. Don't give up till you are sure you need to.
  • FDA approvals for medical devices falls into 3 categories with implants such as an SCS being a Category III. You can read up on the process if you want, but suffice to say it is lengthy and expensive and most companies have started to back out on going through this process or pushing it to include other activities or demographics. Part of the process for Cat III devices, is lengthy clinical trials. So the chances of finding a woman who is pregnant willing to sign a waiver in order to participate in a clinical trial are very slim. Same goes for the limits of depth in scuba diving. I have been grilled time and time again by my docs and rep, over how deep I dive and whether or not I notice any change in performance of my SCS during or after diving.

    So basically these companies wanted to field a medical device. They did as much as they could within a reasonable amount of time and then placed warnings and disclaimers in regards to conditions and situations that did not go through the clinical trials.

    When I opted to return to scuba diving (the day after my no BLT restrictions were lifted), I had some insurance companies and diving medicine experts from Duke University say that in their opinion any person with an SCS should not dive. Their rationale when questioned, was that an SCS indicates a person suffers from chronic pain. Participating in activities that may exacerbate existing problems or produce symptoms that could be confused with the chronic pain is not prudent.

    So bottom line, everyone will cover their own behinds, regardless if there is any real research data or logical reason for avoiding things like diving below 2 ATMs or pregnancy while using an SCS for pain management.

  • I am 30 and am in the same boat....with the need to have children anyway. I don't have any info either I wish I did, and I have asked and actually recieved some harsh feed back. I don't even have my monthly because of my meds (the doctors say) so I am terrifeied that I may never be able to have children? I can only pray that I get my surgery soon and get off the meds to at least try to conceive before turning 35. I know what you are feeling with wanting a child and even though I can't give you the SCS info I would love to keep in touch with you on the progress of conceiving??
    Good Luck~I hope you find your answers and are well enough to have a healthy and happoy pregnancy and baby!!!! ;)
  • Here is the link to Danimal ( wrambler was posting about her )blog.
    Edited Standards agreement and posting rules
    Please note that Spine-Health reserves the right to edit any messages posted or submitted or e-mailed to the Company and use them for content on the website or in other company materials. No e-mail solicitation or advertising of other companies, products, services, or web sites is permitted in the Spine-Health.com forums. This includes personal blogs with product and service advertisement.

    Edited by Authority Member haglandc

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • her other blog, this is the one she uses the most, I think so anyway. I'm not sure that anywhere in there she mentions any "official" approval for SCS use during pregnancy.

    Edited Standards agreement and posting rules
    Please note that Spine-Health reserves the right to edit any messages posted or submitted or e-mailed to the Company and use them for content on the website or in other company materials. No e-mail solicitation or advertising of other companies, products, services, or web sites is permitted in the Spine-Health.com forums. This includes personal blogs with product and service advertisement.

    Edited by Authority Member haglandc
  • If you wish to send links to personal blogs, please use private message or email.

  • Hi all

    Thank you so very much for your honest and genuine concern and information. I have to admit I cried some while reading some of your posts because I feel we are in this together. I too can not see myself taking that risk with my unborn child which does send me down the road of depression and tears often. The pain, I guess you can say Ive gotten used to, and is just apart of life now, but the thought of what it is taking away from me, is what really gets me down.

    My surgeon is sending me for 1 more MRI to be sure there is nothing structural causing the pain and since after the scs is placed I wont be able to have an MRI. I also went to the behavioral therapist to clear me psychologically for the scs. He says that I have reactive depression now but is fearful that I will go into a major depression after the scs is placed. But still cleared me for it.
    I do also agree with the statements made about research and companies covering their own behinds. There is no way that a pregnant woman is going to freely just sign themselves up for a SCS trial so therefore research on the topic is limited. Just as it is with scuba diving. Although you are having good results while diving, companies are not going to tell you that you can in fear of law suites. I totally agree with you and understand. The same goes for driving while using scs therapy. My mom's friend, who is in her 60's, drives while using scs with no adverse effects but companies are not going to tell her to go ahead and do it.

    I also like the comment made that said is a baby from a scs mom going to be better then a baby from a pain mends mom? And hopefully that is definitely true. I am on such high doses that I would not be able to have a healthy baby like this anyway, so my only hope is that scs rids me of pain meds completely and then we can decide where to go from there. Currently i am unable to be tolerant of the pain with out the meds. I do have positions that make me comfy to a point but I am in sever leg pain with out the meds.
    There was a good point made about cardiac pacemakers and pregnancy and those patients not turning them off. I think the heart being stimulated and the spinal cord being stimulated might be different as far as how the body responds. My PT said that with the SCS the whole abdomen is beind stimulated even if you only feel it in your legs, b/c in essence you are being stimulated or sensations blocked from the waist down. I am doing alot of research though and also emailing the companies that make these devices so hopefully I will have more info soon.

    Thank you for the blog and the private email comments. I really do appreciated everything everyone has said. I know we don't have all the answers but just to talk to people and hear your stories and advice or comments, makes me feel that I am not alone in this. My husband and in-laws are very supportive but sometimes it is just great to hear from people that truly know how I feel and what i go through.

    I was also sent to a website where a study was conducted on a pregnant woman with a cervical SCS placement and she had 2 successful pregnancies while conducting therapy. That does give me hope and I thank you for sending me that website.

    Thank you for danimal's blog as well, I am still shifting through it for some mention of pregnancies but when i find it i will let you know.

    here is a great website Ive found on the scs procedure in case anyone needs to know.

    thanks so much you are so great. I will definitely keep in touch and I always read the forums even if I lack on responses.
  • Danianne said:
    There was a good point made about cardiac pacemakers and pregnancy and those patients not turning them off.
    One thing to keep in mind about comparing SCS to cardiac defibrillators and pacemakers is that the cardiac devices normally don't stimulate the heart constantly.

    Typically, cardiac devices used today are responsive to signals received from the heart. When certain parameters are met (rate too low, rate too high, abnormal rhythms, etc.) the cardiac device activates and sends brief stimulation to correct the situation. Once the situation resolves, the stimulation stops and the device goes back to a monitoring mode mode until the next time it senses an undesirable event.

    In all likelihood, if a person were to required the same level of electrical stimulation to their heart as the SCS sends to our spinal cords, they'd be confined to a hospital and even the most minimal strain on the heart would be life-threatening.

  • Yes you are right Bionic. I guess I wasnt thinking that way when i responded to the post about the cardiac pacers. Thank you for noting that. I did, however, email all 3 of the manufacters who make the spinal cord stiumlators. Boston Scientific, Medtronic, and then St. Jude's medical (who seem to use Medtronic) Apparently I confused myself because I actually sent out 4 emails to places, but regardless the answers were the same. They all say that it has not been tested and the risks are unknown, and the decision would be up to myself and my doctor. So ultimately this is a decision my husband and I are goignto have to make in the future. For now, i do need to think ofthe present, and I can not stay in this level of pain. I would not be able to have a child the way I am now anyway...not on these drugs and in this condition. So the SCS could actually increase my chances, if thought like that, although unless we can have some more hard evidence of a healthy baby, or what effects it has on the fetus, we will not have children. I just cant take that risk. I need to think of the "now" and get myself out ofpain and live for today. It really has helped me so much listening to yall and reading your posts. I am so glad I did. Thank you so much. This topic does bring both me and my husband grief and he actually takes it just as hard as I do at times, although he tries very hard to be strong for me. It's hard to hold my tears back when I sit and ponder and think of "what the future could have been like" but after reading everyone's comments, I realized I am just torturing myself. I still get upset over probably not having children of my own, but I'm trying to ground myself. It is quite hard though.

    Here is a cut andpaste of just Boston Scientific's anser (with my personal info removed):

    Go to Previous message | Go to Next message | Back to MessagesMark as Unread | Print ReplyReply February 24, 2010 8:06 PM
    From: "Zorin, Roman" Add sender to ContactsTo: danianne
    Hi Danielle,

    Thank you for contacting Boston Scientific Neuromodulation.

    Our labeling lists pregnancy under contraindications. There have not been any studies on the subject, regardless of manufacturer. Because of the risks in such study, it is unlikely that it will be carried out any time soon.

    We encourage you to discuss this and/or any other therapy related questions with your physician, as he is the one ultimately responsible for your therapy.

    Roman Zorin

    Technical Support Engineer

    Boston Scientific Neuromodulation



    PRIVACY NOTICE: This e-mail and any files transmitted with it may contain identifiable health information that is subject to protection under state and federal law. This information is intended to be for the use of the individual named above. If you are not the intended recipient, you should not disclose, copy, distribute or use the contents of this e-mail. Please notify the sender immediately by e-mail if you have received this e-mail by mistake and delete this e-mail from your system.

    -----Original Message-----

    From: evewebmasterusa@bsci.com [mailto:evewebmasterusa@bsci.com]

    Sent: Saturday, February 20, 2010 8:46 PM

    To: Boston Scientific

    Subject: ContactUsOther

    The following person contacted BSC with a question or request please respond to them as is appropriate.

    Subject :ContactUs.Other

    First Name :Danielle

    Last Name :
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    Website Domain: USA

    Question/Comment :

    I am considering a spinal cord stiumlator as reccomended my several of my doctors. They use Boston Scientific and I will be placed with the precision device.

    I want to know all the information you have on spinal cord stiumationa and pregnancy. I am 30 and wish to concieve in about 5 years. I want to know risks and precautions, and any studies that you have conducted.

    Please mail me copies of the studies and any and all information you have on the topic. Thanks

    ReplyReply AllMove...carcohDraftsfoodfriendsgeicoJackjokesJoshs Love LettersMarianne WorkNursing HealthOtherPlaneSCSSocial Security
  • I sent D a link, there is a story on Tame the Pain about woman who is expecting her second child, she has an SCS in place.

    I can send the link to anyone who wants it or you can find it in tamethepain the patients name is Robin.
  • On the Medtronic promotional DVD for SCS implants, the woman they highlight had a succeessful pregnancy after getting her stim. You might ask your rep to put you in touch with her. She's not pictured among the patient advocates on their web page though.
  • Mackenzie said:
    On the Medtronic promotional DVD for SCS implants, the woman they highlight had a succeessful pregnancy after getting her stim. You might ask your rep to put you in touch with her. She's not pictured among the patient advocates on their web page though.
    tame the pain.com is Medtronics wesite for patients.
    That's where they had the woman named Robin's story posted. She has one child, they do not say if she had the first before or after the SCS implant. They do say she is expecting her second child and has an SCS now, or when the story went up anyway.
  • check out your PM inbox
  • just wanted to add too, that my engineer hubby keeps reminding me that although I feel tons of buzzing and feel like someone else should be able to feel it if they touch my leg (lol), I am truly getting a teeny tiny itty bitty electrical zap in my mid-spine and my brain is perceiving this as the overall buzzing/massaging.

    So hard to remember that with how I "feel", which is just my brain interpreting that teeny tiny spark. But I am not really buzzing down my legs or anywhere else.

    Mind games! lol

  • Hi Wrambler,Ernurse, mackensie, and cherish, (and all!)

    Thanks so much for your info about tamethepain and robin. Its given me some hope. I havent looked at it yet, I just read your comments now. I actually have a medtronic CD that I did not watch b/c my pain doc wants me to have the Boston Scientific implant. So I will watch medtronics right away! Thanks so much, you guys are so wonderful. Thanks for the support and the friendship, i hope that doesnt sound silly. I've lost many contacts from my recluse tendencies b/c of the pain, so its nice to have an outlet and some people that know what I'm going through. Hope yall's days are going well! Talk again soon!

  • Cheri, I have done the exact same thing with my husband. "Can't you feel that, Scott? I feel like my leg is going to jump off the bed! Can't you feel it?". LOL!! It truly is "all in my head".
  • But......... ;-)

    It's not just about the physical location of the stimulation.

    That little tiny SCS spark works because it "scrambles" the electrical signals that travel up and down our spinal cords. Not all the signals that travel those pathways are pain signals and the SCS doesn't pick and choose just pain signals to scramble. Many of the signals that travel up and down our spinal cord aren't even sensory signals, so we don't necessarily notice when they're inhibited.

    Since success with the SCS is based on patient response (reduction of pain, with limited side effects), there's hasn't been a great deal of research done to determine what non-target electrical signals are being inhibited or blocked entirely. There's also no significant depth of research that addresses which, if any, of those signals are critical to tell our bodies what to do to protect and support a developing fetus.

    True, it's just a small area of stimulation where our electrodes are, but in this instance, size doesn't necessarily matter. An injury at C4 can stop a person from breathing, and it's just a tiny little area too. :?

  • I just wanted to wish you good luck with your choices. I can very much sympathize with where you are at. When I was 31 I found out within one weekend that I needed back surgery and was infertile, so quite the double whammy. I knew I had to take care of my back first but also grieved not being able to give birth to a child. I could have gone the doner egg route but I couldn't imagine carrying a child the way my back was. We ended up adopting our daughter from China and it was the best thing I ever did. I simply can't imagine her not being in my life! Nor could I think of her any more as my daughter.

    Just know that you have to take care of yourself first and formost and then you can deal with the rest of your life. Good luck!
  • Anjuan,

    Thanks so much! That was such a heartfelt story you told me. Thank you for sharing it. If you wouldnt mind, could you private message me some details on international adoption? We have considered china as well for the future. A friend of a friend adopted 2 boys that way and could not be happier. I am so happy that things have worked out for you. Best of luck in the future!

    I had my MRI 2 weeks ago and just got the results. It shows moderate to severe encroatchment on the L5 nerve roots, bilat, but more so on the right. I go to see my surgeon on the 15th to see if he wants to do a foraminotomy and then the implant, or what his thoughts are.

  • Hi all

    I'm writing this from my phone, so forgive the errors. My surgeon had sent me for an mri due to the increasing pain in my leg and bc I couldn't have one after the stimulator. The mri showed severe encroachment bilat more so on right of l5. The surgeon says it could be spurs or large amount of scar tissue. He usually has a surgery sched booked up for 3 to 4 months since he is best in area and one of best in arizona. He is prioritizing surgery on me for 2 weeks, may 5th. He was trying to get me in for Monday (I saw him on thurs) bc of the increasing pain and weakness but my fiance and in laws whom we live with since my 2nd surg last year can't get off work easily that fasr. It can be done its just a pita. Plus I need to donate blood and get labs, all of which would be forgone if we were to do it on Monday.

    He said since there is a mechanical reason for my pain the stimulator won't work or if it does the relief won't last as the conditon progresses.he did however say that its 50/50 chance of relieving all of my pain and I do have multi nerve sypmtoms and have had injuries to the nerves for 4 yrs now and I will probably end up needing a stimulator ina years time.

    The surgeon is plannign on checking the fusion and removving the hardware if the fusion is solid he will leave hardware out. He's going to check and clean out l4 l5 s1 neruforamens and "trace the nerves down". If the fusion is not solid he will refuse and then go anteriorly and put a cage in that way.

    Has anyone had this type of surgery done? What should I expect?

    Thanks all for listening
  • Hello Danianne

    I have read your story and it made me sign up again on the board to write you. I have an SCS and am 33 now. We have been waiting for the right time to have kids. My Dr's here in Ca say it is completely fine for me to get pregnant while having the SCS. Every single one of my Dr's said this, I even got the approval of 4 SCS reps. They said it is best to have the stim limited amount of time or off while in your first trimester. Yes it will hurt having the SCS turned off but I think it out ways the reward it's only for a few weeks. They said just do that and make sure you are off any meds that would hurt the baby. They said this was key.... You would have to have a cesarean so you do not harm your leads, and that I would most likely have to be bed ridden. I did contact boston scientific who is my SCS company and they said the same thing they emailed you that they have not tested it.
    I am just getting to the point where we are thinking we want a baby next year so I am getting off some of my medicine. I hope to have good news to report later. Good luck to you. I wouldn't give up your dream of having kids because of this if you can sacrifice a little pain along the way.
  • Hi it's so sad to see that so many people wanting children with scs yet still no answers. Five years ago after having my little boy by emergency c section I started suffering from severe nerve damaged through my c section scar after a number of years of being on very high medication and getting no better I was refered to a hospital in London England were they gave me an operation to fit a neurostimulator however mine is slightly different as the box is in my abdominal wall and the wires through my c section scar. Now three years on I don't take any medication and I able to walk again. Don't get me wrong I still have pain but the machine as I call it has made it more bearable. Me and my husband desperately want another baby but all my doctors keeps saying is that is no evidence as to what will happen. So was hoping I would find some answers too on here but looks as though everyone is in the same boat. My doctors have said there are many women that have had babies successfully with scs but I can't seem to find them to ask.
  • would have no bearing on having children, since the leads are implanted in your spine, except for the last poster, who has them in her c section scar. In that case, you would need to consult with both an ob and your company who manufactures your specific unit. It may be that due to the increase in size of your abdomen and the length of the wires that an adjustment to the extra lengths may be necessary.
    And if you have a previous c section, they may have to remove the leads temporarily, but that is something you need to discuss with your ob prior to persuing another pregnancy.
  • I see most haven't been on here in awhile, I am new to this, not pregnant, but 30 and around that age where me and my husband want kids soon. Has anyone that was wondering about it ended up pregnant? I read a lot about it to see my options, I know for me, I could live with turning it off because having a baby would mean a lot to me. Some say that they would be on bed rest etc. I would say to talk to a specialist.. Not your PM for things like that necessarily... Me and my hubby have looked into it, I have a "team" of docs already, Maternal fetal medicine, my OB, my PM and my primary.. All will monitor me when I get pregnant. I assumed I would be on bedrest and was surprised that Maternal Fetal Medicine said that there was a good chance I could be pretty normal. I would def turn SCS off to be safe. If I end up pregnant, I will def post again and let any of you know. My dr didnt say that I cannot, Good luck to everyone.
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