CRPS- spinal cord stimulator-pregnancy
 

This is my first time visiting this message board. I have been battling CRPS on and off for ten years. I currently take Lyrica, Cymbalta, and Diludid. I broke my ankle 2 times, and 4 years after my ankle healed I had my first episode of CRPS. I am still not 100% confident of the diagnosis. I am 34 years old and would like to have children at some point when I am not on medication. One of my doctors is very aggressively wanting to place a spinal cord stimulator. My brother in law used to work for Boston Scientific as a SCS sales rep, and sold to this particular doctor, and is very against me having one placed. He considers this doctor to be overly ambitious, and just see's me as another dollar sign. Has anyone had a SCS placed before pregnancy, and did it cause complications? What other treatments can anyone recommend? My CRPS episodes have all been triggered due to inflammation in my foot, thus resulting in severe pain, medications, narcotics, physical therapy. I have 3 more sympathetic blocks scheduled in the next three weeks. Any advice on doctors or alternatives would be appreciated!

Hi mlerae!

Welcome to NeuroTalk! Unfortunately I do not have any experience with SCS, BUT there are lots of folks on this board that do. I'm sure you will hear from them! Have you tried the search feature yet?

You've been battling for a while now. So sorry to hear that. You have found a great site here on NT. Tons of info and wonderful people.
I hope you find the info you're looking for! :hug:

Hi and welcome :)

Sorry you've got to be here at all, obviously :rolleyes:, but if you have CRPS this is the place to be. Some great folk here with loads of support..

I haven't had an SCS either, but I don't like the sound of this pushy doc - have you seen a different specialist for a second opinion? I know the pregnancy hormones can cause an easing of some symptoms, but I don't know much about it myself, as I was lucky to have my children before my CRPS. A member called Allanira has just had a baby while dealing with CRPS, and had some good information about everything she dealt with.

There is stuff you can do through pregnancy to help your CRPS without endangering your baby, as I'm sure you know after having it for so long! Sorry if you know this lot, but I'm talking about unperfumed Epsom salts (in the bath, wrapped in a damp cloth on the burning, rubbed in as a paste) - your body really needs the magnesium in it. Vitamin C daily is a good idea too. The other things that really help me are gentle exercise, stretching, massage and meditation. I was very sceptical about how much they could do at first, but over the 2 1/2 years I've had it, they are things that have done the most in terms of controlling (and helping me cope with) the pain.

I take low dose Lyrica, it's the only med that's really helped me. I've tried other pain killers and patches and nothing really happens! This disease is so different for everyone, and some find a med combo that controls things, others don't.

I'd definitely seek a second opinion, you sound as though you aren't sure on the care you're getting, so another point of view would be good. Sadly some docs do have very set ideas on treatments, and you need to get the whole picture before making a serious decision like having an SCS put in.

Take care and I hope you're having a better day today :)

Bram.

Hey I've had CRPS for 10 yrs also and have had 2 successful pregnancies. I didn't have a diagnosis with the first but did with my 2nd. My youngest is a month old on the 23rd. I went almost completely off treatment while pregnant because I didn't want the meds to mess with my LO. I went imto remission with my first son and didn't with my youngest son. So there is a possibility you will too. The research on SCS and pregnancy says not to use it during first trimester because of the possibility of miscarriage. I've done the research when I learned I was pregnant again. I would lower the amount of meds you're taking and see how you feel. I would see if you can mgo I n something besides duladid for break through pain also. I was on lortab 5/325 mg and just took it for when I really needed it. I got off the gabapentin 400mg completely because there wasn't enough research about it and pregnancy. I have restarted treatment just recently. I am now on Lyrica 75 mg 2x a day and getting a ketamine compound cream and neurologic supplement. I would also see if they can put you on something like that if you do get pregnant because it has a lower chance of messing with thebaby. I wish y all the luck in the world. I love my 2 boys even though I really hurt with my new boy. Also make sure if you have a C section they do a very dense block to help with it not spreading to the incision site. Also take vitamin c during and after pregnancy. It is supposed to help it not to spread. Start taking prenatal vitamins now also. I had a nice normal birth with my oldest son. The anesthesiologist was very good when I got my epidural. He was quick, and gave me a very deep block. So no spread when I got an episiotomy for his birth. For my youngest I had a C Section and even though I'm have been taking 6000mg Vitamin c I think I am having spread. Get a 2nd opinion before you have an SCS done. It sounds like this Dr is just out for money not your best interest. There are other treatments you can try before going that route. Having an SCS put in is major surgery. Remember though everyone's CRPS is different. I really do wish you luck and will pray for you that you get everything you want, and need. Oh also if you do decide to have a baby as soon as the baby is born pump your breastmilk. That way you can give the baby your immunity and help the digestive system. My son is on formula now so that I could start treatment again and be there for both boys. My oldest is 2 1/2 yrs and runs around a lot so I need to be able to run and play with him lol.

Thank you
 

Thank you for the opinions and support! I am trying three more sympathetic blocks and seeing other pain management doctors to get there opinion as well. I am just worried about what they can do if I am in remission, and have a relapse due to swelling in my ankle during pregnancy, are any of the typical treatments even an option then? Can they do surgery or blocks during the 9 months and what drugs are possible safe? I am very moody on other pain medications, and felt like oxycodone was likely to be very addictive. I am myself personality wise, with the diludid and don't feel a high. It also lasts longer. I have never had a problem stopping it in the past, but it still worries me. They upped my Lyrica to the highest possible dose of 600mg, and it does seem to help, but does not sound safe for pregnancy. I keep seeing posts about Vitamin C, but none of my doctors have recommended that to me. What and how does that help? How long does it take to recover from SCS surgery? I am 5 foot 5, and about 130 lbs. I don't think there is much room for a stimulator any where except my abdomen, where have most women have them placed? So many questions....sorry. Also curious about how much of the SCS was covered by most peoples insurance. If it costs $100,000, will I owe 20% on most insurance plans. I will not be able to pay $20,000 out of pocket. Again thank you! I can't believe I did not find this site earlier, such a wealth of knowledge.:o

Hi mlerae! Sorry you are having to deal with this mess :( I cannot answer any of the pregnancy questions since I haven't had kids. I can answer SCS questions though. As far as cost goes, not sure what type of health insurance you have but if this a covered procedure, by a covered doctor, your co-insurance would be based on the approved amounts, not the billed amounts. In other words, they may bill the insurance company $52,000 for the equipment, but the insurance company might only approve $21,000. If you have 20% co-insurance for equipment, it would be 20% of the $21,000. Do you have co-insurance for surgery or do you have a co-pay for that? When I had the trial, I had to pay co-insurance for the equipment (approx $1,200) plus the facility and doctor co-pay. When it got to my implant surgery, I did not have to pay anything since I met my out-of-pocket max for the year. The insurance company was billed approx $97,000 and they approved approx $55,000 ($21,000 of that was equipment).

You need to find out your surgical co-pays, co-insurance percentages, out-of-pocket maximums and if you will have to spend the night. My doctor had my spend the night with the implant and revision, but he did it as a 23-hour observation so it would not be considered inpatient.

I had two SCS's implanted (cervical & thoracic) in June 2011, revision on the thoracic one in November 2011. Had everything removed less than two weeks ago. Originally they had placed the battery packs in each butt/hip area. I was having trouble with the thoracic leads migrating that that battery hurting. They moved that battery to my front side, near my ribcage, and put in a paddle lead. The new paddle lead migrated and that battery (front) was twisted and hurting. I had some other issues with them and ended up not being able to use them any longer. I do not regret getting them because they helped me so much in the beginning...they allowed me to be able to get thru another year and a half of work.

I would definitely advise you to get a second opinion. Your doctor sounds like he is pushing this to help himself, not you. I did not experience that feeling with my dr. With your brother-in-law formerly selling these and advising you not to get it...well, I would think that means something there. You should get that second opinion and ask lots of questions, and of course have a trial done if that is the route you choose. Also, I would think placing the battery in the abdomen would be a problem should you get pregnant. As your belly grows, it will move and be pushed against the surface of your skin. Wouldn't think that would be too comfortable.

Wishing you the best,
Nanc
:hug:

Just responding to your Vit C question mlerae :)

Vitamin C taken daily before and after surgery has been proven to reduce the incidence of spread in CRPS patients. I suspect some surgeons and docs don't mention it because compared to the arsenal of meds (they think they have) at their disposal it seems pretty laughable...but it is definitely worth taking. A lot of us take it daily anyway, and it certainly isn't doing any harm.

Your immune system needs vitamin C to keep strong and fight off infections and illness, and it's also quite common for us to not be getting as much as we need.

Take care and have a better day,

Bram.

My pm dr tried pushing a SCS on me for about a year. It bothered me on how he wouldn't let up on it, even when I kept saying no. I have had rsd for almost three years now and had eight nerve blocks. I'm on alot of pain meds, tried pt and accupunture. The NB, med and pt helped a little, but the accupuncture made my rsd spread. I got a second and third and fourth opinion on a SCS from my gp, psychiatrist and neurologist. They all said not to do it for fear of infection which would aggravate my rsd. Some of them also said that some drs just push the SCS for the money they make from it. I know of people who have had it and said it helped them, and I know of some people who have had it and said it didn't help them, but I decided not to get it. It's a personal decision and if I were you I would get a second opinion from another dr, preferably a neurologist. Whatever you decide, I hope that you feel better soon and can go on to have beautiful babies. Take care.

From the research, and people with SCS that I've talked to the battery is placed in the butt, hip area. If it's placed in the abdomen then it will migrate and push hard against your skin and hurt. Also the leads can migrate, and come off. Personally I won't get one. I also won't have a sympathectomy done. It's major surgery either way. The Vitamin C is supposed to keep spreading at bay. You can do warm epsom salt baths to keep swelling at bay also. The magnesium in it will help with the preggo swelling, and help some to prevent pre eclampsia, and will help with the crps swelling. It's funny how a common drug store buy can help so much. Also if you make a bit into a drink will help with preggo constipation, and the constipation from pain meds. Also vitamin d helps some too. I'm now on a neurologic vitamin compound that has a higher dose of vitamin d and folic acid. A lot of meds for CRPS is on the pregnancy drug list as cat c. I would try to lower the amount of meds I was on, and the amount of what ever I stayed on if I was going to have another little goober. I prefer not to have my little goobers addicted to anything at birth. Remember you have a 50 50 chance of going into remission. I did for the first pregnancy but not for the 2nd. Also the more pregnancies, the lower chance of remission. I wish you all the luck. :hug:

pregnancy and rsd
 

I had my scs implated in April of 2010. I gor pregnant May 2012 at the age of 39. I did not use my SCS at all during pregancy. I was also not able to have an epidural during delivery. I delivered my daughter al naturally Feb 2013/ I also have RSD in all my limbs, right ear, and eyes