On December 30, I am scheduled for my SCS trial implant. I found this forum at 2a.m., Saturday morning, in the throws of anxiety as my mind began thinking ahead to the procedure, but moreso, praying it works. I have all of my eggs in the "SCS basket" ~ should it not work, I will bow down, swallow my pride and accept a wheelchair.

I am teetering on the edge. Fighting pain is tiresome. I've had 3 lumbar surgeries in 17 months. Given up on most everything in my life.

I could continue on but I am sure many here understand.

Off now to reseach the forum and see what I can learn!

NanaZ

Welcome nanaz.

Hello nanaZ,

wishing you all the best for your procedure.

If you haven't found it already, here is the link to the
SCS & Pain Pumps forum

I'll leave a couple of others as well.

Spinal Disorders & Back Pain forum

Chronic Pain Forum

Wanting to wish you the best. I hope everything goes smoothly for you and please do what the dr says about post-op. I've read many things here that say that is most important

I have small fiber neuropathy that results in chronic pain. I started seeing a pain mgmt. dr in Oct and he's mentioned once or twice that he thinks I'll get the best pain relief with an SCS.

Please keep us posted on your progress.

Debi in Georgia

Hey, NanaZ,
If it's support you are looking for you have found the right Forum, just as I did a few short weeks ago. The people on here are wonderful.
They don't routinely do this procedure over here, but I do know the daily draining of the Spirit caused by chronic, severe pain. I have also become a recent wheelchair user (not resigned or reduced to). It's no more than a tool, a small personal transport device which our condition deems necessary. It doesn't diminish us. Should you need one, remember this.
However, I trust this will not be the case as your procedure will bring you the relief from pain we all seek. Good luck, I will be thinking of you on the 30th.
Dave.

Hello nanaz,

I'm so sorry to hear about your issues. I read your thoughts about bowing down, swallowing your pride, and accepting a wheelchair. IMO, is the hardest part. But I also feel that there's no reason to swallow your pride to accept a wheelchair.

Three years ago, I was diagnosed with Late Onset Tay-Sachs disease. It's an extremely rare form of a rare disease that normally only affects infants and children. The infantile and juvenile forms of the disease are 100% fatal and there is no cure or real treatment available. Thankfully, Late Onset isn't generally fatal, but it is degenerative and progressive. Right now, whenever I leave the house, I have to use a cane to get around. I'm approaching a time when I may need to use the cane at home too. When it comes to that, I'll deal with it.

The scary part is that there is a very good chance that I'm going to end up in a wheel chair. But nobody knows when that might be. It could be a year or two, maybe five. I have noticed a fairly significant progression of the disease in the past year. I have a feeling that a wheelchair is not more than a year or two off. I've decided that if it comes to that, I'll deal with it then.

I have a number of friends who I have met through an online support group who also have LOTS, and they're all in wheelchairs. One of them passed away a couple years ago, but his girlfriend told me that when he ended up in a chair, it opened up a lot more opportunity for him and he really enjoyed it. It gave him freedom that he hadn't had in a long time.

Thank You for a warm welcome.

I am enjoying what I'm learning here.

Prayers to all.

nanaz,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi nanaz,

Welcome to the forum! We don't live to far away since I live in Central NY. I used to go to Sayre, PA to seem my neurologist, I have had epilepsy for 42 yrs. Now I go to a bigger Epilepsy Center in Rochester, NY and they have been a great help.
I understand where you are coming from my husband has had 2 back surgeries and I have a aunt who had MS and a great uncle who had lyme disease both of them were in a wheelchair for yrs. I also have worked in public school for many yrs. and I have 2 students who are in wheelchairs because they both have cerebal palsy. I know it's hard but don't let being in a wheelchair get the best of you. I had a cousin who was hit by a drunk driver and ended up paralyzed from the neck down when he was in his 30's and he had to stay in a nursing home since he wasn't married and nobody could help him anymore. The best thing to do is to have a positive outlook on your life and take my word you will feel a lot better and be much happier. This is what my aunt did when she had MS and she was in a wheelchair for many yrs. but she didn't let that stop her from having a good time. I wish you only the best of luck and May God Bless You!

Sue