Hello from Central PA
 

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. :Wave-Hello:

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

Nice to meet you nanaz :)
 

Wishing You Luck
 

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.

Greetings!!
 

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