I have noticed through several posts, and by reading personal profiles, that I am not the only one suffering this. Please share all you can with us about your particular challenges and how you cope with the pain and pressure.
My stenosis is the tail bone, it is closing up and curling, when this is severe, there is no pain like it.
I didn't know that others suffer with this...I have cervical stenosis and thought that it was just something that I had to deal with. I am debating whether or not to have surgery to correct it or to just continue with additional steriods and pain meds to deal with it. It has caused additional numbness on my left side and everyone is encouraging me to go forth with the surgery but I'm not sure that is something that I'm ready to do. I had throat surgery for thyroid cancer and I'm not sure if I'm ready to have my neck worked on again. Trying not to let the fear cause me to make the wrong decision.
I have cervical spondylosis (osteoarthritis) and cervical stenosis all come under the same factor.
Well being born with it never helped and in my 20s when they found out they could have plated my back from a child...i'm done my spine in twice fractured it and now it's just lying together and it fills of fluid like a spongie affect and really aches there's only lying down that relieves the fluid, i only have two vertebra supporting my neck and the pain stiffens my neck besides sending pain either into my head or shoulders, one vertebra is damaged in the middle of my back which gives off pure back pain....i've not had a MRI scan on my back since i was diagnosed to double check if the spinal nerve was being touched at that time it was'nt.
All i was told was never to gain weight and keep thin because a bad seizure and fall could permanentley course paralization for the rest of my life and so far i've been lucky.
It's all hard and the pain besides but there's not much more we can do but to cope and fight daily.
The paracetamol i take are for that besides the swelling off the lupus.
I have surely considered this too, and talked about it at great lengths with the group on Psoriatic Arthritis, as well as my DC and many MDs.
If I ever even think it will help me again I will return to Johns Hopkins and University of MD, but as it stands at JH, the asst prof told me it would only make me worse, and the head of Adult ortho trauma at UM told me to swim, that if I kept looking for a quick fix I would surely find one. Sometimes you have no choice at all. That was years ago, before stenosis was discovered, but they would be my guys if ever...
Now I cannot know the condition of your neck, nor do I profess to be a Doc, but I did want to relay that to you.
I surely understand your reluctance after already going through the thyroid surgery. So sorry that was also there for you to deal with.
I think you are a very wise woman to think it through.
Hugs to you,
SK
I have talked extensively with another and my DC so far about the possiblilties of a Spinal stimulator for pain, problem is that I cannot tolerate TENS, shoots me off the table, this is similar and an implant! But I realize that your thoughts may be more about mobility than pain, mine may be too, perhaps sooner than I think! Thanks for discussing this with me!
Your suffering just breaks my heart! I just wish I could take some of that pain from you, you never deserve this.
It is a shame we live so far apart, wish I could at least bring you tea and crumpets or biscuits, and flowers and vegetables from our little gardens, but I am glad to have you as a friend just the same.
Spinal pain is some of the worst out there and my heart goes out to all of you. I have stenosis in my L5 vertebrae and it's causing burning, stabbing pain and significant weakness in my right leg. Up until just recently it was just the leg pain but now I'm starting to have back pain. I don't want to try surgery at this point but if it keeps getting worse. I've been using ice to help with the pain so far. It kind of works.
Has anyone gone through the surgery? Do you take pain meds?
I have a lot of problems with L4, L5, no picnic, is it? Right at the Sacral nerves! OOOH!!! Then the tail bone curling of course is S4, S5! I can ONLY tolerate heat, I take Oxiprozin as an NSAI, Lyrica for Sciatica, and Opana for pain, though my GP says take as maintence, I only take when pain is intractable. Also take Enblrel, 12 weeks in, helps, but only so much, too much damage, but if it slows the rest, still take!!
I was talking to NuDirection about surgery, at top of page.
Oh Susan...bless you mate your such a lovely friend.
Yes i go through alot but as the saying goes and i believe in it strong "Life carries on" and all we can do is deal with what hits we...i've learnt that lesson hard in life but it's right but supporting one another does more for us than being rejected by ones who are surposed to love us.
Love you loads Terri xxxx
SK said:
My dear friend Terri,
Your suffering just breaks my heart! I just wish I could take some of that pain from you, you never deserve this.
It is a shame we live so far apart, wish I could at least bring you tea and crumpets or biscuits, and flowers and vegetables from our little gardens, but I am glad to have you as a friend just the same.
Seems that in all the medical records forwarded to my Rheumatologist, he did not know I had Spinal Stenosis, and he told me today it was caused by the Psoriatic Arthritis. I am one of those people who want to know as many answers to the "what, when, where, why, how, and what are we going to do about it" as I can.
So at least I know the "where it came from/what caused it part"! I did tell him I thought the Enbrel may be helping it a bit, along with all the other things, but that it was Summer, warm, the true test will be the long cold winter when I suffer most!
Your like myself wanting answers till the end and so you should no anyway but i've crossed some specialist over the years that won't put themselves forward with these answers...worried because of their profession but i do hope you get your answers mate.
You will suffer in winter and no use hiding the fact...as any form of arthritis is like bad scars we carry come winter you know about it.
He said the idea of the Spinal Stimulator is OUT, too many infections!! He has dealt with this too often. Said I could not be on Enbrel or any Biologics with this implant, so we'll forget that idea.
It's on the x-rays, the Dr who read them, never saw it, my DC did, so I also took them to my GP, and he confirmed. This was when you were still handed the large 'sheet' x-rays, so it has been a while, just can't wait to see the next ones!
Tez_20 said:
Hello Susan,
Your like myself wanting answers till the end and so you should no anyway but i've crossed some specialist over the years that won't put themselves forward with these answers...worried because of their profession but i do hope you get your answers mate.
You will suffer in winter and no use hiding the fact...as any form of arthritis is like bad scars we carry come winter you know about it.
Whatever the specialist goes with when you do have it....i just hope everything goes ok and no complications. Love Terri xxx SK said:
He said the idea of the Spinal Stimulator is OUT, too many infections!! He has dealt with this too often. Said I could not be on Enbrel or any Biologics with this implant, so we'll forget that idea.
Thanks Terri, good information, who knows what I will have to go through with this. The Rheum thought the stenosis was in my neck because of my numb hands and fingers... so who knows what is going on there of late. I am still looking for more info on what the closing of the tail bone is getting, my legs, I guess!
I'll get there, today is day 7 with at least one grandkid, so not much time for research! I have had so much fun with him, but he just does not understand why Mim can't really 'cut it' anymore, but still wants to be with me! He is 9, I have to enjoy him while I still have some 'cool' credentials! In a few more years I will be totally BORING!!
Your welcome mate...i thought it would help you and other member's.
Stenosis just affect you neck, it affects mine well and give me some jib...i've been looking for the tail bone for you and i hope these couple of links help and it causes some trouble alone...chrsit you are going through the wars mate.
Oh bless you one grandkid and loads of research...i bet you have and also the enjoyful bath times.lol, yes mate make the most of it because none of we never know what's around the corner...i can't imagine you boring mate not unless this lot and pain takes you down that road. xxx