[Silver]

Hi Everyone,
I am a new member and wanted to introduce myself yesterday, however after reading so many of your post I could not see to type through the tears. My deepest sympathy goes out to each and every one that is in so much pain.
My journey began 5 years ago when my neurologist diagnosed me with Post-Polio Syndrome, and after a Zillion test sent me to my !st Neurosurgeon, who wanted to start removing the tumors. The 2nd Neurosurgeon wanted to remove the nerve root mass and untether my cord. The 3rd Neurosurgeon said he did not want to do any surgery. I opted to see a Spine orthopedic group that specializes in therapy without meds.. However they decided I would benefit from a spinal block….
It paralyzed me from the waist down…after lying in a hospital bed for days I began to wiggle a toe. They transferred me to a Re-Hab facility (they were great) and help me tremendously. I was sent home in a wheel chair, and a physical therapist and a home health care nurse that came several times a week.
After months of therapy I am walking again. I thought I wanted the feeling back until I got it…because the trauma caused to my spinal cord the nerve pain is undescrible, plus an added bonus I was left with hypersensitivity.

Needless to say I am afraid of surgery at this time; I’ve been twice since then for therapy. Nothing is working not even Meds…any suggestions..

As for me, after 14 MRI’s 2 Myleograms, 2 Cat Scans and numerous X-rays are the radiologist reports are as follows:
C4-C5 Right Para central disk protrusion
T1- round structure outside left neural foramen
T1-T2 a conus mass of high signal intensity
T-3 Tarlov Cyst
T11-T12 Cystic mass within the distal portion of the cord which is intramedullary. Posterior bulge created by this
L2-L3 Central disc protrusion – disc desicoationonois which flatten the central surface of the thecal sac and compress the L3 nerve root causing left neural foraminal stenosis and lateral recess encroachment an 8mm rounded intrathecal density of the thecal sack represents neurofibroma
L2-L3 asymmetric disc bulge
L3-L4 Facet joint sclerosis and disk bulge
L4-L5 and S1 Facet joint sclerosis and disk bulge
L4 – In the Psoas Muscle a neurofibroma
L5 – Intradural lesion oval is heterogeneous represents a neuofibroma
S1- Nerve root abnormal mass may be neurofibroma this is Intradural
Distal Cord: Cystic mass in the distal cord may represent a syrinx or arachnoid cyst there is also a fibrolipoma of filum terminal.
Low lying Conus (Tethered Cord) The conus is low lying and terminate just above the L3 – L3 level associated with a fibrolipoma of the filum terminale, the conus terminating at the l2 cerebral body.
Abnormal fluid collection lower spinal cord/conus medullaris maybe a syrinx, associated cord atrophy above this level
Asymmetry of the piriformis muscles.
Sorry this was so long…

[Leesa]

Good grief Silver --- You have a MESS of troubles and my heart goes out to you!!! I can only imagine the pain associated with all this. I've been a chronic painer for 26 years, and for most of that time, the pain was NOT controlled at all. It's been only in the last 3 months that my "semi-new" doctor found a combination of meds that have worked pretty good!!! Prior to that, I was basically writhing in pain, losing my hair, in bed, and you know the rest.

I wish I really knew what to suggest. It has been alot of our experiences that surgery begets surgery. It seems that the levels above and below the surgery sites fail due to having to take on more of the load. It's called the "Domino effect" and most doctors don't tell you about this. It happened after each surgery I had and of course my doc never mentioned the probability of that happening. It doesn't seem to matter if it's "regular" surgery or fusion either.

BUT -- if you are in danger of having permanent nerve damage or spinal cord injury or impingement, then surgery IS necessary whether you really want it or not!!! I would talk with my Neuro and make SURE this isn't a possibility. if it IS, then you may have to schedule some surgery.

Hopefully others will chime in with more info and advice. I wish you the very best Silver. You've really been thru the mill! God bless you and PLEASE -- will you keep us posted on what happens and your progress??? We really do care!!! Please take care of yourself. Hugs, Lee

[ginnie]

Welcome to Neuro Talk. I am overly emotional anyway, and I teared up reading your MRI report. I don't ususally do that just reading a report. However Leesa is correct, you have some real hard issues to deal with. I am constantly reminded my own troubles are small. I will keep you on my prayer list. I am not educated enough to make some kind of good response to help you. I am here for you as a friend if ever you need to talk. I wish there were some words of council, advice, something, but I seem to be tounge tied right now. May God hold you in his hands and may your pain become less every day. ginnie

[Silver]

Originally Posted by Leesa

Good grief Silver --- You have a MESS of troubles and my heart goes out to you!!! I can only imagine the pain associated with all this. I've been a chronic painer for 26 years, and for most of that time, the pain was NOT controlled at all. It's been only in the last 3 months that my "semi-new" doctor found a combination of meds that have worked pretty good!!! Prior to that, I was basically writhing in pain, losing my hair, in bed, and you know the rest.

I wish I really knew what to suggest. It has been alot of our experiences that surgery begets surgery. It seems that the levels above and below the surgery sites fail due to having to take on more of the load. It's called the "Domino effect" and most doctors don't tell you about this. It happened after each surgery I had and of course my doc never mentioned the probability of that happening. It doesn't seem to matter if it's "regular" surgery or fusion either.

BUT -- if you are in danger of having permanent nerve damage or spinal cord injury or impingement, then surgery IS necessary whether you really want it or not!!! I would talk with my Neuro and make SURE this isn't a possibility. if it IS, then you may have to schedule some surgery.

Hopefully others will chime in with more info and advice. I wish you the very best Silver. You've really been thru the mill! God bless you and PLEASE -- will you keep us posted on what happens and your progress??? We really do care!!! Please take care of yourself. Hugs, Lee

You don’t know what it means to me to talk someone who actually understands. Most doctors don’t…
I could never image 26 years of living in this type of pain…kuddo’s to you for holding out and pressing forward…you may go through dozens of doctors and try different meds to maintain but remember God is in control…
Have you ever heard of Lumbar Radiofrequency Neurotomy…heat that causes a lesion in a nerve, then it block the pain signals? Just found a doctor locally that preforms this type of procedure…trying to check it out before calling and maybe “wasting” his time and my money… trying other options still… thanks again for your reply…Putting you on my prayer list…

[Silver]

Originally Posted by ginnie

Welcome to Neuro Talk. I am overly emotional anyway, and I teared up reading your MRI report. I don't ususally do that just reading a report. However Leesa is correct, you have some real hard issues to deal with. I am constantly reminded my own troubles are small. I will keep you on my prayer list. I am not educated enough to make some kind of good response to help you. I am here for you as a friend if ever you need to talk. I wish there were some words of council, advice, something, but I seem to be tounge tied right now. May God hold you in his hands and may your pain become less every day. ginnie

Gennie, Its great to know someone listens and cares...I know help will come.
I pull strength from one of my favorite verses 2nd Cor. 12:9 "My Grace is sufficient".
The doctors will tell you that a persons state of mind also has a factor in their physical healing. A kind word, a sympathetic ear, and uplifting quote can make a difference in a persons life. Thanks for being there…
keeping each and everyone of you in my prayers...Silver

[ginnie]

Yes I care. We humans need the comfort of each other. Leesa was also correct in one of the things that happens. In fact I was in touch with my neruo surgeron this a.m. to make sure my neck is strong enough to go fishing for a biggie again. That domino effect is a REAL factor to think about. This happened to me. I am not going to have any more fusions, regardless if the one above I have left fails. No more for ginnie. I know you are looking into all of your options. Hope you get all the pain control you can. NT and me, will be around to help and listen. ginnie

[greeneyes1994]

WOW! You are so strong and brave. I couldn't imagine having all that! I am too a person with a very very very rare story. I joined this site today! I'm a 17 year old girl on Parkinsons disease medication for a brain condition causing my muscles to twist, contract and do all sorts which gave me severe scoliosis! Stay strong! You've overcome so much!

[Leesa]

Silver, I'm sorry I haven't been back, but my son has been in the hospital gravely ill.

What have you decided? Have you made any decisions yet? I've been thinking about you and wondering what was going on. I know you have a lot to think about, and it's scary. Please let me know when you have some time. Sending prayers your way. Hugs, Lee

[ginnie]

Sorry to hear of your sons illness. You will be in my thoughts and prayers with your son. I hope he gets well soon. ginnie

[Silver]

I am so sorry to hear about your son Leesa, I'll keep you both in my prayers. I've been trying to keep up with the new post...but ...running to doctors again...The two procedures I thought of having I've decided not to do it. I found a good site on both and the complicataions and reaccurance is so high, plus alot end up in more pain than before. My Primary Care Physician agrees, to just treat (medications) right now, however we have found more cysts but at least they are just in my kidneys, I go back to the doctor the 30th for that. I know things are going to get better, expecially once I get this infections out of my body and quit having these terrible chills, living under an elelctric blanket this pass week.
Leesa, Ginnie, when I win the lottery, I will fly us over to see greeneyes 1994, and we will have a girls night out...
everyone take care and remember that God is in control, he will never leave us or forsake us and will lift us up upon wings of eagles. ...Silver