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update--Degenerative Spinal Stenosis & LESI update--Degenerative Spinal Stenosis & LESI

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  #1  
Unread 09-21-2005, 08:14 AM
update--Degenerative Spinal Stenosis & LESI

Just wanted all you ladies that were following my pain management and injection story that I now have a definitive diagnosis and treatment plan for my pain.
Through a series of tests, including an MRI, I found out that I have degenerative spinal stenosis. It's apparantley rare in people as young as I am (23), but it has a lot to do with my hysterectomy, menopause, and multiple abdominal surgeries as well as the Lupron and other hormonal treatments I was given from age 18 to age 23. This is kind of a hard pill to swallow, since you all know what "degenerative" means. I can live with it, but it's not going to get better. At least I'm being managed with pain pills, but even that I cannot continue forever.
The good news in my treatment plan is I had my first Lumbar Epidural Spinal Injection yesterday...it hurt like hell--even worse than the nerve blocks. But this morning was the first morning I woke up with out pain. And so far, sitting, which was unbearable, it fine too.
I'm not getting my hopes up, but I'm so glad I know what's going on, and what's actually causing my bladder and bowels problems and pain. It's all related to my spinal cord and my nerves--I never would have guessed that. I know I can handle this....it's just quite a shift, you know? For all this time I've been focused on being a GYN patient. This is new...and different. Although it makes me a little sad to know that I went through all that crap with the endo and everything, and this is my reward???? I know I should just be glad the endo's gone, but I'm a little angry that this is the payoff that I'm going to have to live with for the rest of my life!
But I'll be just fine!
Just wanted to touch base, and thank you girls for everything. If anyone is having similar experiences, please feel free to contactme and I'll answer any questions that I can--I've done a lot of research so I'm pretty up on this stuff!
Love, Christina
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  #2  
Unread 09-21-2005, 01:07 PM
update--Degenerative Spinal Stenosis & LESI

(((Christina)))

I can so relate to this one. I too have spinal canal stenosis with the addition of bone thinning and the onset of osteoporosis. In addition I have a protruding disc sitting on the sciatic nerve which is really fun (not). I am older than you (47). The neurosurgeon said he doesn't normally see backs like mine in someone under 70 years old. I have another medical condition called sarcoidosis which is leeching the good calcium out of my bones, thus the bone thinning and osteo. The stenosis itself is just plan bad luck and not linked to anything else in my case.

I am having a decompression spinal laminectomy performed next Tuesday 27th on the 2-3, 3-4 and 4-5 sections of my spine. I am so looking forward to being on the other side of this. Tuesday is the 5th attempt at doing this surgery. The hospital cancelled twice, blood pressure was through the roof the third time and before the fourth attempt I had a heart attack. So this has been quite a year for me, one that I am in no hurry to repeat.

Just wanted to let you know you aren't alone.

Hugs and regards
  #3  
Unread 09-21-2005, 06:54 PM
update--Degenerative Spinal Stenosis & LESI

Christina
Hello. I hate to hear you are having these problems due to your back. I am so glad to find somebody who can relate to me.
I have been to colon rectal dr and gastro dr and abdominal pain dr, etc looking for answers to my bowel and bladder problems. I had so many tests done and nobody could help me. I had my tvt and anterior repair last week. Evidently the positioning of my legs threw my back off. I was in terrible pain. I had been diagnosed with bulging discs and sciatica 6 years ago. I just lived with the pain. It has gotten so bad lately. On top of everything I can't feel any sensation in my vagina. I feel no pain from either of my prolapse surgeries. My surgeon ordered me a MRI while I was in the hospital. It came back saying I had a protruding disc and a herniated disc right under it. The dura sac has blood or disc material in in deforming the s1 root sleeve and pushing in to the neural foramen. There was something about the right side of the spinal cord at L4-L5, but I don't remember what it was. MY dr. said this could be causing the bowel and bladder issues. I hate to face this, but at the same time as soooooo glad to finally find a cause of all of these things.
I see a neuro surgeon on Oct. 14th. I will know then what my treatment will be. I also have arthritis in the facets at L4-5. I am borderline for osteo and supposably menopausal now. I am 43 years old.
I am wondering if the surgeon will say I need to have surgery. I think it is too late for PT to help me.
Good luck with your surgery Gail. I hope this is your last and your recovery goes great!!

Peggy
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  #4  
Unread 09-21-2005, 08:41 PM
update--Degenerative Spinal Stenosis & LESI

Christina,

I just wanted to let you know how much we all care - and that we are here anytime you need to chat. I know you must seem a little overwhelmed. Especially when the diagnosis keep adding up. It's great that you are educating yourself on everything - I truly believe that knowledge is power! And it is much easier to seek treatment when we can be an active participant in our treatment plan. I'm not that much older than you (29) - and I understand the frustration of being young, and feeling like you are "the only one" in your peer group going through all this turmoil. I never met anyone that could even relate to my medical history until I found HS. And the women here are truly inspiring. I know that you will get through this latest "setback". You are a fighter - and you are an amazing woman. Take strength from these women that have been where you are. Learn all you can from them. And most importantly, keep an open line of communication with your medical team.

Gail - I hope your surgery is successful this go round! And I pray that you will not have any further complications! I hope you have mended from your MI - I can't imagine how terrifying that must have been for you and your family....especially with you being so young! Take care of yourself!

Peggy - I hope you are finally able to get the answers you so desperately deserve! Please allow yourself to heal - mentally and physically. I know it is all very taxing on your emotions. For as long as I've been on this site, you have always had kind words and tons of hugs for everyone around you. You are truly a wonderful lady!

Wishing all three of you the very best and sending out lots of gentle s

Cortney
  #5  
Unread 09-24-2005, 08:11 PM
update--Degenerative Spinal Stenosis & LESI

I am so sorry sweetie that you have this diagnoses. While I don't have it as bad as you, I too have a stenosis between 3 discs and I also have degenerative disc disease almost througout my entire spine. Found out that part can be hereditary--my dad has it and his started in his 30's too. He is now 59 and still in the military, so it isn't holding him back too bad. I wish there was more that I could say or do for you!
Many hugs girlfriend!
  #6  
Unread 09-27-2005, 06:32 AM
update--Degenerative Spinal Stenosis & LESI

Thank you girls so much for responding. Although I know things could be a lot worse, it's difficult to hear a diagnosis like this, with the word "degenerative" in front of it at my age...but at least I have an angel of a doctor who is doing everything in his power to help me get better. I'm going in today for my second lumbar epidural steroid injection, and I'm actually looking forward to it! I know it will help me. The last one lasted almost a week--I took much less pain medicine and that, ultimately, is my goal. I want to be able to live with this. I also need to start exercising, maybe playing tennis or something like that, and these shots will hopefully get me to where I can do that and not just lay around in pain.
Thanks again for all your love and support and I'll keep everyone updated!
Love, Christina
  #7  
Unread 10-11-2005, 09:49 AM
update--Degenerative Spinal Stenosis & LESI

Just a quick update. My back surgery was postponed until 3rd Oct. I have now had it and am 9 days post op. Surgery went well and I am doing okay. They did the laminectomy as planned and they were also going to do a discectomy for the disc that is sitting on my sciatic nerve. They couldn't do it as the nerve is wrapped around the disc and it would have left me paraplegic if they had tried to unravel it, so unfortunately they had to leave it. I still have the pain down my left leg, but at least IF the nerve does unravel itself from the disc, there is now room for the disc to go back where it should be.

Now there is just the healing and doing zilch again for the next 6-8 weeks.

Thank you for your good wishes. I am just so glad that the surgery is behind me now.

Hugs and regards
  #8  
Unread 10-11-2005, 12:54 PM
update--Degenerative Spinal Stenosis & LESI

Hi Gail
I was wondering if you had your back surgery. I really hope this one works for you. That wasn't good news about the nerve being wrapped, but I am glad alot of your pain is gone.
I see the neuro this Friday. I don't think injections would help fix my bowel and bladder problems. I really just want to have the surgery and get done with it. I have 1 protruding disc and a herniated one right under it. Whenever I walk I feel like the vertebrae are rubbing making a popping noise. I have a pulling pain in my right heal now when I stick my leg out. This just started over the weekend. I feel things will just get worst.
Let us know how your recovery is coming. What is the restrictions after this kind of surgery? I also have narrowing of the right lateral recess, arthritis in the same area (l3-L4)I have the dura sac with either blood or disc material pushing into the left neuro foramen at L5-S1 pushing on the nerve root sleeve. Do you think this all warrants surgery? I am not surgery hungry, but am ready to a ending to this long journey.
Take care and keep us posted
Peggy
  #9  
Unread 10-13-2005, 02:55 PM
update--Degenerative Spinal Stenosis & LESI

Peggy

The restrictions are about the same as hyst - six weeks doing zilch. No bending, no lifting and no long periods of sitting.

Truly with your discs the way they are I believe you would benefit from surgery. I have gotten some relief from the pain, although I do still have the sciatic nerve pain. My back is still sore at the incision, but that is to be expected, as we use our backs a lot.

I was like you too, if I could have avoided surgery I would have, but the neurosurgeon (who doesn't operate unless absolutely needed) offered me surgery as soon as he saw the results of the MRI I had done prior.

All the very best wishes for your appt tomorrow and let me know how you get on.

Hugs and regards
  #10  
Unread 10-13-2005, 05:15 PM
My symptoms???

I am new to this site and your post is the first one I have read. While reading your post I am saying to myself...me...me...me. I had endo(2 surgeries for that) and then a hyst @ age 20. I have been in pain the last 7 years with my back and abdomen. I had 2 different surgeries to have my ovaries removed, and my back is no better. I have a degenerative disc in my L-4/L-5. No one is willing to anything more about it. I have had nerve blocks, facet blocks, esi's, discogram, and physical therapy. One doc tells me that I would be a good candidate for disc replacement in about 5 years. That doesnt help me alot. For now they are just "bandaging" it with pain meds. I am sick of living with this pain and no answers. I had an x-ray of my abdomen today to see if I have any adhesion problems.
I too have bowels and bladder problems. I have also been told I have spina bifida occolta. I dont know if this is causing any of the problems. I would really like to hear what you have to say and any advice you are willing to give. Thanks
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