Stressed out...t5 spinal cord herniation

ginnie · 07-10-2013, 07:39 AM

I wound up in Columbia Missouri, Mayo clinic sent me there for treatment. Try Columbia University medical center, 1 hospital drive in Columbia. They do lots of research and it is also a teaching institute. I engaged in a trial study there, and found the care to be excelent. This facility was better, than in St.Louis, Barns hospital. I wish you all the best. ginnie

dltipton · 11-16-2013, 12:27 PM

Quote:

Originally Posted by kccb

First, I hope you have had success if you went through with the surgery.I am interested in talking with someone who has actually had this surgery. Would you recommend, how are you doing now?

I am having trouble getting a doctor to do help me. Have seen 2 neurosurgeons in St. Louis area. One said, good luck I am not the doc for you, you need a REAL SPECIALST, good luck finding someone here in MO that will touch you!! The other said to come back in 6 months to see if my symptoms progress. *** Both are willing to say its spinal cord herniation, but neither will touch me. It shows clearly on MRI and myleogram so why not fix it before it gets worse!!!

Have contacted Mayo clinic today, for a third opinion. Waiting for call back.

I have been battling severe lower back pain for about a year now. I am 38 with 2 kids and was in great shape until this last year. There are some days I can hardly walk the pain is so bad. Been to the ER in tears begging to be admitted and they shoved me out the door with pain meds, they didnt even touch my pain. Did weeks of physical therapy, no help. Did steroid injections, no help. Tons of meds, no help. I just want to be fixed!!!!! I am too young not to be able to walk.

Any suggestions or advice would be appreciated.

I am in St. Louis and just received my MRI results. Starting in square one… I would love to understand personal experience with the local neuro docs. Have a consult next week with a doc that has repaired 4 cord herniations. 4.---to say I am very concerned would be an understatement.

dltipton · 11-16-2013, 01:29 PM

Quote:

Originally Posted by kccb

First, I hope you have had success if you went through with the surgery.I am interested in talking with someone who has actually had this surgery. Would you recommend, how are you doing now?

I am having trouble getting a doctor to do help me. Have seen 2 neurosurgeons in St. Louis area. One said, good luck I am not the doc for you, you need a REAL SPECIALST, good luck finding someone here in MO that will touch you!! The other said to come back in 6 months to see if my symptoms progress. *** Both are willing to say its spinal cord herniation, but neither will touch me. It shows clearly on MRI and myleogram so why not fix it before it gets worse!!!

Have contacted Mayo clinic today, for a third opinion. Waiting for call back.

I have been battling severe lower back pain for about a year now. I am 38 with 2 kids and was in great shape until this last year. There are some days I can hardly walk the pain is so bad. Been to the ER in tears begging to be admitted and they shoved me out the door with pain meds, they didnt even touch my pain. Did weeks of physical therapy, no help. Did steroid injections, no help. Tons of meds, no help. I just want to be fixed!!!!! I am too young not to be able to walk.

Any suggestions or advice would be appreciated.

Ditto. Spinal CORD herniation T6-7. St. Louis, MO area. I need info. Definitely a bit FreaKED out.

ginnie · 11-16-2013, 02:56 PM

Hello to both of you. I hope you get in to see the right kind of doctors. How you do, really depends on just how severe the cord compression is. I would never wait 6 months to see if it got worse. If you are having trouble walking, seek out that neuro surgeon that you can trust. You don't want the vertebra to get worse. If all other methods of help have been exhausted, go for the surgery. I have had two fusions, different area, and had a good outcome. ginnie

dltipton · 11-17-2013, 11:11 AM

Thank you ginnie. With this diagnosis comes a tear in the dural lining that surrounds the spinal cord and brain; the tear allows the spinal cord itself to kink or slip through the opening causing a variety of symptoms in both kind and intensity. The more I read, the more concern I have, but finding the correct neuro doc is imperative. Thus the main reason for my posts here. I don't believe the surgery relates to fusion or disc management but instead freeing the cord from its entrapment and repairing the dural sac tear. Some of the more recent literature reports 130 (with one reporting 176) or so documented cases world wide. I'd really like to find the docs with the most experience in repairing this type of lesion.

dltipton · 01-05-2015, 03:56 PM

Quote:

Originally Posted by ginnie

Hello to both of you. I hope you get in to see the right kind of doctors. How you do, really depends on just how severe the cord compression is. I would never wait 6 months to see if it got worse. If you are having trouble walking, seek out that neuro surgeon that you can trust. You don't want the vertebra to get worse. If all other methods of help have been exhausted, go for the surgery. I have had two fusions, different area, and had a good outcome. ginnie

Ginnie, I'm replying a bit more than a year later. I did have a 3 level laminectomy and spinal cord revision/repair surgery which included the addition of a bovine sling. While I am an incomplete paraplegic, I am ambulatory most of the time. I am pleased with my outcome although it is not symptomless.

I am still looking for someone to connect with who is on this same journey I am on. Anyone reading this thread who has a you spinal cord herniation PLEASE contact me.

ginnie · 01-06-2015, 03:37 PM

Quote:

Originally Posted by dltipton

Ginnie, I'm replying a bit more than a year later. I did have a 3 level laminectomy and spinal cord revision/repair surgery which included the addition of a bovine sling. While I am an incomplete paraplegic, I am ambulatory most of the time. I am pleased with my outcome although it is not symptomless.

I am still looking for someone to connect with who is on this same journey I am on. Anyone reading this thread who has a you spinal cord herniation PLEASE contact me.

I will always be around, even a year later. I know so very well those of us with damaged spinal places and the hard road to recovery even when surgery is successful.
I was lucky as it was the risk of being paralyzed. I came out ok and only have to worry if the below hardware vertabre would fail.
I also came to NT to connect with others going through this.
do u have a good support team near you? Having that shoulder near by, can ease the whole of your being and help. Please do contact me at any time with anything u think I can help with.

I am out of the USA right now, but have a tablet. I hope your progress can get better. None of this is easy, and we are forever changed for going through spinal fusions and herniations.
not to mention a great deal of pain. Let me know how you are anytime.

moonstar54 · 01-07-2015, 12:00 PM

I read this post just now & was following Mommy and saw she was going to have surgery in May 2012.

If your here, I would really like to hear from you to see how everything went and if your ok.

I hope the very best for you and hope to hear from you very soon.

Dubious · 01-09-2015, 10:39 PM

Quote:

Originally Posted by mommyof2grls

Yes this is VERY stressful! I have had numbing and tingling for years i was atleast in my 20's but they could NEVER find anything! i have had so many tests blood work mri ctscans...i have had a heart at attack and a stroke..all before my 30's....i also have degenerative disk diease in my back l4..l5..s1...n1
I really dont think a 2nd opinin will really h elp bc i see the damage and have talked to many of my doctors and if i dont get it done then i will wake up one day and not be able to walk and really dont want to risk that either...honestly all this has opened my eyes! I really havent LIVED i mean really LIVED... i have let stress....work..etc run my life well i am done and READY to LIVE and be HAPPY i mean really HAPPY!!!! I will def keep everyone posted...i now feel like i am NOT ALONE thanks....

Did they use the term "syringomyelia?"

dltipton · 04-28-2019, 07:59 PM

Quote:

Originally Posted by dltipton

Ginnie, I'm replying a bit more than a year later. I did have a 3 level laminectomy and spinal cord revision/repair surgery which included the addition of a bovine sling. While I am an incomplete paraplegic, I am ambulatory most of the time. I am pleased with my outcome although it is not symptomless.

I am still looking for someone to connect with who is on this same journey I am on. Anyone reading this thread who has a you spinal cord herniation PLEASE contact me.

5 years 5 months post Spinal Cord Herniation repair. Anyone here following this forum with this diagnosis? Ambulatory without a device almost always. Symptoms still present in some forms but continuing to improve... MRI tomorrow for 5 year f/u... new symptom, dizziness with thoracic extension.

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