Stressed out...t5 spinal cord herniation
 

SO JUST FOUND OUT TODAY AFTER MANY TEST THIS MONTH THAT I HAVE A T5 SPINAL CORD HERNIATION :eek:I am 33 and will have the spinal cord surgery....found out today that I am paitient number 4:confused: I have 2 young girls and am very very SCARED! Has anyone had this done or know someone who have had this done?

I don't know anyone personally but I have read many success stories on thoracic disc surgery. Most people I believe opted for neurosurgeons over orthopedic surgeons. Also I have read that surgery is only done as a last resort in that area. What are your symptoms? Who have you consulted? What conservative treatments if anything have they tried?

Thanks for the reply
 

Well I actually found out by mistake... I went to the dr bc my right leg and knee was swelling ... My left leg was fine.. Did an MRI and found out I had 3 herniated disk L4 L5 S1 N1.... Set up for my lower lumbar epidural ... While I was meeting with the dr I expressed pain in my upper back( at the bra strap up) so I asked for a MRI of that area... Had it done on a sat and was called that mon... ( the dr called from home) "SHE STATED... YOU HAVE A VERY SERIOUS SPINAL CORD HERNIATION" ...with that said I was scared to death... Found a neurosurgeon who is highly recommended and is great at this portion of the spine... I have always has numbing and tingling in my legs feet hands and fingers... Through the years never been able to find out why... So my MRI showed a spinal cord HERNIATION .. I do have nerve damage that can not be reversed ;( there are really no other option other then surgery since I
Have symptoms already... If I don't get the surgery i will lose my ability to walk;( that is not the chance I am willing to take and have 2 girls who I would love to be there for... Just found out surgery is may 17... I have quite a health history and have to be cleared by cardio...pulmonary.....pcp...etc...
I have had trouble finding things online and or finding things out about people who have had it done... I have had many surgeries in my life but NEVER one this serious... I would love and appreciate any helpful info you have....thanks so much!

If it makes any difference to you, I also have a bulge at t5/6. An osteopathic did it to me when he manipulated my back. I have had mild pain for 5 years but got in a car accident in March and got whiplash which caused pins and needles and pain all over. I also had a band of pain around my chest. I am better now but and was told my bulge is very mild and things will settle. I am also dealing with a bulge in L5/6 causing double sided sciatica. I also had open spine surgery last February. Not fun at all. The only advice I can give you is to be certain your disc is herniated AND causing spinal compression AND causing your symptoms before they operate. Numbness can be caused by many things. Do you have any numbness in face or head? Or is it all below T5? I also wish you the very best of luck with this.
.

Also how many years have you had numbness and tingling?

I believe (as I construe it, and mommyof2grls will have to verify/correct my interpretation) that this is a spinal herniation - a herniation of the cord itself - rather than a herniated disc impinging on the cord.

Folks here know how conservative I am about surgey. I think this may be one that is warranted; damage has already been done with a very poor prognosis if not corrected.

mommyof2grls, if you're the 4th patient to have this procedure (does that mean 4th currently in line, 4th by this surgeon, at this hospital, in this country, or ever?), there may not be very much available online to non-professionals. You may be able to get a pointer from the surgeon or ask your PCP to find something for you (they have access to sources we, as patients, don't).

I do find some articles by searching: spinal herniation surgery -disc -disk
(the "-disc -disk" eliminates results for disc herniation)

HTH,

Doc

hello mommy
 

Hello, and a warm welcome to Neuro Talk. It is OK to feel scared. We all do when we face surgery. You found the right place for support. I found it the same way you did, and in the same state of fear and anxiety. Please know that this surgery can turn out OK. Just do your homework. Make sure you have a second opinion. Write all questions down, and understand your MRI. You want to ask your doctor about the condition of the vertrebre above and below the site, and make sure they are in good shape. Even if you are in pain, don't rush this, but get that second opinion with a good Neuro Surgeon. We will be here for you. I have had two cervial fusions, and have been on this site for almost two years. I received lots of help while I went through my last fusion. It will be OK, and you can talk about any issue you have concerning your surgery. Welcome again to Neruo Talk, ginnie

thanks
 

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....

Ok, regardless of what I said above (and I'm not flip-flopping), I believe that where surgery is concerned, multiple opinions are ALWAYS in order, and here's why....

First and foremost, we're not doctors here; we're peer patients like you, with all the same concerns, doubts, fears, questions, emotions.... SOME of us have acquired some experience and wisdom with the desire to impart/share, and support others through this process. It's not easy for anyone, and no-one knows that better than the folks here who've been through it and/or are going through it. Also, some of us have some experience dealing with doctors, and with what they sometimes - don't/forget to - tell us.

If a second/third opinion comes in agreeing with the first, you have some peace of mind that this is the right course to take. There are never any guarantees with surgery, and there are situations/possibilities where you could/might conceivably doubt/question yourself afterward for NOT getting a second opinion - coulda/shoulda.

If, OTOH, a second opinion disagrees with the first, there may be some hope/solution without undertaking the risks of surgery (which are many) OR there may be a difference of opinion on the particular procedure (or particulars OF the procedure) in which case a third opinion might be in order to assure some agreement and that all bases have been covered. (Again, we're not doctors, so we don't know.) This goes toward your peace of mind as well.

You want as much information as possible about your condition and ALL available options in order to make the best informed decision possible for your and your family's futures.

We'll all support you whatever your decision is, but we do hear all too often, "If I had only known then what I know now" or "I wish someone had told me...", etc.

The time is now to ask all the (right) questions.
Google: questions ask spinal surgery (and play around with the search criteria to find out exactly what you want/need to know).

Doc

Hi mommy
 

You stated that you had many doctors telling you that you need the surgery. Even though you said, you don't think you need a second opinnion. As long
as others have looked over your records, you can feel assurred that what they are telling you to do is correct. I was in danger of being paralized, and had to have surgery to prevent this. I was in the same kind of situation. I was a success for the proceedure I had. I do want you to know that all this can turn out OK, and that you can go back to being a full time mommy again.
I wish you all the best. Please let us know how you are when you are recovering. ginnie

so you had the same thing?? similar how?? this is very stressful with all involved! please explain your condition... so i can feel a little better about this situation.

I have always had numbing in my finger toes and feet PROBABLY SINCE MY 20'S

Re: what happened to me
 

Hi Mommy. I had a business where I looked down into a magnafier for thirty years. I destroyed my neck basically. I didn't quit when I should because it was my only income, I was a single mother, and I had no health insurance. so I worked with pain for many years. I didn't stop until I could not move my head up, down or any which way. At this time, or 6 years ago, they said I damaged C6-7, and it was bent to such a degree, I risked being paralized if I didn't do the surgery, and they told me, there was a risk of "doing" the surgery. What this surgeon did wrong, was he didn't tell me there were many other things wrong with my neck. He said he did all he could do. So I lived with the result until 22 months ago when my pain specialist did a Katemine infusion, with that screen he could see what was happening to my spine. He no longer could control my pain. I had reversed the curve of my spine altogether, and ruined all vertrebre above. they fell like dominos. So I had fusion C3-7, and had my neck given a new shape, to be what it should be. This took the very best neuro surgeon in my area to do this correction. Unfortunately with degenerative disk and joint disease, I am not stable in my neck today. C1-2 is hurting, and so are the ones below at T-1-3. The instabilty of the entire bracket does put pressure on the remaining verterbre. I am very careful in any activity. This first doctor, should have done the revisions needed all through my neck, he did not do this as I had no health insuance. He only corrected the immediate danger, and left the rest alone. I hadn't gone for the second opinion, which I am sure I would have been told there was more wrong with my neck to begin with. I was too in a hurry to get the pain over with. My moral of the story is to go for that second opinion, get your records, research the records, and understand all they want to do before you agree to the surgery. I feel very strong, that we need as patients to understand the whole situation and the proceedure before we do the surgery. I sure do wish you all the best, Nobody likes these kinds of situations. I will be here for you. ginnie

Looking for a surgeon
 

I have arachnoid cyst with a herniated spinal cord. Can anyone assist me with finding a surgeon who has experience with this surgery? I am in the albany ny area.
I would assist any help I could get.

I just googled: spine surgeon albany and there doesn't seem to be any shortage, and you're not that far from NYC, where I'm sure there are many more.

Is it specific referrals/recommendations you're looking for?
First, I'd google: how to find best spine surgeon and read up on it.
Then I'd email those that turn up in searches, ask all my doctors, their staffs, my insurance company, and try Angie's List:
http://www.angieslist.com/companylis...e-and-neck.htm

Doc

If you are just reasonabley close to a teaching hospital, gather up your records and head that direction and get an opinion from an ortho/neuro spinal tag team. Just my opinion but the greater the challenge, the more you need to have the two spinal specialists who will bring his/her specialized gift to the operating table. I have had tons of spinal surgery and the "big boys" weren't a dime more expensive than a local ortho or neuro surgeon. We have one spine. Treat it well. Best wishes.

Hi Tom
 

Welcome to Neuro Talk. Glad you found this site. Doc smiths post is right about how to find help. Go for more than one opinion and don't give up. things can turn out OK. I will be thinking about you. ginnie:hug:

How are you now? Did you have your surgery?

Hi ejwbibby
 

Yes, I did have a second spinal fusion C3-7. I still have some pain, and take some medication for it. However the pain in my arms is gone. Mostly I have left over pain at above and below the site of fusion.
I sure hope your surgery goes OK. It isn't easy to face. Hope you got all the opinions you can before deciding in this direction. I was lucky that I got as much relief as I did. My first fusion I didn't get much relief at all. Let me know how you are doing. We will be here to support you as you go through this. That is why I joined NT too. ginnie

I have spinal CORD herniation too...advice appreciated
 

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.

Hi Kccb
 

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

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.

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

About Fusions
 

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:grouphug:

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.

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.

hello after a year
 

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.:grouphug:
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.

Mommy How are you????
 

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.

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.