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Spinal Cord Herniation- Patient experience

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Old 12-15-2012, 04:46 AM   #1
Duffy
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Default Spinal Cord Herniation- Patient experience

Hi Folks,

I wanted to share my experience after having been diagnosed with spinal cord herniation resulting in a Brown-Sequard Syndrom ( I had neurological symptoms for 2 1/2 years before the cord herniation was diagnosed). This is a rare medical condition with only approx. 100 cases published worldwide so when I was told that I would have to undergo surgery at the spinal cord I was very nervous. There is very little medical literature on the net and virtually no patient feedback/experience.
I was lucky to have found really experienced neurosurgeons who have operated on many patients with spinal cord tumors so they know how to access the site and how to close the defect in the dura. After surgery I was allowed to get out of bed after two days, out of the hospital after 10 days and after two week rehabilitation allowed to go home. I was closley monitored with weekly MIR scans to make sure that no CSF was leaking out of the dura at the operative site. Now at 5 1/2 weeks after surgery I am allowed to take up sports and horse back riding again. So all in all a very quick recovery
The Neurological deficits in the legs have started to improve slowly. Only time will tell whether it will return to normal but this is not so important to me.

I was told that surgery had to de done because of a relatively high risk of paralysis. The actual defect in the dura was very large, 1,5cm, so the surgeon afterwards called it a "ticking time bomb".
I am happy to be home in time for Christmas and hope to be able to help
other patients with the same diagnosis out there: to know that, even though its a frigthening diagnosis, if all goes well its not too bad
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Old 12-15-2012, 10:22 AM   #2
bmatz25
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Default Great News

Glad to hear that your recovery is going so well. Sounds like you were in very good hands. Enjoy your Christmas with all that you love!
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Old 12-15-2012, 11:12 AM   #3
Leesa
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Goodness, I've never heard of that. I've had herniations and surgeries, but nothing like that!

I'm so glad your recovery went so well, and that you're back to "normal." Be careful tho. Sometimes after we have spinal surgery, the levels above and below the surgery site will fail. That's because they have to take on more of the load. So watch carefully, and you might want to limit some of what you do. You certainly don't want to have to go thru another surgery.

After each surgery that i had, the level above failed. I had to have another surgery to repair it. And believe me, mine is not an isolated case by ANY means. It happens all the time. God bless and take care. Hugs, Lee
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Old 12-16-2012, 08:17 AM   #4
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This is why I refer to having the surgeries when the cord is not preserved! It is rare, but it can and does happen all of the time. Not all outcomes are good!Hopefully you find it prior to this happening. There is a chance that the scarring of the dura will cause motor problems down the road.
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Old 12-20-2012, 02:52 AM   #5
Duffy
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Scarring of the dura is a risk I will have to live with. I believe my recovery was so quick because they did not have to go through any bone structure to access the site, ie no screws, tintanium plates etc used, so purely a soft tissue surgery ;-). I would no undergo back surgery for pain relief as I know many patients where it did not work out as planned.
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Old 01-22-2013, 08:38 AM   #6
Nederlandse
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Thumbs up Spinal Cord Herniation not so easy to diagnose?

Thank you very much Duffy for your report. I hope you are still doing well and that the deficits in your legs have reduced significantly.

I have recently been diagnosed with a Spinal Cord Herniation (fortunately this took 'only' 8 months in my case). I found that not all hospitals have the equipement to see this on their MRI's. The second (Academic) hospital had more detailed MRI equipement. So in my case it was worthwhile to ask for a second opinion. Maybe there are more Spinal Cord Herniation patients out there who don't have the diagnosis because the diagnostic tools are not available everywhere or the Neurologist is not yet familiar with the Syndrom.

I still have to make the decision: should I have the operation or not. At this moment I have a referral to a Neurosurgeon to at least discuss the options and for now I am leaning towards having the surgery. Therefore, your input, especially wrt your recovery is very helpful for me.
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Old 04-15-2013, 04:32 AM   #7
mumoftwo
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Default me too...I've had a spinal cord hernaition

Hi everyone,
I too have had a spinal cord herniation at my t6 (bra level) repaired. The operation took over 6 hours and the neurosurgeons were unsure whether it would work but luckily it did. However, i didn't really have a choice about having surgery because it took me over 3 years to get a diagnosis and when i finally did my neurosurgeon told me i was 2 weeks away from being paralysed because my cord was so trapped and compromised

I went on to have the surgery and everything was going fine until a year later my scar tissue form a cyst within my spinal cavity. The surgeons tried everything to drain the cyst but it would not go away and then i developed a csf leak. To help the spinal cavity balance it's pressure i had a LP shunt fitted and this worked brilliantly. 3 months later I was back to work as a nurse and busy being a mum.

Everything continued to improve and i had a baby 4 years after my big first op which i never thought possible and through out my pregnancy i never had 1 day of back ache. The only complication was i had to have a c section under GA but this worked out really well and i was discharge home 36 hrs after my C-section.

However, about 6 months ago i started getting back pain and those strange neuro symptoms that i'm sure we have all experienced returned...like cold drips of water running down your leg, tingling feet, less sensation. I have returned to see my Neurosurgeon and he has MRI'd me and found my spinal cord scar tissue has settled down and my cord looks healthier than ever BUT a proportion of my spinal cord has adhered onto my spine. Hence causing me pain, burning and discomfort in my back and legs. This is inoperable due to the risk of paralysis.

Now i wonder if this is from me over doing it or whether it due to nerves coming back to life...ie: this pain has always been there but the numbness around my scarring has deaded the pain...does that make sense??

Anyway would love to hear from anyone who's had a spinal cord herniation (not disc herniation)

Look forward to hearing from you, K.xxx
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Old 06-14-2013, 07:45 PM   #8
spchemistry
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Hi Duffy,

I'm so sorry that you've had these back problems!! I just had an MRI done and it says that I have a spinal cord herniation from T4-T7. I've never heard of it and I'm very scared!! Originally, this was diagnosed 3 yrs ago as an arachnoid cyst, but now they say it's a spinal cord herniation. I've also had 2 spinal fusions about 10 yrs ago due to an auto accident in 1997.

Can you please tell me what symptoms you had? When I googled this condition it says that it is very rare. I'm trying to get an appt. with a neurologist in NY (I live in NJ), but haven't got one yet. Thanks so much!!
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Old 06-14-2013, 11:51 PM   #9
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SPChemistry,

Welcome, but be aware that Duffy hasn't been on this site since New Year's (1/1/13) according to his/her public profile. Hopefully someone else here may be able to help you.

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Old 07-10-2013, 02:47 PM   #10
kccb
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Angry Spinal Cord Herniation T7

Quote:
Originally Posted by spchemistry View Post
Hi Duffy,

I'm so sorry that you've had these back problems!! I just had an MRI done and it says that I have a spinal cord herniation from T4-T7. I've never heard of it and I'm very scared!! Originally, this was diagnosed 3 yrs ago as an arachnoid cyst, but now they say it's a spinal cord herniation. I've also had 2 spinal fusions about 10 yrs ago due to an auto accident in 1997.

Can you please tell me what symptoms you had? When I googled this condition it says that it is very rare. I'm trying to get an appt. with a neurologist in NY (I live in NJ), but haven't got one yet. Thanks so much!!
Hi spchemistry. I was diagnosed with a spinal cord herniation at t7 just within last month. I have had issues going on for several years now and they finally have pinpointed it. I too am scared being this is so very rare. I have progressively been getting worse over the last few months.
Let me give you a little background on my symptoms:

I am 38 and up until about 2 years was extremely healthy. I have been struggling with walking for several months now. There are some days that I just don't know how I do it! My pain originates in my lower back, but radiates down legs making them feel like 1000 lbs. It is like a stabbing, throbbing,muscle twisting, knot that is pretty much constant. It takes everything I have to lift my legs some days. Usually the mornings are pretty good, but once I am moving more than 5 minutes I am in pain. Sometimes, I have uncontrollable spasming in my right leg, which may last up to an hour. There has been a few times when my legs just completely lock up and I can't go anywhere!

My pain started being an annoying pain early 2012, but not constant. Started going to chiropractor, which did not help after months of visits I was worse than what I started. Seen my PCP. He did xrays, MRI of lower spine. Did 4 months of physical therapy. Seen rheumotolgists to rule out Fibromylgia, MS, Lupus. Blood tests all good, except for my CRP level was extremely elevated. Other than that they found nothing. PCP then suggested neurologist. Seen neurologist and he wanted thoracic MRI done. It showed that I have Spinal cord herniation at T7. So I needed to see neurosurgeon. The first neurosurgeon said... You need a specialist for this one, beyond my specialty. What the heck? So, I seen another neurosurgeon who is suppose to one of top docs in MO. He had me do a myelogram. It showed, no cyst, but did see abnormalities suggesting a herniation. He said that I do not present enough symptoms at this time to do surgery. He wants me to come back in 6 months to see if symptoms progress. Really??? That's January 2014. I am in constant pain, my quality of life sucks because I can not do anything. The little things can put in bed the remainder of the day. I am pretty much wheelchair bound or couch/bed bound in the late afternoon on most days.

After seeing this last doc and getting the impression that this is something that is a huge risk for them. I am looking into Mayo clinic and maybe will get more answers there. I am afraid that if not fixed soon, I could become paralyzed regardless.

Scared. Stressed. With just a little over 100 cases diagnosed, I am interested in talking with others regarding their symptoms, experience etc.
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