Topic: Spinal cord surgery
joyce420's photo
Thu 11/20/14 07:50 AM
On Dec. 16 I will be having spinal cord surgery as a result of the rare central nervous system disorder I have. (syringomyelia and chiari malformation). I had brain and spinal cord surgery in 1994, it was to try to slow the progression of the disorder I have. I also had a heart attack during surgery. Part of my skull was removed and a shunt was put in my spine to drain cerebral spinal fluid. Well, after 20 yrs, it is worse and I need more surgery, this time on the lumbar region.
I need prayers, please. This surgery scares me more than the first one. I'm older and they never found out what caused the first heart attack. It's also more risky because of where they have to operate. They have to go into my spine and work on the spinal cord.
Thank you so much.
Joyce

Amelinng's photo
Thu 11/20/14 08:12 AM
Wishing you a successful surgery and speedy recovery!
Stay strong and know that we are thinking and praying for you, Joyce! flowerforyou flowerforyou

no photo
Thu 11/20/14 08:32 AM
Be well (((Joyce)))...flowerforyou :heart:

smartwithsparks's photo
Thu 11/20/14 09:03 AM
Hoping for a speedy recovery,:heart: flowerforyou

graywolf55's photo
Thu 11/20/14 09:03 AM
Best of luck,wishes ,prayers (Will)

no photo
Thu 11/20/14 11:18 AM
Stay positive,it going to be ok.
Wish you successful surgery and quick recovery.

dreamerana's photo
Thu 11/20/14 11:47 AM
praying for the best flowerforyou

Vera's photo
Thu 11/20/14 12:04 PM

Stay positive,it going to be ok.
Wish you successful surgery and quick recovery.



Yes, dear Joyce, hold on to these words and go. Remember the song of Andre Crouch, called The Blood never loses its Power. As long as you believe in prayer, the Power of Jesus is there with you. In your mind you just touch the hem of His Garment, and see what He will do.
Dear Joyce, we pray that God will glorify Himself by this surgery, so that you rejoice again and giving testimony of His Love.
We love you and we bless you!
Rev. Vera

no photo
Thu 11/20/14 02:27 PM
Edited by fleta_n_mach on Thu 11/20/14 02:30 PM
hummm, really? I have a spinal cord injury and they won't touch me. Told me if the thecal sac is accidentally sliced that all the cerebral and spinal cord fluid would drain out, and death would occur, either that or a feeding tube. I refuse the referral for possible surgery for another fusion and bone spur removal. I don't see how that is possible for an operation on the cord. You can never repair the cord. The injury is permanent.

Good luck. Prayers. I hate neuro surgeons.

joyce420's photo
Thu 11/20/14 07:19 PM
Sorry about your illness.
Syringomyelia and chiari malformation is congenital and I didn't know I had it until I was 40 yrs old. It started in the neck area. My skull was too small for my brain and it was laying on top of my spine, letting cerebral spinal fluid into my spinal cord, but there was no way for it to come back out so a cyst was growing in my spinal cord and it damaged the nerves, causing pain, numbness, tingling, balance problems migraines, and many other symptoms. Since the damage was already done, the first surgery was to try and slow down the progression of he disorder. It is a lot like multiple sclerosis or Lou Gehrig's disease. It has gotten worse and now the syrinx is in the lumbar region. It's just really complicated and if the surgery works, it will be worth it, even with the risks involved. They will be putting in a shunt that will help to drain the fluid. The damage is already done, but I'm hoping it won't get worse for another 20 yrs.
The best way to describe how serious the pain is, the last person Dr. Kevorkian was going to help with her suicide had Syringomyelia. They were in the motel room when they were tipped off, and Dr. Kevorkian was arrested. There was also an episode on (I can't remember the name of the show, but they built houses for people who couldn't afford to buy one). It was a single mother of 3 daughters who all had Syringomyelia.
I'm sorry this is so long, but I don't know too many people who are curious about what I have. Thanks for the support and good luck with your own health problems.

no photo
Fri 11/21/14 07:24 AM

Sorry about your illness.
Syringomyelia and chiari malformation is congenital and I didn't know I had it until I was 40 yrs old. It started in the neck area. My skull was too small for my brain and it was laying on top of my spine, letting cerebral spinal fluid into my spinal cord, but there was no way for it to come back out so a cyst was growing in my spinal cord and it damaged the nerves, causing pain, numbness, tingling, balance problems migraines, and many other symptoms. Since the damage was already done, the first surgery was to try and slow down the progression of he disorder. It is a lot like multiple sclerosis or Lou Gehrig's disease. It has gotten worse and now the syrinx is in the lumbar region. It's just really complicated and if the surgery works, it will be worth it, even with the risks involved. They will be putting in a shunt that will help to drain the fluid. The damage is already done, but I'm hoping it won't get worse for another 20 yrs.
The best way to describe how serious the pain is, the last person Dr. Kevorkian was going to help with her suicide had Syringomyelia. They were in the motel room when they were tipped off, and Dr. Kevorkian was arrested. There was also an episode on (I can't remember the name of the show, but they built houses for people who couldn't afford to buy one). It was a single mother of 3 daughters who all had Syringomyelia.
I'm sorry this is so long, but I don't know too many people who are curious about what I have. Thanks for the support and good luck with your own health problems.


The cerebral and spinal cord fluid are supposed to flow together. They are the same fluid, connected. I also had the fluid cut off to my brain, causing tremendous pressure from neck cervical collapsing, disc prolapses and spurring with stenosis. All the same symptoms and permanent damage just from coughing too hard. Soooo they screwed me up with only one level of fusion when it should've been two at the time. The body tries to fuse itself and the spurring and stenosis then occurs. My cervical spine is collapsing, also thoracic and lumbar. Degenerative Disc Disease. So the fusion did relieve the pressure problem. Yeah, I know what that pressure pain is like. It's horrid. Thus causing permanent damage to the nerves dying too.

I had a friend whom they opened the bottom of the skull to relieve that pressure and made the spinal canal bigger to allow the fluid to flow without restriction. Worked for her.

I have another friend with MS. She has pockets in her spinal cord that are missing from the disease.

My maternal grandmother had the only form of MS that is hereditary, Anterior Horn's Disease.

I have a cousin who has lived with brain tumors for over 45 years and a shunt installed. It gets plugged and has to be surgically cleared every few years. Still the original after all those years. He still complains of massive headaches and has debilitated. It is such a shame, he was brilliant and an inventor for an Electric Company.

Nerve pain and loss of nerves is the worst pain.

I hope they choose the best possible option for you. It seems that I have run into colleagues that only cover up in this medical clinic system here for each others mistakes and azzes. Actually, they scare me now.

SparklingCrystal 💖💎's photo
Fri 11/21/14 07:33 AM
WIshing you all the best and a good, speedy recovery Joyce
flowerforyou flowers flowerforyou

no photo
Fri 11/21/14 09:32 AM
Many prayers sent your way!flowers
I have been in about the same situation.Only work injury.
I was lucky enough to have one of the best surgens in the Country.
Keep praying and
Just Believe! God Bless & Have Faith.flowers

mysticalview21's photo
Mon 11/24/14 08:39 AM
hope all went well and you are resting and healing now... many prayers for a full recovery ...

no photo
Tue 11/25/14 04:22 AM
Sending love, light & comfort your way, ((( Joyce )))...flowerforyou

 Maria195's photo
Tue 11/25/14 04:28 PM
Sending prayers your way Joyce and hoping for a speedy recovery! God Bless You!! flowerforyou flowerforyou

Chimeremeze's photo
Wed 11/26/14 04:54 PM
You are not alone. You are coming out a stronger and a better person. You will become a source of hope and inspiration to others. I wish you a successful surgery. I will be praying for you personally.