Post by davincidanes on May 17, 2015 8:28:29 GMT -8
Please excuse my irreverence, but I'm a little angry, upset, depressed, annoyed, & feeling defeated right now.
I got the phone call yesterday, from one of the top Neurologists in the country, that he and his peers all agree that I have scarring inside my cervical spinal cord at C-4 & C-5 as the result of two specific injuries that I've had over the past 20 years.
What can they do about it? NOT A DAMNED THING.....besides watch it with MRI's at 4-6 month intervals and "manage" my symptoms with additional/different meds.
Unfortunately Scar tissue is a major problem in our bodies. Even though it is supposed to protect it also blocks regeneration and some healing. I have a ton in my body too causing all source of havoc. It is definitely a problem with all of us who have gone into major surgeries and our causes of injury. I feel for you and hope you can find a way to deal with the pain. I try to deal the best I can but I too have some major bad days and tend to want to be alone. We all have a very challenging life to get by with everyday. All I can say is stay positive, keep smiling and pray for hope and our well being. I wish you well. Best Regards, Joe
It's too bad that they can't do anything but it's not physically degenerating you is it? What's scary is that you're only finding out about this 20 years later!
Post by davincidanes on May 18, 2015 19:36:25 GMT -8
Well, yes, DJ, it is... My original injury goes back to 1997. Cervical stenosis with cord bruising and 5 level cervical laminectomy. In October 2013 I took a hard fall landing on the back of my head, and "jarring things loose"... or something. Shortly after that the severe numbness started in my toes and had worked it's way up to my hip area by May of 2014... with gait, balance, and sensation getting worse ever since. It's been a long process getting a firm diagnosis. First it was thought to be Multiple Sclerosis, then a spinal cord tumor... now scarring... glial cell "invaston" of the spinal cord at C-4 and C-5. So yes, I'd say that it has definitely progressed to this point. Now that I'm able to connect the dots, I am seriously trying to prevent any further damage by wearing a soft cervical collar 75% of the time to prevent any flexing/extension or stretching that may be aggravating the issue. <sigh>
Well, yes, DJ, it is... My original injury goes back to 1997. Cervical stenosis with cord bruising and 5 level cervical laminectomy. In October 2013 I took a hard fall landing on the back of my head, and "jarring things loose"... or something. Shortly after that the severe numbness started in my toes and had worked it's way up to my hip area by May of 2014... with gait, balance, and sensation getting worse ever since. It's been a long process getting a firm diagnosis. First it was thought to be Multiple Sclerosis, then a spinal cord tumor... now scarring... glial cell "invaston" of the spinal cord at C-4 and C-5. So yes, I'd say that it has definitely progressed to this point. Now that I'm able to connect the dots, I am seriously trying to prevent any further damage by wearing a soft cervical collar 75% of the time to prevent any flexing/extension or stretching that may be aggravating the issue. <sigh>
Oh wow, I see what you mean now. Good idea with the collar. What position do you sleep in normally? Lαrα has created a thread on Sleep Position which suggests that sleeping on your back with no pillow is best for your spine. Maybe you can try that if you don't do it already!
davincidanes, if the scarring is truly "inside the spinal cord", there may not be anything doctors can do because of the risk of further injury resulting in paralysis. But managing the pain can be done. Now that is getting more difficult with latest govt. regs., but is necessary to be able to live anything like a normal life. Wearing a soft cervical collar will not weaken neck muscles? Asking because I do not know...
Yes, I have an appt. tomorrow with my Neuro so any suggestions would be great. Thanks! DJ, about sleeping.. I start out on my back... of course learning all about the cervical spine's "neurtral" position, 20 years ago. I do tend to roll over onto my side to fall asleep, though. It's funny, I always do wake up back on my back again.
davincidanes, I just spoke to Truwrecks--his surgeon told him that scar tissue does not form inside the spinal cord because CSF is designed to destroy it as it forms. But scar tissue that forms on the outside of the cord is not elastic, so when cord is inflamed, it will bind and cut off signals. Scar tissue can also constrict the foramen, pressing on nerve roots. Either way, function can be lost.
In your post above, you mention glial cell "invaston"--did you mean "invasion"? Here is a link that might explain some things to you about this: www.ninds.nih.gov/disorders/sci/detail_sci.htm#268063233. Below I am going to excerpt a few relevant paragraphs for you to read before your appt tomorrow.
The spinal cord is made up of neurons, glia, and blood vessels. The neurons and their dendrites (branching projections that receive input from axons of other neurons) reside in an H-shaped or butterfly-shaped region called gray matter. The gray matter of the cord contains lower motor neurons, which branch out from the cord to muscles, internal organs, and tissue in other parts of the body and transmit information commands to start and stop muscle movement that is under voluntary control. Upper motor neurons are located in the brain and send their long processes (axons) to the spinal cord neurons.
The axons carry signals up and down the spinal cord and to the rest of the body. Thousands of axons are bundled into pairs of spinal nerves that link the spinal cord to the muscles and the rest of the body. The function of these nerves reflects their location along the spinal cord.
...an injury is more likely to cause fractures and compression of the vertebrae, which then crush and destroy the axons that carry signals up and down the spinal cord. A spinal cord injury can damage a few, many, or almost all of the axons that cross the site of injury. A variety of cells located in and around the injury site may also die. Some injuries in which there is little or no nerve cell death but only pressure-induced blockage of nerve signaling or only demyelination without axonal damage will allow almost complete recovery. Others in which there is complete cell death across even a thin horizontal level of the spinal cord will result in complete paralysis.
Traumatic spinal cord injury usually begins with a sudden, mechanical blow or rupture to the spine that fractures or dislocates vertebrae. The damage begins at the moment of primary injury, when the cord is stretched or displaced by bone fragments or disc material. Nerve signaling stops immediately but may not return rapidly even if there is no structural damage to the cord.
The primary injury initiates processes that continue for days or weeks. It sets off a cascade of biochemical and cellular events that kills neurons, strips axons of their protective myelin covering, and triggers an inflammatory immune system response. This is the beginning of the secondary injury process.
Following a spinal cord injury, astrocytes (star-shaped glial cells that support the brain and spinal cord) wall off the injury site by forming a scar, which creates a physical and chemical barrier to any axons which could potentially regenerate and reconnect. Even if some intact myelinated axons remain, there may not be enough to convey any meaningful information to or from the brain.
Some people who have spinal cord nerve are paralyzed often develop neurogenic pain—pain or an intense burning or stinging sensation may be unremitting due to hypersensitivity in some parts of the body. It can either be spontaneous or triggered by a variety of factors and can occur even in parts of the body that have lost normal sensation. Almost all people with spinal cord injury are prone to normal musculoskeletal pain as well, such as shoulder pain due to overuse of the shoulder joint from using a wheelchair. Treatments for chronic pain include medications, acupuncture, spinal or brain electrical stimulation, and surgery. However, none of these treatments are completely effective at relieving neurogenic pain.
Current research is focused on advancing our understanding of four key principles of spinal cord repair: Neuroprotection—protecting surviving nerve cells from further damage Regeneration—stimulating the regrowth of axons and targeting their connections appropriately Cell replacement—replacing damaged nerve or glial cells Retraining CNS circuits and plasticity to restore body functions
Neurons have a limited capacity to regenerate. As nerve cells are either damaged or destroyed by injury, and as others die naturally during development, the number of chemical interactions between adjacent nerve cells (synapses) decreases. Nerve cells can die when they do not make enough synapses, leaving large numbers of supporting glial cells in the area of damage. Glial cells are thought to support tissue after injury to the spinal cord but also inhibit the growth of axons.
Some anti-inflammatory drugs have been shown to encourage axonal regeneration by stimulating CNS nerve axons to grow and by inhibiting amino acid toxicity and cell death that occurs after the initial injury. Two such nonsteroidal anti-inflammatory drugs are ibuprofen and indomethacin. The drug rolipram was shown to encourage axonal regeneration in an animal model of spinal cord injury. Preclinical studies are examining the effectiveness of rolipram in combination with other drugs given at different delivery times post-injury.
To get past the glial scar that forms after a spinal cord injury and be able to transmit signals from the cell body, an axon has to advance between the tangles of long, branching molecules made up of inhibitory proteins and sugars that surround the cells. Experiments have successfully used a bacterial enzyme, chondroitinase ABC, to clear away the tangles so that axons could grow in animal models of injury. Researchers are looking at ways to combine chondroitinase ABC with other treatments, such as cell transplants, to increase functional recovery.
Other researchers are using a tissue-engineered highway-like matrix that is implanted onto the spinal cord to help axons “bridge” the lesion that forms at the injury site and to rebuild neural circuits. They also will look at using the matrix as a way of delivering growth factors that can promote nerve cell survival and inhibit proteins associated with the glial scar.
Bone marrow stromal cells, taken from the tissue found inside bones, have been shown in some studies to increase recovery from an injury to the spinal cord. Scientists are studying the injection of these cells into the cerebrospinal fluid (fluid that bathes the brain and spinal cord) to promote proteins needed to grow and maintain nerves and increase nerve signaling across the glial scarring that forms post-injury.
Nasal olfactory ensheathing cells, taken from the lining of the nose, are special types of glial cells that have been shown to promote axon regeneration and remyelination at the injury site. The transplanted cells have been shown to permit regrowth of axons in both the peripheral and central nervous systems, and improve functional outcome in animal models of spinal cord injury. Early-stage trials in humans are being conducted overseas.
Hope the above info may help you ask better questions at your appt!
Post by davincidanes on May 21, 2015 3:42:17 GMT -8
Thank you, wavewolf, wavewolf,. That is good to know! I surely appreciate yours, and Truwreck's input. Skipping off to the Neuro today a little bit smarter.
Yes, I have an appt. tomorrow with my Neuro so any suggestions would be great. Thanks! DJ, about sleeping.. I start out on my back... of course learning all about the cervical spine's "neurtral" position, 20 years ago. I do tend to roll over onto my side to fall asleep, though. It's funny, I always do wake up back on my back again.
I just remembered that before my injury I'd sleep in all positions and the only reason I don't do that anymore is because I'm physically unable to. I think you're fine if you spend a lot of time on your back when sleeping but you could try using no pillow maybe.
Post by davincidanes on May 21, 2015 15:48:15 GMT -8
Well, had the appointment today with the intent of re-grouping after all of the "opinions" of the specialist, and although there is no "cure", we do now have a game plan. Well, who knows if the scarrubg will stop progressing... it may not, it may. We will do a new MRI in 4 months to see if it's stabilizing or getting worse. In the meantime, she has increased one medication, added another, and has given me a referral to a Pain Specialist. She was also thrilled when I told here that I was training Maestro to be my Service Dog. We talked for quite awhile about his size, temperament, and willingness to please. I am to continue wearing my cervical collar to prevent further damage to the cord while exercising, driving, and working with dogs. She also wants me to start using a cane. Now shopping online for cool cane options.
Well, had the appointment today with the intent of re-grouping after all of the "opinions" of the specialist, and although there is no "cure", we do now have a game plan. Well, who knows if the scarrubg will stop progressing... it may not, it may. We will do a new MRI in 4 months to see if it's stabilizing or getting worse. In the meantime, she has increased one medication, added another, and has given me a referral to a Pain Specialist. She was also thrilled when I told here that I was training Maestro to be my Service Dog. We talked for quite awhile about his size, temperament, and willingness to please. I am to continue wearing my cervical collar to prevent further damage to the cord while exercising, driving, and working with dogs. She also wants me to start using a cane. Now shopping online for cool cane options.
Glad to hear that you've got things somewhat figured out davincidanes! I hope those meds aren't strong. I'm the type of person that avoids meds at all costs so the thought of increasing & adding meds worrys me.
Post by davincidanes on May 21, 2015 16:09:55 GMT -8
DJ, Totally understood, DJ, but right now I am so freaking miserable that I'll try anything for some pain relief. The doses of Baclafen & Gabapentin that I'm taking right now are so low that they aren't doing much good. I hate the idea of narcotic meds again,... I was on them for 7 years steady after my injury back in 1995... and aonly on & off low dose for acute periods, so I'm quite familiar with the pros and cons. I just really want to have some quality of life back, if possible. I surely appreciate everyone's support and good thoughts.