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Triestina
02-22-2016, 03:27 PM
Hello friends!

Today I was told by a very experienced spine surgeon that I need cervical spine surgery because my MRI shows "Minimal Myelomalacia within the cervical spinal cord at the level of C5-C6." This doctor seems very knowledgeable and comes highly recommended. He does around 125 cervical spine surgeries each year.

I wasn't expecting this outcome from the appointment, so I am really shaken up and concerned about this surgery. Does anyone have thoughts or comments to share with me? If anyone has undergone this surgery, it would be nice to hear from you; I would like to know what to expect!!

Thanks to All! D.

teteri66
02-23-2016, 10:34 AM
Welcome to the board. I am just reading both your posts so will try to answer your questions here.

Whenever spinal surgery is recommended, it is always a good idea to get more than one opinion. I always recommend an opinion from an orthopedic spine surgeon and a neurosurgeon. Even though their training is almost identical, the two specialties sometimes approach an issue from slightly different perspectives.

I know that it is important to decompress the nerves when myelomalacia is present. However if it is a very small amount, sometimes a doctor will not recommend surgery immediately, but will wait and watch the situation. I know there is a member of this site that has been in this watching situation for years, and has not yet required surgery. Hopefully he will see this post and respond, although I haven't seen him on lately.

Having not seen the MRI report, I cannot comment on how serious is your myelomalacia or whether you could wait awhile. Have you had symptoms for a long time? What are your symptoms and how much are they affecting your day to day life?

Triestina
02-23-2016, 01:32 PM
Thank you for the reply Teteri66! Let me answer a few of your questions:

I had an injury (fracture) to two of the cervical vertebrae when a box, thrown off the roof-top of a 5-story building, hit me on the head. Thankfully, it hit at a slant, so the damage was relatively small. This was 33 years ago. Since then, I have suffered the most excruciating pain in the neck, head, left arm and left hand as well. I have had several other neurological effects; which seem a bit better these days.

Twenty years ago, a neurosurgeon told me that I needed surgery to repair the damage, but he also mentioned that I had 50% chance of paralysis as a result of the surgery. Since then, my various Primary Care Physicians (lived in different parts of the country) have sent me to get more tests (X-rays, MRIs, etc.). Three years ago I saw a neurologist who ordered MRI, CT, EMG, and other studies. I was given Gabapentin for the gigantic headaches, pain in the neck and shoulder. Nothing was mentioned regarding any problem needing to be addressed. The diagnosis: Migraine Headaches from unknown etiology. So much for that!

You know, after so many years (33 in total) of living in pain, (I also have quite a bit of damage to the lumbar spine), you grow "accustomed" to both the pain and not receiving any medical resolution! Then, a few months ago I noticed that when I used a small back pack, I seemed to be able to "walk" with much less pain -- Maybe what I needed is a "back brace"! So I searched for a specialist in spine problems. I called a prominent orthopedic practice; the person who answered the phone told me that unless I wanted spine surgery, I should go to an orthopedic center specialized in non-surgical procedures (I didn't know they existed!). I did; the doctor ordered the MRIs of the cervical and lumbar spine.

I had a lot of questions about the results, which included the ones I stated in my first post, but also bulging of discs, herniated discs, etc. I also asked if I should perhaps see an orthopedic surgeon. The PA I saw said that if that is what I wanted, she would recommend a very well known spine surgeon who has a great reputation. By the way, I asked about the Myelomalacia, briefly addressed on the report, but I was told that she didn't understand the reason. It looked like the type of injury they saw in people who had a severe whiplash injury. But I shouldn't worry about it. (Really??)

So the bottom line is that the "pain in the neck" started 33 years ago; however, I don't know how long this Myelomalacia has been a problem. It appears it has been noticed in 2012 (when I had a previous MRI), I know this only because the radiologist making the assessment last week, stated that, "when compared the the previous MRI", it is more prevalent now.

Who knew anything was wrong?? Three years ago, the neurologist didn't tell me!

I am not able to do the surgery right away. I have travel coming up and will not be back until mid June. The doctor told me I need to be careful, and I need to do the surgery as soon as I come back.

I apologize for the length of this post T, but I wanted to be as clear as possible; I hope to have achieved that, without being too boring?

Thank you again T -- D.

teteri66
02-24-2016, 08:09 AM
A couple things: it should be clear to you that there is one truth related to those we spineys seek help from: opinions differ! Opinions differ greatly! If one has an issue that is not immediately obvious I feel it is necessary to go to a number of different specialists to begin to get an idea of what may be causing issues. Also in different parts of the country, the division of who does what differs. In some areas neurosurgeons seem to do most spine surgeries. In other areas, orthopedic spine surgeons have infiltrated and are equally considered.

In your case, I would suggest seeing a neurosurgeon if the first spine guy was an orthopedic spine surgeon for another opinion. If you receive conflicting advice regarding the immediate need for surgery, I would get a third opinion!

Here's what you need to know: cervical issues almost always take prescidence over lumbar issues. This (simply put in layman's terms) is because the spinal cord runs from the brain down to the beginning of the lumbar spine, L1 in most. The spinal cord is one of the main components that make up the central nervous system which controls ALL functions of the body and brain. As we know, if the spinal cord is badly injured, the area below the injury can end up paralyzed. Damage can be catastrophic and sometimes, life-threatening.

Since the spinal cord terminates at the beginning of the lumbar spine, lumbar issues, while very painful, almost never cause paralysis. One may develop foot drop, issues with bowel and bladder control, etc. but almost never paralysis. So, for these reasons, serious cervical issues take priority.

A PA who works in a spine clinic should know all about myelomalacia. As I mentioned, once one has a diagnosis of myelomalacia it needs to be watched. Surgery is not always necessary. Sometimes it doesn't progress. It is important to be under the care of a spine specialist who has your records and can follow your progress. I guess not all spine surgeons will do this. If you don't require surgery now, you are referred to another doctor. This was not my experience. I found a spine surgeon who managed my case for years.

Sounds like you have an interesting career. Hopefully it doesn't include skydiving, riding in bumpy vehicles across bumpy terrain, etc. You must treat your neck as though it is very fragile, remembering that myelomalacia weakens the spinal cord.

Triestina
02-25-2016, 12:20 PM
Thank you T for the great information and suggestions. I will go see a neurosurgeon for the second opinion (after I get back to the US). I will be in Europe in short order and see a neurosurgeon there too ... I will get a "flavor" of international medicine! ;-)

You know, I was very surprised that the PA at the Spine clinic, as well as the PA for the orthopedic spine surgeon, did not seem to be too concerned about the Myelomalacia. However, the doctor immediately noticed and told me how important and urgent it is to address the problem to try to avoid any further damage (I have neurological issues). However, he did say I can wait until I come back. I was ready to cancel all travels!!! The doctor said I didn't need to do so, as long as I would not do things to potentially cause further injury ... so no jumping out of planes or off cliffs!

Did you have this type of surgery? Or do you know someone who has? It would clearly help me to know what to expect!

Enjoy the day T!

D.

teteri66
02-25-2016, 03:54 PM
I have had three lumbar surgeries including two fusions. I don't know how "minimal" the myelomalacia might be. You might have some sort of minimally invasive surgery or it might need to be more surgery. It all depends on the surgeon's plans.

Triestina
02-25-2016, 06:37 PM
Thanks T. According to the orthopedic surgeon, I need a lumbar spine surgery as well. However, as you mentioned, the cervical issue takes precedence.

I don't think the cervical spine is going to be a minimum surgery; it will involve 3 vertebrae ... He said he would "pack" the space between vertebrae with a special compound and ground bone (mine). Very scary!

I am sorry to hear about your lumbar surgeries. Why did you have so many? I read that this type of surgery will cause damage to other discs and vertebrae above and below. Is this what happened in your case?

D.

Katrob56
11-07-2016, 07:48 AM
Have you had the surgery for myemolacia? I was recently diagnosed with this along with cord atrophy. I have been told that the surgery will not reverse the damage I already have, but it could prevent further damage. I am just tired of hurting.