Myelomalacia - I'm scared

Susie, thank you so much for your great advise. Thanks to you and others, I went in to the surgeon's office ready to kindly say I wanted a second option if he said surgery!

He walked in smiling and apologized for the rescheduling which I had to do last week. He said I could feel at ease because the radiologist had "over-read" the MRI and the white spots suggesting meyalomalaciai was nothing to worry about, did not represent softening of the spine, nor was the flattening of the spinal cord anything to be concerned over because this wasn't the case.
He went on to explain everything to me and even said that my spinal cord had MORE space around it then the average cord!

He even said he'd welcome another NS's opinion - that any doctor who got in a tizzy over a patient requesting a second opinion had something to worry about!

He talked to us for at least an hour and I left there thanking my God for this unexpected and wonderful news.

I can't thank you folks enough for having helped me when I was in total darkness about the results. I love all of you!

Blessings,
Mary

Awesome news!! So very glad you can put that away and get back to enjoying your days.

Mary, now you can go on about living again & not being in fear. Something you may want to consider not just for yourself but others too. Granted this radiologist is human too, however, this is twice he has buggered up reading xrays with you. I would be very much inclined to file a complaint against him with the radiologists board. You can go online & get that info. I don't know if this person needs more schooling or what, but something is not right with this radiologist. Thankfully your dr is well versed in reviewing films but not all drs are & this could have ended badly for you. I am not a vindictive type of person but something is wrong here.

I do hope you will continue to hang out with us & let know how you are doing.

Hi, I'm a new member - Martin. I found this site whilst searching others with Myelolamacia. Only to discover that you have resolved your issue. I can certainly understand the panic you had - this word does not have a good reputation.

I had two tumours on my spinal cord, one was pressing so hard that the cord was squashed hard against the side and was barely visible. Without removal I faced imminent paralysis. They also found a cyst in my lumbar and conducted surgery there tool.

Chronic pain is my lot. I am on so many painkillers I rattle when I walk - lol. Anyway just recently I had my second followup MRI & CT scan and it was concluded I had growing myelomalacia. Surgery is not anything they would consider unless life threatening - paralysis of breathing muscles. I expect that I will be paralysed at some point as my symptoms are getting worse. I an incontinent bowel and bladder, I cannot distinguish hot from cold, sharp from blunt - from T2 down. My arms, hands, legs etc twitch. The soles of my feet are so sensitive I can sometimes not walk on them. Occasionally it feels like I am walking through a sea of honey, other times my legs or hips feel like they weigh a tonne. Nerve damage, progressive or permanent is an ever-changing feast.

Please .... anyone considering spinal surgery ..... make sure it is absolutely necessary/last resort. I have had 3 and spent 4 months in hospital. Most of that time was in rehab learning to walk again but always always in pain.

Bottom line .... I am not scared of Myelomalacia, paralysis, death or pain. It is just nice to connect with others who understand the roller coaster that is chronic conditions. And most importantly is the fact that You often learn more from the forums than you do from a 15 min appointment with your neurosurgeon.

Hello Talis & welcome to the chronic pain forum. So sorry to read what you are dealing with, I cannot imagine it at all. In deed Mary was very fortunate that the neurosurgeon knew how to red an MRI film.

Talis we do ask all new members to make a separate intro post so that all members will see it & be able to say hello & welcome aboard. By posting on Mary's thread not many people will see your post & we don't want to highjack Mary's thread, lol.

What you have written above would make a perfect intro post. To start your own thread look to the left & click Post New Topic. Thanks.