Lori Ann Moreno - Multiple Angiomas, Two Surgeries 

"I was 52 when my whole existence as I knew it changed forever..."


It was 2009, and I was a 52 years old when my whole existence as I knew it changed forever.  I had begun to have periodic right temporal lobe headaches that would awaken me from a deep sleep.  All that I can say is that it was pain that was sharp and burning, and it made me have a feeling of impending doom.  Thank God these sudden spurts of excruciating pain only lasted for perhaps 30 minutes to 1 hour.  I had one other symptom also at that time, that I gave some insignificant excuse for-------the sudden inability to remain standing, lose balance, and fall to the ground.  The headaches frightened me, as they would reoccur about 2-3 times per week.  I noticed that I was having memory problems, but I decided that it was probably stress or menopause.  Fortunately, I had only fallen only once or twice within the period of a year.  I had no other symptoms but my doctor ordered a brain MRI anyway.  It showed a right temporal lobe cavernous hemangioma.  After being seen by a neurosurgeon, it was decided that it would be best to extract it because temporal lobe angiomas cause a high probability of seizures.  On the day of surgery I was started on Decadron and dilantin intravenously.  The surgery was unremarkable, successful, and I returned to work 3 months later without any further temporal headaches.

Now, it is June 2010.  I had a sudden episode where I could not maintain a standing position and I fell trying desperately to remain upright and keep my balance.  Unfortunately, I fell and began to have focal seizures in both my arms.  As I remained alert, all that I could do was realize that I could not move or stop my arms from contracting and shaking.  After approximately 2-3 minutes I was able to regain control over my body, get up, and drive home after having worked a 12 hr. night shift as a nurse.  I remained on prednisone 10 mg once a day, not as an order from the neurosurgeon, but from my rheumatologist.  I also suffered from rheumatoid arthritis.  I was nevertheless seen in the ER, but I was seen by a physician who denied that I had ever had a focal seizure, as I did not lose consciousness, bladder or bowel control.  As I felt that he was lacking knowledge as an emergency physician, I went to see a neurologist anyway.  He ordered an EEG and MRI's of the brain and thoracic spine.  After which they discovered a cavernous hemangioma in the anterior fourth thoracic spinal cord area.  From June to October of that year I desperately looked for a neurosurgeon who felt comfortable performing an excision of this hemangioma.  By October, I was feeling that my legs from the thighs downward, were enmeshed in hot coals.  Over the course of 2-3 months, my legs were weakening and I had lost my bladder and bowel control.  I was told that I was going to become a paraplegic without the excision of this marble sized cavernous hemangioma.  The surgery was that October and I was started on a rehabilitation program to regain strength in my legs.  I was using a walker and a wheelchair during this time.  I thought that I would gradually regain my strength, walk without an assistive device.  I was optimistic as I was succeeding in my bowel and bladder control program.

It is now October of 2012, and I was still on my road to recovery, except for a fall that caused me to break my left foot, left ankle, and left fibula.  The neurosurgeon forgot to tell me that there would be periods where signals might not get through the spinal cord.  When this happened, I fell straight to the floor, still trying to hang on to my walker.  As fate would have it, I began to lose bowel and bladder control again.  October 15, 2012 was the last day that I ever walked again..  Another MRI showed a second recurrent hemangioma in the center of T4.  After a second surgery on January 26, 2013, the excision of the hemangioma left me paraplegic.  All efforts for rehabilitation failed as there was no spinal shock, but continued paraplegia with all of the complications that accompany paraplegia.  I developed a stage IV sacral decubitus, and had to have an indwelling foley catheter placed for severe neurogenic bladder with retention.  Of course I developed my share of urosepsis (a severe illness that occurs when an infection starts in the urinary tract and spreads into the bloodstream), as I had to have a catheter.  By this time, just 4-5 months post surgery, no further aggressive efforts at rehabilitation were permitted by the insurance company.  Everyone gave up on me and only left me to receive only a few home visits.  Of course home health nurses had to come to treat my decubitus, check my vital signs, and check the urine appearance in the catheter.  I ended up having to, by May of 2013, consent to a reversible colostomy.  This was absolutely necessary as my bowel incontinence continually caused recontamination of feces to urine. 

Believe it or not, because of worsening headaches and moderate to severe thoracic pain, in May 2014, another MRI of the brain and thoracic area was done.  Oh no!!!!!  They have now diagnosed  innumerable angiomas all throughout the brain and a third recurrent cavernous hemangioma at the T4 spinal column.  The neurosurgeon stated that he recommends another brain MRI in a year from now, and he will not do anything regarding the thoracic hemangioma because, "The damage is already done."  I do not understand why there are no preventative measures being suggested.  He said that for the angiomas in the brain that grow, he will remove the reachable ones.  If they enlarge and are in unreachable areas, then he recommends radiation therapy.  I feel like a time bomb waiting to explode.  I suffer a great deal of pain from the thoracic hemangioma alone.  It is approximately one inch in diameter at present.  Unfortunately, my history has proven that they bleed, enlarge, and do enormous damage in relatively short periods of time.  Oh, I failed to mention that they also discovered a 3mm middle cerebral artery aneurysm, and a history of degenerative disc disease, s/p two anterior cervical diskectomies and fusion from C2 to C8 .  Wouldn't you know!!!  The fusion from C5&6 to C7&8 is showing signs of wear and tear, causing nerve impingement with horrible radiating pain down both arms and hands.  Why would I just want to watch the thoracic hemangioma bleed and enlarge, causing much more pain and sensory changes?  I still have some feeling from the waist down with no pain or temperature sensation.  Of course, from the buttocks downward to my lower legs, there is still that on fire/burning discomfort.

Well, this is my story.  Even though I have not been able to escape the damage that cavernous hemangiomas can do and have done, I will not give up hoping that maybe somewhere there is a treatment that can be tried  and maybe help me as I live in the final midst of this condition.  I have never even been able to get genetic studies.  I would think that studies would be indicated for such recurrent brain and thoracic spine involvement.  I will continue to stay positive even though I lost my career as a nurse and lost everything that I owned.  I am alone now in an assisted living place, but if the condition worsens, I may have to live in a convalescent home.  I would welcome any advice because I do not look forward to requiring total care at the age of 56 years old.  Thank you for reading my story.  And for all of you that are afflicted, NEVER GIVE UP HOPE!!!