Ependymoma Survivor 2004

[shelly]

I was diagnosed in July of 2004 with an intramedullary Ependymoma spinal cord tumor at c-3 to c-6. It was completely excised in August of 2004.

I had migraines for many years and doctors overlooked getting an MRI due to my stressful job and going to school full time. So, I asked someone to order it for me and low and behold... a tumor.

My neurosurgeon was R Patrick Jacob MD at Shands hospital in Gainesville, Florida. He performed a laminectomy at the site with no fusion afterward. He said the tumor was completely excised. I went home after 4 days and I went to outpatient rehab which they taught me to walk again. If it wasn't for God's amazing healing power and the use of Dr Jacob's hands, I'm sure I would not have had the best ending.

I continually had follow up MRI's every 6 months for 5 years with NO CHANGES.

When I first came home, I had alot of muscle spams in my neck and shoulders (of course) and the loss of sensation from my right hip down. I had a loss of sensations in my hands and left foot, but it returned within days. I have a fully functioning bladder and no other problems. My migraines have completely resolved. I do get some neck pain, post surgery, but nothing like I had.

I went back to work 5 months after surgery. I slightly pulled my right leg for a few months but then my knee seemed to start bending again so now I walk normal. Most people who see me cannot imagine what I have gone thru but I'm sure those who know me can see slight walking changes.

I would be happy to talk to anyone who has to go thru such a life changing situation. I can tell you about my surgery, how it worked, what Shands and Dr Jacob are like and that God has a plan for your life.

I am 5 years post op, my tumor was completely resected, and I have a small amount of loss of sensation in my right leg and foot, and a release from my neurosurgeon. I have worked ever since and I am back in school. Praise God!
Shelly

[tc]

Shelly, thanks for posting your information. As one of the pre-surgery people in this group, I'd like to know more of your pre-surgery details. How long did you have symptoms before your diagnosis? Were migraines your only symptom? You wrote that you had to learn how to walk again after surgery. Were you walking okay before the surgery? Any details that you care to share, I'm interested in hearing.
Welcome to the group!
Thanks,
Teresa

[shelly]

Hey, this is Shelly. I've never posted to these ?blogs so I dont know if I'm doing it right - but anyway ... I kept it short and to the largest points. I think when I actually wrote my story out a few years ago (as Linda asked), it turned into pages.

Pre -surgery - I had migraines since I was about 17 y/o. I took many, many meds and had a stressful job and I'm always in school, so the docs striked it off as stress and piled on the pills. I went to a neurosurgeon who was in the trials of Imitrex which then was a god send. I had migraines about 6-7 days a week w/ neck pain which wrecked alot of jobs and relationships. Most of my pain was unrelieved w/ meds, I usually threw up and went back at it. sad. The imitrex was seriously expensive.. so I didnt win.

Diagnosis: I've seen orthos, neuros, generals, you name it. I am a nurse so I have access to alot of opinions and Md's. As I said, they blamed it to stress and wouldn't order tests, so I finally asked my neurosurgeon for an MRI of my neck. He ordered one for my head and it was fine. I asked again for my neck. My neck was so stiff I couldnt hardly move it. After alot of negotiation... I got my MRI Cspine 7/2004. I got my diagnosis 7/2004 30 minutes later.

I went to Shands 30 days later. My neuro said that it will continue to grow and will cause neuro deficit. He said it must come out and it will. It was excised 8/24/04 with the usual cysts at both ends. Since it was in my neck, he did a laminectomy from c3-c6. I had terrible spams afterwards so of course you cant push up on a bed cause you cant use your arms. My right leg was completely unstable and my knee wouldnt bend. Once I came home, I used a walker to go to outpatient rehab and learn to stand w/out the walker, walk with out it and lean back with my eyes closed. i did stroke rehab. I have loss of sensation in my right leg, so I couldnt walk at first, I kind of would swing my leg. Then one day, my knee started bending again.

Symptoms: Neurologically I was 100%. Migraines debilitated my life for 20 years. I had a stiff neck daily. I had absolutely no physical issues going in to surgery, which my neuro said would be great since those symptoms that already happened, he couldnt fix.

It's been a long and heart wrenching ordeal. There are things that I cant do now, but at least I'm alive and healed. I followed up with my neuro for 5 years with twice a year MRI's (which I hate) and he released me in May 09. I also follow up with my ortho (friend of mine) to continually reassure me that everything is ok. I am thankful for the outcome that I did have and will praise God continually for this. I have waited 5 years to discuss, (to strangers) so I hope this helps someone else. I will be more than happy to discuss any details or questions anyone has via posts, emails, phone calls, whatever.
Thanks
Shelly

[rloregon]

I just wrote a long message and I don't think it got posted.

[Todd]

I had a 1in ependymoma at C7. Pre-diagnoses I had suffered from weak legs for years. Docs couldn't figure it out. It was only after I mentioned I had tingling in my fingers tips but only after I woke up in the morning did I get sent to a neurologist who sent me for a c-spine MRI.

I will save all the terrible details of finding a fantastic neurosurgeon for another post. My surgery was 3.5 hours, I spend less than 24hrs in ICU and 6 days in the hospital.

My NS did a lamenectomy from C5 to T1, he plated the vertibrae back on, no fusion though. I woke up with a significant loss of sensation from the chest down on my left side. No loss of motor function, just numb, feels like it's a sleep. tingly when I move my leg and my side feels like i'm wearing a tight rubber shirt. It's very strange but I am fully functional and walk just fine (took some time to get there and have a slight limp). Doc said it could take a year to get sensation back and whatever I had after a year would probably be what I would have to live with.

I was back at work after 4weeks.

The part of this I was not anticipating was the posture problem. I have a 6in scar on the back of my neck and my muscles are not yet restored, so, I suffer from forward head posture (which I hate). After surgery I couldn't lift my head up or raise my arms. I had about 4weeks of physical therapy to strengthen my back and arms and to work on my head posture.

After about a month out of therapy I decided to go back to therapy to get the muscles in my back worked on. I found a therapist specializing in active release technique to work out all of the bad spots in my muscles. this was excruciating but necessary. now that my back is free of knots and adhesions, I am back in the gym working on strengthening my neck muscles.

it's apparently going to be a long road to recovery and I am unsure if I will ever be what I was but i'm not going to settle for less than what I can be now.

i'll save the whole story for the story section.

If I could provide any advice to people pre-surgery, I'd say ask about the impact of the surgery on the muscles and recovery from that. The focus is often on the tumor and the surrounding bones. The muscles are what are going to get you back on your feet. Definitely find a therapist who is trained in active release technique. This will help with breaking up underlying muscle adhesions and help your muscles activate properly. It will also help with underlying scar tissue.

Todd

[shelly]

When was your surgery?

[Todd]

my surgery was March 4th, 2009. It's been nearly 6mos.

sounds like the location of your surgical site is very close to mine. did you have difficulty holding your head up? did you have a problem with forward head posture?

[josh Oregon]

Im scheduled for surgery on the 8th of sept. I have a what they think is a ependymoma inside of cord, near c3, approx 1.5 cent. I was just curious about your recovery? Who did your surgery? How many had they done? Im going to UCLA.

[shelly]

I did not have trouble with holding my head up. The NS did a laminectomy at c3- c6 where the intramedullary tumor was and did not insert anything else nor did he fuse. Of course I couldnt pick up my head off the bed, at first, due to the surgery itself nor could I lift my arms without spasms, but I did move my arms and my head is fine within a few days. My only post surgical symptom 5 years later is the numbness or tingling in my right leg including the foot with loss of sensation.

I live in the panhandle of Florida and I went to Shands.

[Todd]

Josh, I had my surgery done by Dr. Mark Burnett with NeuroTexas at St. Davids in Austin, TX. He sees these fairly regularly. When I went to see him 2 mos after surgery he told me that he had done 3 others like mine.

I would think UCLA would be a pretty good place to get it done. If I had had unlimited resources, I probably would have gone to the Mayo clinic or the Barrow institute. My NS was Barrow trained, so, I felt pretty good about his skills.

not sure how big of a cut they are going to do for 1.5cent. Mine was 1 inch. My biggest problem is the muscles adhesions due to the cutting through the docs had to do.

my advice, once the area is ok to touch, get to a therapist who is trained in active release technique. You can ask them. They should all know what it is as it is what all sports stars get to keep them going after surgery. But not everyone is trained on it. This therapy breaks up the adhesions and gets the muscles activating properly. If the muscles aren't activating properly, then your therapy won't do you much good in the long run.

I will say, that the active release technique is quite painful. You'll have to grit your teeth through the pain. I went twice a week for 5 weeks (allowing at least 2 days between sessions to heal). The results are stunning. My personal trainer can now assist me in getting a muscle routine to work my muscles. Before, my routine was ineffective due to the muscle adhesions.

take care and good luck.