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Thread: 25 yr old daughter with spinal hemangioma C3-4

  1. #1

    25 yr old daughter with spinal hemangioma C3-4

    Hi, I thought I would join to share my daughter, Lindsey's, story and to learn more from some of you here.

    Lindsey started having numbness in her left hand last summer. She went to her primary care physician, who suggested that she "had a pinched nerve, get a massage". Well, at least her technical diagnosis was correct!! She went on with her symptoms, though she started having more weakess in her left hand. Around Christmas time she started noticing numbness in her left foot and "stabbing pains and the worst sunburn feeling ever" all the way around her torso. Back to the doctor, then urgent care, then the emergency room. "Might be MS" was the only suggestion. She finally got an appointment with a neurologist who ordered an MRI. There plain as day was a "growth" spanning her spinal cord adjacent to C3-4. He referred her to a neurosurgeon, who never called her back, for what she understood as "some radiation treatments", we think that was gamma knife (not for this though). She finally got in with a neurosurgeon who recommended surgery that would be "life changing".

    We sought a second opinion and selected Dr. Ellenbogen, Chair of UW's neurosurgery department. Lindsey had an neuro angiogram on Feb 18th and it was determined the growth was a cavernous hemangioma. Lindsey coaches a 4A high school dance/drill team. March is their competition season and she had the surgeon convinced her surgery could wait until after the season. After we thought about it and she had continuing onset of symptoms, numbness in her right foot, she decided on surgery sooner instead of later.

    She had surgery Feb 26th at Harborview Medical Center in Seattle. Cervical laminectomy of C3 and 4 for access to the lesion. Immediately after surgery the doctor said he thought he would be happy with, "breathing and motion on one side", but she initially had motion in all limbs that he described as "amazing". He carried out before and after pictures, the after showing a hole in her spinal column which allowed you to see through it to the front side. In the next couple of days the surgeons told us they were "hopeful" of a full pre-op recovery, though Lindsey also suffered total loss of feeling on her right side and additional weakness on her left side. Brown-Sequard??

    She stayed two days in neuro ICU and was moved out onto the post surgery floor to wait for a room on the spinal rehab floor as she is now being treated as a spinal injury patient. The first rehab assessment on Fri Feb 27th was "I think you might walk, you have a score between a C and D". Does the score go to 'F". He didn't bother explaining the ASIA scale and was blunt with his assessment.

    Lindsey was moved to rehab Mon evening Mar 2nd. Tues she wasn't able to get out of bed due to low blood pressure when she got up. Wed they wrapped her legs and applied a torso girdle like a mini flight suit, this kept her blood pressure up and allowed her to start PT. She shuffled up and down the parallel bars a few times. Thurs the PT as her if she wanted to see how far she could walk back to her room. She made it all the way, about 175 feet. In the afternoon the PT asked her if she was ready to get into her wheel chair to return to her room. Lindsey asked if she could walk and she made it all the way again. Friday she was doing some walking laps and working on technique. Friday she also noticed heat on her right shoulder from a heating pad therapy during OT.

    Saturday she had a minor set back as she caught a stomach virus and put her down for the day, missing both PT and OT sessions. She missed the Dance/Drill district championships, her team won 1st place in the drill category and 2nd place in both Pom and Kick. She expects to walk into the state competition on March 28th. Today, Sunday, is an off day so hopefully she can get rested up for resumption of progress tomorrow.

    I have started a blog for her here: https://www.caringbridge.org/visit/lindseybeck

    Lindsey's story is a little different than the unknown injuries many of you have suffered, but it is now an injury, though surgically induced. I will continue to share her story and hope to hear from others we can learn from. I'm an engineer and like to plot function vs. time, with no answers for either axis, patience is the name of the game.

    Thanks,
    Doug

    Last edited by DesertBighorn; 03-08-2009 at 11:41 PM. Reason: Added MRI

  2. #2
    Welcome to our forum. I assume your daughter is at the Univ. of WA Hospital rehab center? They have an excellent reputation. You will have to help her fight to get sufficient time in the intensive inpatient rehab program, and to continue with a fairly intensive outpatient program. The insurance company will be your major foe.

    If you have read here much, you will know that it takes at least 2 years to determine how much she will get back in function. As an engineer you are probably used to dealing with non-biological systems more than biological, which are much more uncertain and unpredictable.

    If you are not familiar with the ASIA system used for naming and categorizing spinal cord injuries, I would suggest you read this article here by Dr. Young:

    http://sci.rutgers.edu/index.php?pag...nalLevels.html

    You may also want to take a look at this one about the vascular supply of blood to the spinal cord:

    http://sci.rutgers.edu/index.php?pag...CIschemia.html


    Please come back and post often, and get your daughter on-line here too.

    (KLD)

  3. #3
    Quote Originally Posted by SCI-Nurse View Post
    Welcome to our forum. I assume your daughter is at the Univ. of WA Hospital rehab center? They have an excellent reputation. You will have to help her fight to get sufficient time in the intensive inpatient rehab program, and to continue with a fairly intensive outpatient program. The insurance company will be your major foe.

    If you have read here much, you will know that it takes at least 2 years to determine how much she will get back in function. As an engineer you are probably used to dealing with non-biological systems more than biological, which are much more uncertain and unpredictable.
    Thanks for the quick reply. Yes, she is UW's rehab program. We were told her insurance would cover about 2.5 weeks in-house.

    As far as timeframe, we were told 95% return of function in one year and then 2 to 3% per year over two additional years. Is that in line with your two year comment above?

    Thanks,
    Doug

  4. #4
    Quote Originally Posted by DesertBighorn View Post
    As far as timeframe, we were told 95% return of function in one year and then 2 to 3% per year over two additional years. Is that in line with your two year comment above?
    That is extremely optimistic. I will hope that it is true for your daughter. I don't see how they can say 95% for an individual. Perhaps they mean that with this condition, 95% have significant functional return at 1 year? I have seen the full range with many not making any improvement, while most have some (but not near 95%), and the rare person who has that much return from vascular SCI.

    Keep in mind that without this surgery, it is likely that she would have eventually had a spinal stroke, with probably much more severe damage to the cord. Are they positive that all of the hemangioma was removed? If not, is radiation therapy being discussed?

    (KLD)

  5. #5
    Quote Originally Posted by SCI-Nurse View Post
    That is extremely optimistic. I will hope that it is true for your daughter. I don't see how they can say 95% for an individual. Perhaps they mean that with this condition, 95% have significant functional return at 1 year? I have seen the full range with many not making any improvement, while most have some (but not near 95%), and the rare person who has that much return from vascular SCI.

    Keep in mind that without this surgery, it is likely that she would have eventually had a spinal stroke, with probably much more severe damage to the cord. Are they positive that all of the hemangioma was removed? If not, is radiation therapy being discussed?

    (KLD)

    What I should have said was, 95% of what she would get back at 1 year and the additional 5% improvement over the next two years, not an expectation that she would be 95% of normal in a year.

    Agree, without surgery results would be "catastrophic or disastrous" per the neurosurgeons. I believe they got it all. She had a follow up MRI two days post op. Lead surgeon, Dr. E was out of town this week (our choice to proceed knowing his schedule) we will have more follow up in the next couple of days.

    I'll ask about follow up therapy and BTW, she has a second one further down her spine. I'll post an MRI view to my original post.

    -Doug

  6. #6

    Update - great progress

    Here is an update. Lindsey is progressing incredibly well. Dr. Ellenbogen stopped by tonight (he was out of the country for a week at a neurosurgery conference in Israel) and was blown away by her progress. I told Lindsey that if he showed up she should walk over and greet him at the door. We had a false start with that as a friend was putting her hair in a pony tail, so we asked the Dr. to give us a second. When we told him she was ready, they met at the door and he grasped her in a huge hug!!

    He told us that no way did he expect to see her walking when he returned. We are eleven days post op and her progress is amazing. She is slowly regaining some feeling in her right side, which is our biggest prayer right now. Dr. Ellenbogen described the surgery as removing the insides of an orange through the little stem without touching the skin.

    Lindsey also had her catheter removed as well as sutures today. She has normal bladder control and function, which started immediately!!

    She still has a long road ahead, but the outcome so far exceeds everyone's expectations that is familiar with this type of surgery.

    -Doug

  7. #7

    Update - discharged Mar26th

    Hi, just a quick update. Lindsey was discharged Mar 26th from the rehab unit at Harborview Medical Center, four weeks to the day after her surgery, and just in time for her to go to the WIAA 4A State Dance/Drill championships on Mar 28th with the team she coaches. That had a fairy tale ending with her team winning two state championships in Drill and Pom and a 2nd place in Kick. Lindsey also won the Washington State coach of the year award. She had to walk the length of the basketball floor to receive her award. I asked if she wanted to take the wheelchair we had brought for her to rest in and her quick answer was, "No". Her goal had been to walk into the state championship, and she far exceeded everyone's expectations with her abilities and progress in four weeks.

    She is living with us, she requires someone there "just in case" as she goes up and down the stairs and assistance bathing as she still has very little feeling on her right side. She is now in out-patient OT/PT. We had to petition her insurance company to get additional sessions as they had a very limited basic benefit for out-patient therapy ($1500). Lindsey continues to get stronger, with some sunny days (finally) in the PNW we are getting her out for walks around the block that take about 20 minutes. She has some tingling and slight sensations in her right arm and leg, but no great improvements yet.

    -Doug

  8. #8
    Senior Member fishin'guy's Avatar
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    Desert bighorn, hope things continue to go well. I went thru UW rehab at the University, great therapists. I'll tell you one thing that grips me is the insurance companies. I ran into an older (longer in chair) gentleman, and he said he was abhored at the fact the ins. co only allowed him 3 months when he went thru rehab. I informed him that mine was just 30 days, 18 months ago, he couldn't beleive it. Even my therapists said for an example, my discharge w/chair is not even close to what someone needs another month out.
    Your daughter is a shining example of hard work, i know how much hard work is involved, it is w/o a doubt the hardest thing she's ever done in her life. she will be a great example for many of her associates and students. Kudo's to her, and you guys for your support.None of us can do it w/o a ton of support and love. Good luck in the future a fellow n/w'erner enjoying the sunny Sunday.

  9. #9
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    I'm sorry your daughter & your family had to go through such a traumatic experience...I was there once, I had an injury at c4-5 when I was 17...feel free to email & ask questions you might have.
    Just try to take one day at a time.

  10. #10
    Four month update on Lindsey - she had a three month follow up with her neurosurgeon with an MRI on June 1st. He was very happy with the cross section views of her surgery site. His words, "Look, you have a spinal cord!" where it was once compressed paper thin. He confirmed that she is a traditional Brown-Sequard syndrome case with strength deficit on her left and sensory deficit on her right.

    In the past few weeks she has started to get some sensory perception back. It appears to be deep pressure sensation, not surface feeling. She can feel pressure when something is pressed into her skin on both leg and arm (from her foot and hand). She also has some hypersensitivity to cold on the back of her knee. All in all we are optimistic this is the start of continued improvement.

    She is up to running a mile on the treadmill and has learned to cope well enough to do all her basics like shave her legs, do make-up, get her hair in a pony tail and put her contacts in and get them out. Definitely good progress.

    She walked a couple of miles in our local 4th of July parade, with her drill/dance team of course.

    Happy 4th!

    -Doug

    http://www.caringbridge.org/visit/lindseybeck

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