Stopping Hemangiomas of the spine

[infoseeker2]

In January of 1999, I began experiencing numbness in my left foot.  By April, it moved up to my lower trunk.  In May an MRI showed a dumbbell shaped tumor compressing the spinal cord at T2 and extending into the chest cavity from C5 to T5.  In June a spinal laminectomy was performed.  They were able to remove the part in the spinal column to relieve the pressure on the spinal cord but not the part in the chest.  The pathology on the tissue indicated a neurofibroma schwanoma.  After the surgery most of the numbness receded except for part of my left foot.

In December, a thoracotomy was performed to remove the tumor in the chest.  The pathology was changed to hemangioma.  This surgery also removed part of the sympathetic chain on the left side that had been engulfed by the tumor.  A follow up
MRI in November of 2002 showed some changes at T2 including some tissue extending into the spinal canal contacting the cord.  Another MRI in May 2003 did not show any major changes from November 2002 but some incremental change from a November 2001 MRI.

The consensus is that the hemangioma is still there and growing throughout the entire T2 vertebra as evidenced by its appearance on the MRI.  The primary option I am being presented with is surgically removing the hemangioma and the  vertebrae and replacing it with bone from either a bone bank or my thigh (very high risk; therefore it is being followed closely with MRIs) Since I am functioning well neurologically, I would like to find out if there is an alternative to slow or stop the growth.    I have read about radiation,  ethanol, and angiogenesis treatments to stop hemangioma growth.  Are any of these options in my case?  What facilities in the US have experience with them?  

[CCF-Neuro-M.D.-CS]

Hemangiomas can be treated with surgical excision, endovascular embolization (using a catheter to stop blood flow to the tumor), radiation, or sclerosis (injection a caustic agent such as ethanol). The modality used for a particular patient depends on the size, location, and neurologic status. Therefore I can not advise you regarding which modality is best. I would recommend that you have a second opinion at an academic spine center. We have an excellent spine center, and I would particularly recommend either Dr. Benzel or Dr. Kalfas. They are both well known spine neurosurgeons with many years of experience. Good Luck.

[mnguy]

I read with great interest your history. My symptoms had been very similar to yours. I had a hemangioma at T3. My first surgery was a laminectomy (T2-T4), and decompression of the spinal cord, removing as much hemangioma as they could. This was followed by vertebroplasty of T3, injecting it with a plastic to displace tumor and strengthen the vertebra.

After a few months, I returned for more surgery. A small amount of the plastic had escaped and was compressing the spinal cord, and the hemangioma had continued to grow.

Two years later, symptoms reappeared, and it was round 3 of surgery. Plan was to remove the vertebra and replace it with bone from my hip. Complications during surgery made this impossible, so they removed tumor they could see, and did further decompression. This was followed by radiation to scar the tissue, and prevent future growth.

It has been two years since this was done. I have two MRI's which show no new growth to date. I know this offers no future guarantee, but it seems to have worked this far. I have some numbness in my toes and ankles, either from spinal cord damage or the effects of radiation.

Just thought you might like to hear someone else's story. Good luck on your journey.

[nikki1028]

A related discussion, I would Like someone to tell me what my MRI means was started.