Common Questions and Concerns
The following questions and answers were gathered by support group members over several chat meetings and email. They were answered by Dr. George Jallo, at John Hopikins Hospital, Baltimore, MD. Any further questions may be addressed to him at :
George Jallo, M.D.
Division of Pediatric Neurosurgery
Johns Hopkins Hospital
600 North Wolfe Street, Harvey 811
Baltimore, MD 21287
Tel (410) 955-7851
Fax (410) 955-7862
I’ve been diagnosed with a Spinal Cord Tumor (SCT), what can and should I do?
Most SCT are benign or slow growing tumors. Malignant tumors account for less than 10% of all these tumors. Once the diagnosis is made, you should see a neurosurgeon who specializes in these tumors. Most tumors are amenable to surgery and adjuvant radiation and chemotherapy are withheld.
What are my treatment options?
The only treatment for these tumors is a laminectomy (removal of the bone) and an attempt for a radical or gross total resection. Biopsy of these tumors is not justified unless the differential diagnosis is not conclusive.
How soon should I get treatments?
Since the majority of these tumors are slow growing or benign, treatment is not urgent for the majority of cases. One should research a center or surgeon who specializes or performs frequent operations. A cause for urgency is when the symptoms such as motor weakness or pain are rapidly worsening.
Is this a risky operation?
Yes, this is operation can be risky but at most centers who perform surgery in these region the risks are minimal.
What the medical future for the SCT?
At this time research is in spinal cord regeneration following injury. For SCT there is no medical therapy that will treat these tumors.
Are brain tumors and SCT tumors related?
Spinal cord tumors are similar to brain tumors. Both arise from the central nervous system. Both areas have similar tumors
What role does radiotherapy have in treating these tumors?
The role of radiotherapy should only be reserved for tumors which are malignant or those tumors which are not surgically operable. This accounts for very few tumors. Radiography should not be administered for intramedullary ependymomas.
How functional will I be after Spinal cord tumor?
Depending upon your functional status prior to surgery, most patients remain the same or get slightly worse for a temporary period of time. However, the majority of patients 2/3 to 3/4 will stay the same or improve in function following surgery.
How often do Spinal Cord Tumors re-occur?
It is quite unusual for spinal cord tumors to recur. Ependymomas usually do not recur. Astrocytomas or gangliogliomas can recur. This accounts for a small percentage of all tumors. The chance for recurrence can be 30% in 10 years.
Can Spinal Cord tumors spread?
Unless malignant most spinal cord tumors do not spread or seed within the central nervous system or in the body.
How many people are diagnosed with Spinal Cord Tumors each year?
Spinal cord tumors are relatively uncommon and account for around 1/1,000,000 individuals per year
What about pain, before and after surgery?
Most of the pain before surgery should improve with the operation. However following surgery some patients develop new numbness or tingling pain which sometimes is worse than the pain before surgery. These type of burning sensation is more common following epemdymomas than astrocytomas. It will subside over several months, but some patients may require medicine to help control this type of pain.
How do patients describe post surgical pain (not the pain from incision), but the central pain? What are treatment options for it?
The central pain is described as being hypersensitive or burning type pain. It more commonly occurs in patients with ependymomas. There are several medications which help this type of pain and research in spinal stimulation for severe pain.
What causes Spinal Cord Tumors?
No one is certain the cause of spinal cord tumors. There is an association of spinal cord tumors with neurofibromatosis.
I’ve been diagnosed with an spinal cord tumor. Where do I find a qualified neurosurgeon who specializes in this?
You need to speak to several surgeons and see how many procedures they have performed in this region.
What can I do to prepare for my surgery?
There is no special preparation necessary except to have an optimistic outlook and intense physical therapy
I’ve been diagnosed with a Spinal Cord Tumor and have no medical insurance. What should I do?
There are resources for patients with no insurance. You should talk to social workers in your area.
I have HMO Insurance, how can I get the surgeon I want?
Most HMOs will allow to go you to go out of network to see an expert. It will take several letters from your primary physician and out of network surgeon.
How often are MRI’s done after my spinal cord tumor is removed?
MRI should be done at 3 months,6 months and then annual for several years and then biannual or every three years but it depends upon histology and extent of resection.
What is the difference between Intramedullary and Extramedullary? Can a list of tumor types be categorized as to which are “extra” and which “intra”?
Intramedullary are tumors which arise from the spinal cord tissue itself. Extramedullary tumors are those tumors which arise outside of the spinal cord from nerves or coverings and push or compress the spinal cord.
Intramedullary: Astrocytomas, Gangliogliomas, Cavernomas, Hemangioblastomas, Ependymomas.
Extramedullary: Meningiomas, Schwannomas, Neurofibromas and other bone tumors
How often have you found syrinx associated with Intramedullary tumors? Even if the syrinx is decompressed during resection of tumor, can the remaining cavity continue to cause neurological deficits?
Cysts are present in 50-70% of all spinal cord tumors. Once the tumor is removed the cyst should decompress. Some patients may have some problems from the cyst re-accumulation however this is quite small.
What is the long-term outcome for patients with spinal cord tumors?
The long term outcome is good to excellent.
What kind of research is being done today on Spinal Cord Tumors?
The research for Spine Cord Tumors is about new surgical techniques only.
Will the nerve damage I have now ever get better?
Sometimes it will but others it will not.
How can it be determined if my tumor is benign or malignant?
Although most SCT are benign the only way for certainity is the microscopic examination by a pathologist after the tumor is removed.
Will I need any treatments after surgery?
Since most tumors are benign the only treatments necessary is physical and occupation therapy.
How soon should I start treatment?
These treatments are started in the hospital and then may continue as an outpatient or inpatient program.
How functional will I be after surgery?
In most cases the patients are out of bed in 1-2 days and then ambulating with assistance by day 3 or 4. Aside from the pain, the limitations vary from one person to another.
How does surgery affect respiration?
Surgery should not affect your respirations unless the tumor is located high in the cervical spine. In these cases there is a small chance of some respiratory compromise.
The back part of my vertebrae was removed to access my spinal cord and not returned. How will this affect me? Should I use precautions when physically active?
There are no limitations or precautions following removal of the vertebrae. However, in very young patients and particularly children there is a concern for progression of a spinal deformity which needs to be monitored.