SCI related to disseminated brain tumor

10-04-2004, 12:37 PM

Hi,

I'm new to SCI but my 11 yr old daughter has been battling a brain tumor for 5 years. In 2001 her tumor spread to several areas of her spine in the meninges, they referred to it as leptomeningeal dissemination. She did chemo and was stable for a while but last summer her tumors started growing again and caused her to loose function in her legs. She had to have whole spine radiation and the tumors have shrunk somewhat but now we are challenged with trying to regain function in her legs. Her neurologist said she will regain some function but it is questionable how much because of the damage to her spinal cord.

Anyone with a related experience? Also, I'm interesting in finding doctors/hospital in the midwest with a good SCI reputation. Any ideas?

Terry
Springfield, IL

SCI-Nurse · 10-04-2004, 01:46 PM

I don't have a lot of peds experience, but in adults with cancer, it is not unusual to have mets to the spine, causing pathologic fractures and compression of the cord with complete or partial paralysis.

How is her primary cancer doing? Is it in remission? Can she tolerate an active rehabilitation program at this time? No one can guarantee that she would get neurologic improvement at this point, but it would be important for her to have a rehabilitation program if her cancer is not interfering with a full program.

I would recommend the Rehabilitation Institute of Chicago and the Shriner's Hospital in Chicago as two excellent resources in your area.

(KLD)

10-04-2004, 02:12 PM

My daughter's primary brain tumor started in the cerebellum and right now is stable. She has what is considerable a low grade slow growing tumor (pilocytic astrocytoma). There is a very good chance her tumors will shrink somewhat or at least remain stable for a couple of years and hopefully longer. Other than some fatigue from radiation she has been feeling good and going to PT at the local hospital. It has been two months since radiation has ended and we have seen some improvement where she now has some movement in her legs.

I've studied up on brain tumors but SCI is new to me and not sure what to expect or if seeking SCI specialist would help in this case. Any thoughts?

Also, I just found an article about Dr. McDonald at Washington Unversity in St. Louis (which is only about 100 miles). Anyone with experience there?

Thanks,
Terry

SCI-Nurse · 10-04-2004, 06:04 PM

John McDonald has an excellent reputation, but I believe he recently moved to Johns Hopkins in Baltimore? You can contact the hospital to find out.

(KLD)

cheesecake · 10-04-2004, 06:31 PM

Dr. McDonald has gone to Kennedy Krieger Institute in Baltimore MD. It is a pediatric facility but he will be treating both adults and children. Dr. Ben Carson at Johns Hopkins is a world renown pediatric neurosurgeon.

In a recent conversation with Dr. McDonald, he was optomistic that the facility at Kennedy Krieger would be accepting patients in November.

"A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles"....C. Reeve 1998

10-04-2004, 12:37 PM	#1
Guest Posts: n/a	SCI related to disseminated brain tumor Hi, I'm new to SCI but my 11 yr old daughter has been battling a brain tumor for 5 years. In 2001 her tumor spread to several areas of her spine in the meninges, they referred to it as leptomeningeal dissemination. She did chemo and was stable for a while but last summer her tumors started growing again and caused her to loose function in her legs. She had to have whole spine radiation and the tumors have shrunk somewhat but now we are challenged with trying to regain function in her legs. Her neurologist said she will regain some function but it is questionable how much because of the damage to her spinal cord. Anyone with a related experience? Also, I'm interesting in finding doctors/hospital in the midwest with a good SCI reputation. Any ideas? Terry Springfield, IL

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10-04-2004, 01:46 PM	#2
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,367	I don't have a lot of peds experience, but in adults with cancer, it is not unusual to have mets to the spine, causing pathologic fractures and compression of the cord with complete or partial paralysis. How is her primary cancer doing? Is it in remission? Can she tolerate an active rehabilitation program at this time? No one can guarantee that she would get neurologic improvement at this point, but it would be important for her to have a rehabilitation program if her cancer is not interfering with a full program. I would recommend the Rehabilitation Institute of Chicago and the Shriner's Hospital in Chicago as two excellent resources in your area. (KLD)

10-04-2004, 02:12 PM	#3
Guest Posts: n/a	My daughter's primary brain tumor started in the cerebellum and right now is stable. She has what is considerable a low grade slow growing tumor (pilocytic astrocytoma). There is a very good chance her tumors will shrink somewhat or at least remain stable for a couple of years and hopefully longer. Other than some fatigue from radiation she has been feeling good and going to PT at the local hospital. It has been two months since radiation has ended and we have seen some improvement where she now has some movement in her legs. I've studied up on brain tumors but SCI is new to me and not sure what to expect or if seeking SCI specialist would help in this case. Any thoughts? Also, I just found an article about Dr. McDonald at Washington Unversity in St. Louis (which is only about 100 miles). Anyone with experience there? Thanks, Terry

10-04-2004, 06:04 PM	#4
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,367	John McDonald has an excellent reputation, but I believe he recently moved to Johns Hopkins in Baltimore? You can contact the hospital to find out. (KLD)

10-04-2004, 06:31 PM	#5
cheesecake Moderator Join Date: Aug 2001 Location: USA Posts: 7,522	Dr. McDonald has gone to Kennedy Krieger Institute in Baltimore MD. It is a pediatric facility but he will be treating both adults and children. Dr. Ben Carson at Johns Hopkins is a world renown pediatric neurosurgeon. In a recent conversation with Dr. McDonald, he was optomistic that the facility at Kennedy Krieger would be accepting patients in November. "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles"....C. Reeve 1998