Medulloblastoma-PostOp

Cracker1

I'm new to this so here it goes...In 1985 I was diagnosed with a malignant brain tumor (Medulloblastoma) at 15yoa. Surgery (@ Shands Hospital Gainesville) was successful in removing 99% of the the tumor and radiation therapy took care of the rest. In addition to brain radiation, my spine was radiated as well as this type of tumor commonly spreads and/or reappears on the spine. I have been cancer/tumor free for the past 26yrs and remain so to date; HOWEVER, approximately 5yrs ago I began to notice a number of significant developments which have brought me here today. I have significant hearing loss in my right ear and continuous ringing in both. I have lost almost all sense of balance and the slightest shove or bump will cause me to tumble. I have lost a great deal of coordination and motor skill making normal activities like walking, biking, running, writing, brushing teeth, and speaking difficult. Over the last several years, these things have become more obvious to others and are beginning to affect my job. In 2008 I had an MRI which showed mild tissue and blood vessel damage/constriction around the surgery site; However, it was categorized as "consistent with surgery and post op treatment". NO signs of any new tumor growth were found. In 2011 I had another MRI which showed the same and concluded visible damage was caused by the tumor itself, the surgery to remove it, and the radiation which followed. Again, the damage was classified as mild, consistent with surgery and post op treatment, and showed NO sign of progression from previous MRI and NO new tumor growth. Also in 2011, I met with the Chairman of Neurosugery at Shands Hospital in the hopes of obtaining some type of explanation for my symptoms and a treatment. In short, I was told I should feel lucky to be alive and there was nothing that could be done and I should try to learn to live with the symptoms. Having researched this on my own, I have learned these types of symptoms are relatively common and can, as in my case, manifest themselves decades after the surgery. My problem is that I am finding it more and more difficult to perform daily tasks required to perform my job and am worried about being able to support my wife and children. As it is, I have difficulty putting my pants on without supporting myself against a wall or I chance falling over. What is most troubling to me is that there seems to be no definition of what this is, no name , no official diagnosis, and apparently no treatment. Is there anything I can do?

connsteele

Your case is so like my
Your case is so like my son's. He too was diagnosed with a medulloblastoma in 1985. He was 8 years old. He had surgery, which removed "everything the surgeon could see" (whatever that means), cranial-spinal radiation, and chemo (CCNU, prednisone, vincristine).

The primary long-term effect was on his pituitary gland. This included being growth hormone deficient. His adult height was 4'9". He was also thyroid and adrenal insufficient, which required daily medication. He was on growth hormone from age 10-12, which didn't really do much, except cause him to become a type 1 diabetic. He also had some mild learning disability, especially in math. Despite these challenges, he went on to live independently, go to college, and get a good job for the Department of Defense in Washington DC (we live in Ohio).

But in April of last year (2011) we got a phone call from him and could tell something was seriously wrong...confusion and speech. He lived alone so we hurried to Virginia to see what was up. In the emergency room, he had a cat scan and MRI and we were told that there was increased swelling of the brain in the area where the tumor was. It could be caused by either a tumor or radiation necrosis.

Turns out he was diagnosed with another type of brain cancer...anaplastic astrocytoma. The docs were clear that the tumor was caused by the radiation he had when he was 8 and that treatment would not make it go away, just slow things down. Surgery was scheduled but the surgeon could only get enough tissue for a biopsy. Our son had the option of going for more radiation, but at a reduced dose than is usually given for this type of cancer. Remembering how hard it was on him when he was 8, I didn't want him to have it, but David wanted to fight it all the way, so he underwent another course of radiation. It was really hard on him. He also underwent chemo both there and back here in Ohio as he was too debilitated to live independently.

David passed away about one year later (April 14, 2012).

I think it's good that your MRIs aren't showing tumor growth but I empathize with the frustration you are feeling of not being able to get a solid answer. I think "just living with the symptoms" is not an acceptable answer.

Have they mentioned radiation necrosis? My understanding is that it can be treated. I would definitely go to a major brain cancer center for another opinion (eg. Duke, NIH, MD Anderson, Cleveland Clinic, Ohio State, or any other major research/teaching hospital). According to our son's doc at Ohio State, they are seeing more and more late effects in childhood cancer survivors and it is an area of medicine that is just emerging but still lacking. He said all childhood cancer patients should be followed for the rest of their lives. Something we sure didn't know, although I don't know if the final outcome would have been different. Who knows for sure.

I sure wish the best for you. Don't give up.

Connie

Cracker1

connsteele said:

Your case is so like my
Your case is so like my son's. He too was diagnosed with a medulloblastoma in 1985. He was 8 years old. He had surgery, which removed "everything the surgeon could see" (whatever that means), cranial-spinal radiation, and chemo (CCNU, prednisone, vincristine).

The primary long-term effect was on his pituitary gland. This included being growth hormone deficient. His adult height was 4'9". He was also thyroid and adrenal insufficient, which required daily medication. He was on growth hormone from age 10-12, which didn't really do much, except cause him to become a type 1 diabetic. He also had some mild learning disability, especially in math. Despite these challenges, he went on to live independently, go to college, and get a good job for the Department of Defense in Washington DC (we live in Ohio).

But in April of last year (2011) we got a phone call from him and could tell something was seriously wrong...confusion and speech. He lived alone so we hurried to Virginia to see what was up. In the emergency room, he had a cat scan and MRI and we were told that there was increased swelling of the brain in the area where the tumor was. It could be caused by either a tumor or radiation necrosis.

Turns out he was diagnosed with another type of brain cancer...anaplastic astrocytoma. The docs were clear that the tumor was caused by the radiation he had when he was 8 and that treatment would not make it go away, just slow things down. Surgery was scheduled but the surgeon could only get enough tissue for a biopsy. Our son had the option of going for more radiation, but at a reduced dose than is usually given for this type of cancer. Remembering how hard it was on him when he was 8, I didn't want him to have it, but David wanted to fight it all the way, so he underwent another course of radiation. It was really hard on him. He also underwent chemo both there and back here in Ohio as he was too debilitated to live independently.

David passed away about one year later (April 14, 2012).

I think it's good that your MRIs aren't showing tumor growth but I empathize with the frustration you are feeling of not being able to get a solid answer. I think "just living with the symptoms" is not an acceptable answer.

Have they mentioned radiation necrosis? My understanding is that it can be treated. I would definitely go to a major brain cancer center for another opinion (eg. Duke, NIH, MD Anderson, Cleveland Clinic, Ohio State, or any other major research/teaching hospital). According to our son's doc at Ohio State, they are seeing more and more late effects in childhood cancer survivors and it is an area of medicine that is just emerging but still lacking. He said all childhood cancer patients should be followed for the rest of their lives. Something we sure didn't know, although I don't know if the final outcome would have been different. Who knows for sure.

I sure wish the best for you. Don't give up.

Connie

Connie,
Thank you for your
Connie,
Thank you for your reply and I am very sorry for your loss. I have communicated on other discussion sites but have never been contacted by anyone with a similar situation. I think what is most unique in my case and at the same time most troubling is that I have had barely a cold in the last twenty years since my surgery and treatment. After my surgery, I graduated High School on time, earned a BA in Psychology, and graduated from the Police Academy. I have worked (and continue to work) in Law Enforcement for the past 18yrs and physical agility, writing, and speaking are a big part of the job. Slowly but surely my faculties seem to be deteriorating. I have read a great deal about radiation necrosis; However, it has never been mentioned to me by a doctor. I too have read it is treatable and have read many good reports regarding Hyperbaric Oxygen Chamber therapy. I have also read other reports claiming it does nothing and many insurance companies do not accept it as a recognized treatment and will therefor not pay. Radiation necrosis appears to be a difficult diagnosis to make as there are so many variations in the symptoms, many of which mimic other conditions. I guess I just need to find the right doctor. Anyway, thank you again for listening. It helps to just vent a little.