Questions about Delayed Radiation Myelopathy

[hbnd4]

Hello,

I am new to this board and was hoping to get some feedback on Delayed Radiation Myelopathy.

I had a spinal ependymoma grade 1 removed via laminectomy in June of 2007. I then received radiation therapy for residual tumors in October of 2007. To be completely honest, I was totally unaware of some of the potential long term problems associated with radiation therapy and am now pretty scared as I read more and more.

From a few of the studies I've read, most people begin suffering symptoms of neurological deficits in the 3-8 year range after treatment and there have been some outliers with people suffering from Delayed Radiation Myelopathy as long as 10 years after treatment.

My questions are:

1) Is DRM something that will eventually happen to all people who receive radiation treatment? Or does it only happen a percentage of the time?

2) If it does not happen to everyone, what is the percentage of people that usually suffer from this?

3) If you make it past the 10 year mark does the probability of suffering from DRM decrease?

4) Is this condition progressive? And if so, how quickly does it usually progress?

5) Is there any correlation between the age of the person when they received treatment and the probability of suffering from DRM? I received the radiation when I was 23 years old and I don't know if this would make my chances of suffering DRM more likely or less likely. I'd hope that because I was on the younger end of things, my body could take more radiation and not be affected (as much) by it but I also realize that sometimes people don't suffer from DRM because they did not live long enough to experience this.

[Linda51]

Hello hbnd4,

I have had radiation and it been 17 1/2 years for me. I have seen in my medical records I have Myelopathy. I was 30 years old when I had radiation and now almost 48 years old. Sometimes I have heard the words spinal cord disease, spinal cord atrophy, spinal cord damage at my doctor appointments. I had 33 treatments and that all I can ever take.

I am still moving around and not sure if I want to know what the radiation effects can do or has done to my body. I do know in 17 1/2 years I haven't had any tumor growth, can breathe, take care of me, drive, walk, move around. There some things we can't change.

~Linda

[hbnd4]

Linda,

Thanks for your response.

If you don't mind, would you be able to provide some more details about your myelopathy?

Have you had the same symptoms for 17 1/2 years or has it been something that has changed over time?

Also, while I understand that you are not a doctor are you implying that DRM is something that is going to happen to all recipients of spinal radiation treatments?

I have my appointment set up with my radiation oncologist in a few weeks but I am just really stressing out over all of this stuff I am now learning about.

[Linda51]

Honestely, I can't tell I have it. I had MRI's for the first 10 years, then I took 5 years off from that and it been 3 years since I had one. I still have the same issue as I did after my first surgery. In my case, I have had 2 surgeries an also a fusion from C2-T2 and then 6 months after my 2nd surgery had the 33 radiation treatments.

I have been told my spinal cord is just hanging on by a thread in some places. From what my surgeon has told me I already had spinal cord damage before my first surgery. It took me 5 years to get diagnosed and the tumor was large. I have right side deficits and a little bit on the left side. There is issues of numbness, pain, tingling, bladder problems, headaches, spascity, my body has the jerks, weakness but all of these are complaints from other survivors with no radiation.

Everyone is different when it comes to the radiation treatments and the way they do it has come along way even from 1995.

To me it seems like your MRI would tell your doctor if you got it. Will you get Myelopathy? Your doctor nor I can't answer that. The best thing to do is talk to your radiation doctor and try not to stress over what you read on the internet or on the forums. You may not get this and as I have said up above I can't tell I have it and haven't thought about it in years until just now.

Take care of yourself by not stressing over this. Life goes on........

Here is a website that explains it pretty good. www.knowyourback.org/pages/spinalconditions/degenerativeconditions/cstenosis_myelopathy_radiculopathy.aspx

[hbnd4]

Linda,

Thanks for taking the time to answer these questions as your words are very reassuring. I have recently been attempting to get life insurance for myself to cover my pregnant wife and I have been denied by about three different companies. For some reason this has really bothered me and has caused me to stress out and get very upset about my condition. I've been proactive about my health and I've done everything the doctors have told me to do and at some point I just have to trust the professionals...

At the end of the day I just need to realize that life is short and I need to enjoy every day that I have on this Earth.

Thanks again.

[Linda51]

You are very welcome!!! I do understand where you are coming from. In my early days I did the very same thing. We are people who worry or stress out over things we can't do anything about.

Take your energy you have and concentrate on that new baby. He/she will need their dad and your so right life is short. Have you try Colonia Penn whole life ins?? The younger you are the better deal you can get. I have been looking into some life insurance for my mom. She got some but they were trying to get some cheaper insurance but do to her age (80) she needs to stick with what she got.

Good luck with everything and hang in there and keep your chin up!!!

[moyna]

Hi, I had mantle radiation for hodgkins lymphoma in 1990 when I was 25. 20 years later I started to get spasticity in right leg. After MRI MS was ruled out I am told that I have delayed radiation myelopathy! Seems to only affect right leg and balance. This is very unusual for the treatment that I had because the radiation was not directed at spine. It is gradually getting worse and I am wondering if it will plateau.

Moyna

[Aceelijah]

Hi I was 24 when I first found a small lump in my upper right chest, when removed and tested was told cancer, was treated with chemotherapy then 18 days radiation. 3yrs later cancer came back in right breast did not get chemotherapy because blood count was still low from first treatment, but was again given 18 days of radiation and was given to stop my ovaries as well. I am now 45 and have noticed weakness in both arms and legs, lower back pain, shoulder and arm pain on left side, pins and needle in legs, body jerks. headache,and trigger fingers in both hands. I can write but it gets scribbled up in the process. I stumble at times. I feel as if I have a sore in my stomach left side, try to walk upright but have to yield to the discomfort but all seems to go and come. MRI has shown nothing but a 5 mm nasopharyngeal mass. C4/5 C5/6 small disc protrusion. yet the doctor can't find anything wrong, one Dr thinks it maybe Delayed Radiation Myelopathy but the neurological Dr thinks not. Can it be? am due to have a ct scan done.I know it is not in my mind not so much pain and suffering.

[peaceandlove]

DEear hbnd4,

Until now I don't know why they do radiation and when?
Is it required for grade 1 tumors which don't grow fast. Please advise if you can why they do radiation.
as far as I know, radiation is done for cancerous tumors.is It yours?

Thanks