Spinal cord injury from tumor pressing on spinal cord and now bilateral paralysis.

[chalaan]

Hello All,

I am sad to report that my brother is paralyzed from the waist down from a spinal cord compression. This had been going on for days, while he was in the hospital, but his pain symptoms were not taken seriously. He had surgery to remove the tumor 1 week ago, but he has not gained any feelings back.

Now, since not all of the tumor was removed, they want to do radiation. I just do not see the advantage of this at this point and I am afraid that radiation will cause more damage to the cord than do any real good.

I think that he would be better off in a rehab such as Spaulding in Boston, now to try to hopefully help with the spinal cord injury.

Any thoughts? Thanks.

Has anyone had a similar experience?

[patandemma]

I am a physician but NOT a neurosurgeon or radiation oncologist. I suspect the surgery decompressed the pressure on his spinal cord even though it did not completely remove the tumor. It is known that people can recover function (at least to some degree) but it can take a variable amount of time. If his neurosurgeon feels he has a reasonable chance to recover useable function,by all means radiation should be considered to deal definitively with remaining tumor. What kind of radiation modality? Depends on what's available to you w/r geography and insurance. I am very prejudiced in favor of proton bean therapy because of my own experience w/a tumor threatening to cause cord compression.

I do know from my own case when PCa was ~ 1 millimeter from touching my thoracic cord I was told I needed urgent electron beam therapy (EBT) or surgical removal of the tumor and put off ADT and Docetaxel until I was fully healed. I was not in favor of EBT because it has such a wide field of radiation (in my case heart,lungs,esophagus,stomach,sternum) and they would have to use PALLIATIVE (NOT DEFINITIVE) doses for cord related tumors due to its imprecision.

I had a 2nd opinion consultation with a different radiation oncologist who told me proton beam therapy (PBT) could be done very effectively BUT the tumor was too close to the cord to do safely w/o radiating the cord itself. He needed ~ 2 millimeter separation. PBT is exquisitely precise and controllable. He recommended go ahead with ADT and Docetaxel and see him again after my 6th Docetaxel cycle and if I had any neurological symptoms in the interim a decompression laminectomy was all I needed w/o attemptng surgical removal of the tumor.He was very confident ADT & Docetaxel would shrink the tumor enough so he could use DEFINITIVE ( NOT PALLIATIVE) doses to the tumor and the affected vertebrae and the prostate primary. He proved to be correct. I have had no radiation related problems other than radiation cystitis (which resolved superbly with a series of hyperbaric oxygen treatments)

[chalaan]

Hi, they know they did not get it all. The hope was to relieve the cord compression but the surgery did nothing for that. Radium 223 was brought up but dismissed for some reason, but that was last week before the surgery. I even wonder if the tumor is prostate or is from previous radiation. Thanks for bringing up the radium 223 as I will revisit that.

[sheba5625]

I had that diagnosis I am not paralyzed however it took a year for them 1 year to find out my condition I had been to all kind of doctors and they too did not take me seriously I had spasms unable to drive back pain one nurse told my son that it is all in my head I hope you go out for the doctors that let this go on for so long because this could have been prevented

[chalaan]

Thanks for your reply. My brother has undergone 14 radiation treatments (palliative). He is still paralyzed. No, I have not gone after the doctors who could have prevented this and no, no doctor has apologized. Only 1 doctor referenced the mess-up by saying that "they all got lulled into a false sense of security when the CT scan showed nothing pressing on the spine". Of course this doctor uttered the statement and also was not involved. So far radiation has not helped and the next step proposed is chemo. I am not sure why radium 223 is not being offered, but I will ask again this week. My brother is still in the hospital only because we fought them as they wanted to discharge him back to the rehab that also failed him. Yes, I think that it could have been prevented.

To be concise, the CT scan did not show it, but an MRI scan did.

[Charlean]

I have not been on here for awhile but I just thought I would check up. I am sorry to hear of your brothers paralysis. As you may have read, my husband suffered a similar situation. I wanted to tell you that he did the 6 months of Xofigo just prior to his paralysis, which not only caused him more severe pain but did nothing to stop the inevitable paralysis from the chest down and it did not help the mets. He had asked to stop it after the 4th month because the pain so so unbearable for him, worse after each treatment, probably because he had the tumor on his spine and it was angry. After the surgery had been delayed 4 days due to doctors wasting time checking him for a stroke because he couldn't walk(both legs of course, which is not a sign of stroke), the neurosurgeon did the surgery but told us that you have 72 hours after the onset to regain much use, if any. Since it had been longer, my husband never regained much of any movement and could not walk. He also received radiation several months later because they told us it would return, which put him in the hospital for 11 days due to them burning his espophogus so badly that he had aspiration pneumonia, lung embolisms, deep vein thrombosis in his thigh, couldn't eat or drink for nearly 3 weeks, and many other problems...and spent the next 3 months in rehab before returning home for a brief time prior to passing away. I was there every single day and had to remind each nurse almost daily of his needs because they don't know really how to care of someone who is paralyzed. THe radiologist told us that due to the paralysis, the life expectancy for him was up to a year with 6 months being the average. So many things can then occur due to the paralysis, MERSA infections in the bladder which he got at the hospital, bed sores because they neglected to turn him every two hours as required, autonomic dysreflexia which happened repeatedly when his catheter got pinched several times in bed if they didn't watch it when turning him, things like that. I am sure that many people would say I am a bit too negative but I would say that Xofigo will not help him and I would agree with you, radiation can be very dangerous so be careful who does it. Chemo at this point would be so devastating on him that I am not sure how well he would be able to handle it. They told us no way, even though we were not wanting to do it.

I am also not sure how long it took them to do your brothers surgery but it seems that it was quite a few days so if that is the case, it will most likely be very difficult to regain his leg use enough to walk. I am sorry that they didn't take his pain seriously enough in the beginning just like they didn't for my husband. It is so disgusting to me to hear of so many who are paralyzed like this and yet Drs. never told us of this possibility as though they don't know anything about it. I have tried to make my story known as best I can because it is NOT as uncommon as one would think. As far as the pain meds, I wouldn't worry about if he is addicted. It really doesn't matter. However, what helped my husband was cannabis oil. It helped him in many ways. I have posted this previously as well. I hope that I am wrong about the prognosis but I just wish I had been told a few things sooner to make better decisions so I am trying to share what we dealt with. Best of luck with your family. I know how hard it is on everyone. God bless.

Charlean

[chalaan]

Thank you Charlean. I have read all that you wrote and I will read it again. I am sorry for what you and your husband went through.

My brother's surgery was delayed about 10 days (while my brother was in the hospital) and so far he really has not gotten much back. He can breathe on his own and thank goodness for that.

They are willing to do chemotherapy and as of right now, we are considering it. Your comments about the reduced lifespan due to paralysis alone gives me pause on the chemo. On the other hand, there is some hope that my brother could get into a wheelchair and your comments surely indicate how important that would be. I am taking your story very seriously and I thank you for taking the time.

Annette