18 replies to this topic

[bekaanardi]

On 3/19/09 I gave birth to my son, and was left paralyzed. The next day doctors found a tumor in in my spine and did a laminectomy to remove it. I am interested in talkng with people who have had similar injuries. It seems most people had some sort of accident, but I am wondering if there is anyone on here who had a tumor that caused their paralysis?? I am learning how to live in a wheelchair and with a newborn all at once, and it can be quite overwhelming.

Thanks.

[yecaliam]

 bekaanardi, on May 31 2009, 07:23 PM, said:

On 3/19/09 I gave birth to my son, and was left paralyzed. The next day doctors found a tumor in in my spine and did a laminectomy to remove it. I am interested in talkng with people who have had similar injuries. It seems most people had some sort of accident, but I am wondering if there is anyone on here who had a tumor that caused their paralysis?? I am learning how to live in a wheelchair and with a newborn all at once, and it can be quite overwhelming.

Thanks.

In January 2009...my 2 1/2 year old grandson starting tripping, falling then resorted to crawling within one month. After taking him to the doctor and an MRI he was diagnosed with a Pilocytic Astrocytoma in his spinal cord. Within a week he was at Stanford in California having surgery to remove the tumor...T2 to T11, they did a laminectomy. He came thru the surgery with flying colors and was released from the hospital in two weeks. Essentially we brought home a toddler in an infants body...he had no movement below the waist. The neurosurgeon prescribed physical therapy 3 times a week for a couple months...we live in Vegas...and have had a hard time finding a decent pediatric physical therapist. My grandson now at 4 months after surgery can crawl, pull up and take tiny steps with assist. He has spasticity quite badly in both legs...the right leg being worse than the left. He now has a wheelchair and a stander and gait trainer. He has mastered use of the wheelchair, but has low tolerance for the stander and gait trainer...he is a toddler being a toddler... Now the physical therapist insurance limit has been met...now paying out of pocket for therapy...it is costing a fortune. We have tried to get the insurance company to allow him to go to a rehab facility but they are denying paying for it.

I spend at least six hours a day with my grandson...I see what he is going thru and what I go thru to deal with this situation...it is very hard physically and mentally. I see him struggling constantly to move... I am always working with him to move this way or that way. We think he has some feeling in his left leg, but none in the right leg. He has to have a suppository daily for bowel movements.

This situation has changed my whole families lives...turned it literally upside down...I live, eat and breathe his condition...I am obsessed with it...it consumes me. Our faith in God is getting us through this though...

So thought you might want to know that there is someone else going through this as well...

[Katherine]

 bekaanardi, on May 31 2009, 10:23 PM, said:

On 3/19/09 I gave birth to my son, and was left paralyzed. The next day doctors found a tumor in in my spine and did a laminectomy to remove it. I am interested in talkng with people who have had similar injuries. It seems most people had some sort of accident, but I am wondering if there is anyone on here who had a tumor that caused their paralysis?? I am learning how to live in a wheelchair and with a newborn all at once, and it can be quite overwhelming.

Thanks.

I am 46 yrs old and had a lamectomy and tumor removed in 2003. My tumor was from T8 extending down to T12. I also have spondylosis and stenosis in my spine. I had a cervical fusion of C5 and C6 in 2005. I am experiencing pain and I am back into a wheel chair. I had fought to walk, and even run after tumor removal but have made slow deterioration from the degenerative disc disease. I have refused further surgeries and my dr. is giving me pain medications to try and control my pain levels.

[Kreez]

You are not alone in the tumor department. About 5 1/2 years ago I grew a tumor in the C-5 to C6. There was a sarcoma so I had radiation in Boston. Before the radiation I did have two surgeries done to remove the tumor. I was still able to walk for about 3 1/2 years after the surgery. But then things got difficult. Just over two years ago I began to lose the ability to walk. Also my arms weakened. Last year in the fall they discovered a tumor which was a sarcoma on the outside of my left lung. They removed it. It was about the size of a deflated basketball. Now unfortunately the tumor in my neck may be back. I still have some feeling in my body, but I can no longer move anything below my neck. As far as becoming paralyzed goes, getting a tumor is the worst because we can't get any settlement money. If you want any further information just shoot me a message.

[chairman]

Hi, i started to limp when i was 18. I had an MRI and a tumor/cyst was found in the base of my spine. I was born spinabifida and the tumor was growing in the area where i was operated on for the spinabifida. The tumor was removed and left me with a quite bad limp due to the nerve damage. They could not remove all the tumor and 10 years later it had grown again and so had to have it removed. This time i was left in a wheelchair, i can not control my right leg, have weekness in my left and bladder problems. Im now 39 and after a recent MRI, have discovered the tumor has grown again. I will leave it this time until it causes me pain or discomfort.
Kreez is right about not getting any settlement/compensation money.

Edited by chairman, 04 June 2009 - 12:59 PM.

[Trinity]

 Kreez, on Jun 3 2009, 05:10 AM, said:

As far as becoming paralyzed goes, getting a tumor is the worst because we can't get any settlement money. If you want any further information just shoot me a message.

 chairman, on Jun 4 2009, 01:56 PM, said:

Kreez is right about not getting any settlement/compensation money.

Although I don't doubt having a tumor on your spine is a pretty big deal don't assume it's worse because of money! Plenty of people who suffered traumatic sci's do not get any settlement money. It's not a case of "my sci is worse than yours because.."

[StillFingers]

 trinity, on Jun 4 2009, 09:15 AM, said:

 Kreez, on Jun 3 2009, 05:10 AM, said:

As far as becoming paralyzed goes, getting a tumor is the worst because we can't get any settlement money. If you want any further information just shoot me a message.

 chairman, on Jun 4 2009, 01:56 PM, said:

Kreez is right about not getting any settlement/compensation money.

Although I don't doubt having a tumor on your spine is a pretty big deal don't assume it's worse because of money! Plenty of people who suffered traumatic sci's do not get any settlement money. It's not a case of "my sci is worse than yours because.."

Thank you Trinity.

My SCI is worse than yours because I did not get any money...pleez. I guess your tumor and resulting SCI is worse than a child who was playing around the backyard, slipped and broke their neck...

Look around, you are alive, be thankful you live in an age and country where survival is an option. And, how about taking the divisiveness out of your language. All SCI's are horrible, they change our lives and those around us forever, support each other, not divide.

Jerry

[chairman]

Quote

Quote

Although I don't doubt having a tumor on your spine is a pretty big deal don't assume it's worse because of money! Plenty of people who suffered traumatic sci's do not get any settlement money. It's not a case of "my sci is worse than yours because.."

Thank you Trinity.

My SCI is worse than yours because I did not get any money...pleez. I guess your tumor and resulting SCI is worse than a child who was playing around the backyard, slipped and broke their neck...

Look around, you are alive, be thankful you live in an age and country where survival is an option. And, how about taking the divisiveness out of your language. All SCI's are horrible, they change our lives and those around us forever, support each other, not divide.

Jerry

Wind your neck in! (if possible )
Where have i said my SCI is worse than anybody else's?

[StillFingers]

My reply was to the notion that a tumor/sci that does not receive a settlement is somehow worse than someone that does...did I miss something and given that you chose to not show my original reply in its totality...your reply is misleading at best...I'll interpret your reply as meaning not getting a settlement sucks, but that Kreez' statement that a tumor/sci is worse than other SCI's, you do not agree with.

Edited by StillFingers, 04 June 2009 - 05:57 PM.

[Kreez]

I didn't really mean to imply one was worse than the other, but I guess I did after rereading my post. All I'm saying is that it sucks because I'm broke. Didn't mean to offend anyone. My bad.

[StillFingers]

Kreez, I was sure that was what you meant to say. I know how tough it is. I was 21 when I broke my neck, was a partner in a landscape design and implementation company. I lost it all, did not have enough quarters to qualify for SSDI, had to sell everything to pay for my medical bills, even had to get my parents to care for me in there home. It sucks big time. Given time and support I made it out.

My best to you Kreez,

Jerry

[sherbs]

 bekaanardi, on Jun 1 2009, 03:23 AM, said:

On 3/19/09 I gave birth to my son, and was left paralyzed. The next day doctors found a tumor in in my spine and did a laminectomy to remove it. I am interested in talkng with people who have had similar injuries. It seems most people had some sort of accident, but I am wondering if there is anyone on here who had a tumor that caused their paralysis?? I am learning how to live in a wheelchair and with a newborn all at once, and it can be quite overwhelming.

Thanks.

Hi

I also have a spinal cord tumor (ganliaglioma) Had a 10 hour op to remove it 16 yrs ago, unfortunately only a small portion could be removed. Was left with limp in left leg, I use a stick to walk. I still work and drive, so consider myself fortunate. Things are getting much harder now as the years roll on, taking a toll on my right leg and back. i have much pain, but just want to keep on going and living and working etc.

Any questions you have just ask

Take care
Shirley

[jane]

i had a heamangioma in my spinal cord at c4/5 and part of it was removed which resulted in my sci. the heamangioma is still there, and my symptoms are worsening, so we have to wait and see what happens.

i agree though, finding people who have had the same thing as me is difficult

jane

[spot]

 jane, on Aug 6 2009, 09:23 AM, said:

i had a heamangioma in my spinal cord at c4/5 and part of it was removed which resulted in my sci. the heamangioma is still there, and my symptoms are worsening, so we have to wait and see what happens.

i agree though, finding people who have had the same thing as me is difficult

jane

There are a couple of us around, I am sure. I had a heamangioma at c1/c2. I think they got it all, but my body is sure messed up! Having only had the surgery in June 2009, things are still progressing. Nothing seems favorable, yet, but who knows the future.

spot

[Tetracyclone]

Spot,
It would be great if you could fill out your profile and let us know how things are going.

[spot]

 Pwuff, on Jan 3 2010, 01:12 PM, said:

Spot,
It would be great if you could fill out your profile and let us know how things are going.

I am new to this sort of thing. How do I fill out "my" profile? Where does it live?

[Soryfam]

Click on the "My Controls" link at the top of the page. It will take you to all things administrative.

Sandy

[Darkghost]

 bekaanardi, on Jun 1 2009, 02:23 AM, said:

On 3/19/09 I gave birth to my son, and was left paralyzed. The next day doctors found a tumor in in my spine and did a laminectomy to remove it. I am interested in talkng with people who have had similar injuries. It seems most people had some sort of accident, but I am wondering if there is anyone on here who had a tumor that caused their paralysis?? I am learning how to live in a wheelchair and with a newborn all at once, and it can be quite overwhelming.

Thanks.

Hi,
I was born with spina bifida although after surgery at birth showed no signs until I was 21 and training to be a psychiatric nurse when I developed a weakness in my left leg after a visit to hospital i was found to have a cyst next to my spinal cord .Full recover that time but 13 yrs later needed further surgery I have 2 other ops over the past 14 yrs the last one leaving me in a wheelchair.I am very lucky I have 2 children a boy and a girl aged 20 and 16.I am 48 yrs old and continue to work full time my injury was l3-4.I'm not sure what life has in store but then again who does?.
I wish you well for the future ....i work on the principle that a mountain of problems is best delt with one rock at a time...seems to work for me.
Best wishes George

[spot]

 Soryfam, on Jan 5 2010, 09:52 AM, said:

Click on the "My Controls" link at the top of the page. It will take you to all things administrative.

Sandy

Found it, thanks. I ended up putting a lot of stuff in there about me and my injury. I hope that wasn't wrong. I guess it is o.k. No one has to read it!