14 replies to this topic

[Cat27]

Hi all, new to here but my partner has been diagnosed with a astrocytoma spinal tumour, he is unable to stand and is in a wheelchair, has anyone on here ended up in a wheelchair from a tumour? If so how do you cope? We have a small child, Marc is now 26 and were finding it all very hard to cope with. He is awaiting chemo and radio at the moment, x

[Charlie-boi]

sorry to hear of this....i met a couple nice guys in hospital with or had that condition...i hope all the best for mark, and when all tumour is sorted it will allow you to look for more general questions about wheelchair life. im sure somebody has shared your situation and comment soon. once again best of luck.

[lavenderthistle]

In the incompletes forum, kansasmom's son has a spinal tumor. I'm not certain of the type. If you have not used the search function at the top right....(back up there^^^^^) type in tumor, spinal tumor, type of tumor...etc. I'm sure more stories will pop up. Aside from Kansasmom I know I've seen one or two others.

Here's a basic search to get you started...

http://www.apparelyz...__1#entry214402

I used the type you listed and searched "forums" I noted there are 4 pages that return a result for spinal cord tumor in a general forum search

Welcome to the forum

Edited by lavenderthistle, 29 December 2011 - 11:24 PM.

[greybeard]

Hi Cat, Welcome to the forum. I hope you find what you need to know. We have all sorts of spinal conditions here and many share similar problems, so just ask and you are bound to get several responses.

Edited by greybeard, 30 December 2011 - 12:32 AM.

[hannibal]

Cat27, on 29 December 2011 - 09:45 PM, said:

Hi all, new to here but my partner has been diagnosed with a astrocytoma spinal tumour, he is unable to stand and is in a wheelchair, has anyone on here ended up in a wheelchair from a tumour? If so how do you cope? We have a small child, Marc is now 26 and were finding it all very hard to cope with. He is awaiting chemo and radio at the moment, x

Hey in 2007 I had a astocytoma removed from my spine. While I did not have to go through chemo or radio, I have ended up in the chair as a result of the tumor. If you have questions for me let me know.

[Stand]

I have no experience in this but I just wanted to say I hope everything works out for your family. Please keep us updated. Good luck.

[wheeliebear75]

There are some such as hannibal & others, so hopefully they'll be along shortly. Most of us although unfamiliar with Cancer or tumors CAN be of a bit more help in the OTHER issues...which I hope you will ask questions whenever needed.

[Cat27]

Thankyou for all your posts, I was surprised by the response, most forums I have been on you get nothing back, so thankyou! Treatments starts next week for marc, we are struggling with getting his nerve pain under control do any of you suffer with this? Also how did you cope with the change of lifestyle? He finds everything takes ten times longer and his independence has gone alittle. Did any of you feel like that?

Hi Hannibal, do you mind sharing your story? How did you cope from walking to life in a wheelchair?

[keiranjump99]

i don't have any experience with spinal tumours but the effects are just like a spinal cord injury right? anyway i hope that treatments goes well for marc and that he is able to regain as much independence as he possibly can. welcome to the forum cat.

[hannibal]

Sure I don't mind, it hasn't been easy for me since I been up and down the past few years. It started for me when I had spinal fusion the Dr. went to straigten my spine with out knowing there was a tumor in it. This caused me to lose function of me legs. I had the tumor removed a year later and was able to walk a little bit after that. I then had another operation on my spine to have the syrinx drained. I again recovered from a little bit but had to use a wheel chair to go long distance. More recently I had spinal fusion the same operation that got messed up, and im in a wheelchair all the time except for therapy where I walk very little. They are unsure if I have any more tumors gotta have more tests done.

However I have discovered family and friends are very helpful, going out on a night to the bar or movie always seem to help. The worst part for me is sitting at home alone, that's where it gets kinda depressing. So I always try to keep my self busy. No matter what I have done days, and just trying to look at positively is the best thing to do. Just remember things could always be worse, that's how I look at it. If you have questions let me know, I would be happy to answer them.

[wheeliebear75]

Yes I do recall it feeling like I'd gone backwards by 10yrs (I was only 14 when I got hurt so those 10yrs was a BIG drop).

While I was in the hospital Children's had made it so that my youth pastor could use a conference room & so she'd bring all the kids who were 16+ (under 16 had to be accompanied BY PARENTS) with parents' permission note + proof of shots....we'd all get to do something "FUN" like movie & popcorn or pizza. I always looked forward to Wednesday, Friday & Sunday afternoon/evenings cuz I'd always have someone who wasn't sick or sporting the latest in hospital fashion. That 90min-3hr break 3x a week was a reprieve from my 7 days a week hell....because for those short visits we were just a bunch of teenagers doing what teenagers do; eating popcorn, watching movies, drinking soda, & eating pizza. If your son is going to be in the hospital for any length of time see if they won't allow you guys to do something like this.

The effort it takes....? Well...I'd like to say I found some magic trick...but...I don't want to "lie". I've more or less just grown accustom to the NEW way of how things are. If it is mid-winter & it's taking everything out of me to get my clothes gathered up & dressed but we need to be at my Dr.s apt. @ _:__....yeah I admit....I accept my B/F's or mom's help. On days where I'm still having to put out a lot of effort....so long as it isn't HURTING ME to do so....I just put up with & account for the 5x longer it takes ME to do it than someone else.

The pain aspects....you should probably get a BIG cup of coffee & start reading. There is a LOT of discussions on pain management. There are a # of Rx solutions, there is also T.E.N.S. unit which I & others find helpful. He may be a bit young for & therefor like most youngsters not quite ready to "FOCUS" the mind into meditation although that has also helped myself & others. Hopefully once they get the tumors to shrink then he won't be in so much pain.

Keep coming back; keep on asking questions, & keep on reading older threads/posts, & don't forget to keep taking care of YOURSELF!

[Cat27]

Hi Hannibal, was your surgeon dr jallo, he's seems to be the expert over in America, I have written to him for a second opinion, You have been through alot too, I hope your tests come back ok,

Wheelibear, thankyou for your response, it sounds like you do very well! How do you find going out and about? Can you drive or work? My partner can't do either, after treatment which is six months, he will then hopefully go onto have re hab,

[hannibal]

Actually my surgeon was Dr. Jallo, he was great, when they did my mri's the tumor never even showed up. He found it doing surgery, he is great, I would recommend him.

[sherbs]

Cat27, on 29 December 2011 - 09:45 PM, said:

Hi all, new to here but my partner has been diagnosed with a astrocytoma spinal tumour, he is unable to stand and is in a wheelchair, has anyone on here ended up in a wheelchair from a tumour? If so how do you cope? We have a small child, Marc is now 26 and were finding it all very hard to cope with. He is awaiting chemo and radio at the moment, x

Hi Cat27


i have a spinal cord tumor (Gangliaglioma), if you or marc would like any info or if i can be of any help whatsoever, please pm me

xx

[Cat27]

Hi sherbs,

Was your tumour able to be removed? Marc is starting radiothearpy and chemo on Friday to try and stop the tumour an control it, it's all so scary, in September 2011, he was diagnosed, he had a decompression surgery and biopsy as they were not able to remove, results came back as a low grade barely active tumour. We were feeling abit calmer about it all and marc went onto rehab, over the next eight weeks things got worse, he was losing more control in legs and was struggling to walk with delta frame, we were on and off phones to doctors, who put his steroids up and down saying they were hopefully for improvement, in the end we were on the phone everyday and by the time he was admitted he was wheelchair bound!! Trying to get the drs to act quickly was a nightmare, they just don't seem to work fast enough it makes me so mad. They did another MRI which showed the tumour had grown and filled the space the surgeon had made, they re operated and moved some bone to make more space and decompressed again! Another biopsy releaved a high grade astrocytoma. I can't understand how in ten weeks the diagnoses could be so different. It's so horrible watching him suffer, he is in constant pain, can not stand and has bladder and bowel problems. Before he had his operations he was on steroids and could walk unaided, I hate to see how he has detoriated, he gets upset about our little boy as he is unable to care for him, I am doing my best to keep him positive. any ideas what things may help? How are you doing from your tumour?