Spinal Tumor - is there anyone with a similar experience

[Susie]

Hi this is what has happened to me in the last 4 months.

February   Back pain getting worse till not able to lay down or sleep.Visited a private physio 4 times as I thought I had hurt my back.
28 February    Shock type feeling down my back legs this happened a few times over the next couple of days.
2 March    Feet felt odd
3 March    Feet felt more odd. Saw GP  Stronger painkillers & anti-inflamatory tablets for pain.
5 March   Numbness spread up to knees
6 March   Saw GP again Admitted to hospital
7 March   Reduced sensation now up to waist.
8 March     MRI scan showed mass on spine at T7. Moved to neurosurgery.
9 March   Morning CT scan. Operation pm to remove tumor. Not all of it could be removed as surgeon  didn’t want to damage nerves. Tissue sent for tests.
10 March   Walked with physio. Still reduced sensation below waist numb around lower ribs. Did not have this before operation
17 March   Went home
19 March   Back to hospital for results. I have Non Hodgkin Lymphoma.

I never lost the ability to move my legs & feet so can walk,but not very far, with a stick but am very unsteady due to the lack of feeling in feet & legs. I do not go out of the house by myself because if I fell I would not be able to get up. I have not regained any more feeling since my operation. I am not incontinent but bowels & bladder are affected. I still have the numbness in my lower ribs & feel as if there is a tight band round my body in this area. I still have discomfort from the operation. I cannot sit for any length of time as my back & ribs ache & even laying down is not comfortable.
Does anyone have any idea if any of this will improve?
I know I have more mobility than lots of people,but I feel so weak & helpless. I still find it difficult to believe what has happened to me. I try to be positive but it is difficult.

Susie.

[chrisarnold]

Hi Susie,

I guess advice is something that the forum members are not able to give; this is more the consultant's role. When you see him/her again, ask about the feasibility of massage, and gentle exercise. Meditation may help, possibly not for the original medical condition, but in "dealing with it".

All best wishes,

Chris

[Susie]

Hi Chris,

Thanks for getting in touch.

I think I am dealing with the NH Lymphoma quite well, all the medical staff at the cancer hospital are very positive about my treatment which makes me feel positive about the outcome. The side effects of the chemotherapy are another matter (basically feeling bad for 2weeks then 1 week a bit better before starting again) but there will be an end to it so I keep that in mind.

I know I'm lucky to have some mobility, but I am finding hard to deal with the loss of independence, frustration with not being able to do things just the loss of my previous life I suppose.

I see that you were into yoga, I used to go to yoga classes twice a week, I have been trying to do calming breathing recently, meditation is eluding me at the moment.

Susie.
 

[Andy]

hi susie

welcome to the forum

sorry to hear of your situation and wish you strength dealing with it. your neurologist should be able to provide you with most answers you need.

As far as the loss of movement, sensation and continence issues you are experiencing these are associated with the compromise to your spinal cord function.  In my experience of these types of spinal cord damage the outcomes can be very varied.  The tuour may have caused some permenant damage to your spinal cord and the surgery to remove most of it may well have put the spinal cord into 'shock' which could result in more loss and worsening effects which may well return/improve with time.

its really a case of time for swelling/ shockto reduce and doing as much as the doctors recommend or you feel up to to try and assist movement and function to return

hope this helps you

Andy

[Susie]

Hi Andy,

Thanks for the reply. I've not seen the neurosurgeon since being discharged after my operation, I am due to see him at the end of July. I think I will have a number of questions for him.

I have had some good news regarding my lymphoma. I had a CT scan and it shows no sign of the tumor on my spine and my lymph-nodes look normal. This means I only have to have 2 more sessions of chemotherapy, HURRAY!!! I do have to have some other treatment, after the chemo, which treats the spinal fluid and following that some radiotherapy. I think I will cope with these better as they should not make me feel as ill as the chemo.
You probably are not interested in that information but I feel the need to tell everyone my good news.

Regards
Susie

[chrisarnold]

Susie,

I know what you mean by the frustration. Never mind not being able to run the marathon, it's little things, like not being able to a light bulb, and re-learning kitchen skills that are the big pains. As for the yoga, yes, deep breathing or pranayama helps psychologically and mentally. Not sure about the direct effects on spinal injury, but general health and the immune system will improve.
You might find this a helpful reference:

http://matthewsanford.com/

Best wishes

Chris

[missy elliott]

Hi Susie,

No, this isn't my situation.  I developed an incomplete spinal cord injury in '93 when I was 26.  I have a lot of experience with a hospital in St. Louis called Barnes-Jewish.  They are affilliated with Washington University in St. Louis.  Maybe you should get on the net and look for doctors dealing with spinal tumors.  It would be nice if neuroligical problems were "cut and dry", but they sure aren't!

                                                                                                              Best of luck!!!!!!!


                                                                                                              Missy   

[LW]

Hi Susie. I was diagnosed with a T4/6 spinal cord tumour in November 2008 after 6 months of severe walking difficulties. Following surgery I was left in a very similar state to you and couldn't make head nor tail of it. I could physically move my legs very well but could not actually feel them. I had a very high degree of altered sensation throughout most of my body. Like you, I couldn't go out because I had no sense of balance and couldn't feel my feet on the ground. I had bowel/bladder issues which have only recently began to resolve, although I wasn't incontinent. Nobody understood and it's such a lonely condition.

I had my surgery 19 months ago and, although things have significantly improved, I am still nowhere near back to normal. Having said that, I am able to do so much more than I thought I ever would. I was unable to wash for 3 months and housebound for a year. Only a couple of days ago I took a bus and a train and went into town by myself, and I honestly believe there are more improvements to come. I felt compelled to reply to your message because I wanted to offer some support for such a rare and complicated condition.

I've found www.spinalcordtumour.org.uk to be a really good source of information; it really is one of a kind and I wish I'd discovered it sooner. I really wish you all the best - you still have a long way to go and there is still a lot of time for nerve damage to heal.

[Susie]

Hi Chris, Andy, Missy & LW,

Good to hear from you all.
I've not looked here for a while as the chemo has made me feel pretty bad recently. Besides making me feel generally ill one of the drugs that they have been using has a detrimental effect on the nerves (just what you need when you've already got nerve damage) so my lack of sensation has been even worse. Now I have had the final chemo treatment I am feeling a little better. I still have to have 3 sessions of High Dose Methotrexate treatment to treat the spinal fluid. The chemo did not treat this as the blood brain barrier prevents a lot of drugs getting through to the spinal fluid. Following this I will have some radiotherapy.

I was hoping for some positive news when I went to see the neurosurgeon. But I suppose I  wasn't surprised when I was told that they do not know if the nerve damage is permanent or not. It seems as if it is a matter of time & I just have to wait & see what progress I will make. I don't think anyone expects me to make much progress till my treatment is finished as it takes such a toll on the body.

LW you seem to be making very good progress, I know it has been slow but it gives me hope of what can be achieved. My legs feel cold most of the time did yours?
My aim is to return to work but to be able to do this I will have to be able to drive (my lovely mini) as I live in a village & there is no practical public transport. 
My family & friends are very good & supportive but they cannot know how I feel as this has not happened to them. As you say it is a lonely condition so your support is very much appreciated.

Susie.

[LW]

Hi Susie. Sorry to hear you've not been too good with the chemo - at least there will be an end to it (although that's probably no good to you now). In answer to your question, my feet were freezing constantly but this has improved. I found that hot water bottles helped a lot of the sensation to return, as did laying in a hot bath when I could. I don't know if it's something to do with the heat stimulating circulation but it enabled me to walk better by having more feeling in my feet. Like you, I desperately want to return to work at some point but don't have a car, so I'll be back to relying on buses and trains. I often wish I'd learnt to drive before this happened as it would have enabled me to go out sooner. My e-mail address is lm.wardle@o2.co.uk if you ever want to drop me a line. Look after yourself.
PS: That 'tight band' sensation you mentioned in your first message affected me for about 8 months prior to my diagnosis. It started in the February, died off for a couple of months, then came back with avengeance. Apparently it's a symptom of nerve irritation. It affected the left side of my ribcage the most; that was the side my tumour was on. I haven't had it at all since surgery but I get occasional electric shocks whenever something touches me in the same place. Nerves are funny things.