Therapy and recovery from post surgery deficits

[Tmasgio]

John,
Thanks and also look at the people page or the spotlight stories. You will see Van Johnston. He is running marathons after his surgery. The road to recovery is challenging but the rewards are different as well as the gains. You will be a success and in time you can tell everyone your experiences.

Tony

[john8888]

Tony

Thank you for the link to Van Johnston

What an iron man!

It is amazing that after surgery, he spent 3 weeks in the hospital and 6 Weeks post-op he went for a run. And in 6 months he ran a 10K in 38 minutes.

You have transformed my thinking from “I wonder if anyone has ever recovered enough to run?” to “It is possible”

Regards
John

[Matthew Sweeney]

John:

Just wanted to clarify part of my message by sharing something i wrote on a previuos post. Recovery depends on multiple factors the greatest of which is what the surgeon did to get the tumor out. Excercise and Pt are factors as well but some damage is irreversible. Here is a portion of an old post which I wrote almost a year ago. It explains this idea:

"This idea of changing, growing and adapting is a very important for me as I am fast approaching the 18 month mark. I certainly have made dramatic improvements but my goal was to get back to where I was pre-surgery. My recovery continues but clearly it has slowed. I am coming to the realization that I will have some permanent deficits. These deficits will preclude many of the activities that I so loved and it has been with a great deal of sadness that I coming to accept this. It would have been hard for me to work harder or been more disciplined about my recovery. I was diligent about getting treated by the best that western medicine had to offer. I found the most qualified opinions on alternative medicine including acupuncture, massage therapy, diet and supplements. I worked diligently at my PT and I don't thinks I have ever worked harder at my fitness regimen. I feel very good that I gave myself the very best opportunity at recovery.

I said this on a previous post. If someone cuts your spinal chord in two it doesn't matter how hard you work or what you do, you cannot overcome your brain's inability to have two way communications below the spinal chord damage.This idea also holds for much of the partial damage done by this type of surgery. I had read many accounts of people recovering to pre-surgery levels. My NS and other opinions confirmed that many of these cases are in the cervical area where there is more room for surgical maneuvering and/or the tumor was more accessible. My tumor was also in avery difficult position in the thoracic area and within the central canal and as such spinal chord tissue was damaged in order to get that deep within the chord. So at this point and in fairness to myself I need to readjust my goals.

I no longer will set complete recovery as my goal because this is not a realistic or fair goal to set. It would only result in continual disappointment. I can no longer wait until I am "recovered" to start up chasing my kids, biking, hiking, kayaking, skiing, golf and the many other activities to which I so desperately want to return. Even now the simple act of typing these words causes that familiar lump in my throat and the stinging in my eyes; familiar sensations these past several months coming to grips with this new reality.

So far from throwing in the towel, I have set new goals as this year begins to unfold. I will "adapt." I have begun to research recumbent cycles both upper body powered as well as traditional leg cycles. I can ride a stationary recumbent cycle but upon repeated dorsa-flexion in my foot I develop clonus which limits my ability to continue my pedal stroke. Even if I have to get both I am detrmined to find an outdoor activity where I can feel the wind on my face and see beyond the limits of my health club.

I have begun to look into adaptive ski programs and will tackle that next winter as my PT and I will work now on getting my body ready for this challenge. I am also looking at rowing as both ocean rowing and sculling are activities that can be readily adapted to my condition and well suited to Seattle's ready access to both fresh and salt water bodies.

So, I will continue to grieve my loss as I truly loved those activities; but accepting the loss is made easier by focusing not on what can't be done but on what can. I know I can still do much and am thankful for that. I know many of you have given up far more than I, so forgive me if I sound self indulgent. Carol you are my inspiration for this. You more than most have struggled, persevered and overcome. I want to be like you!

So I have new goals, new motivations, new challenges and it is nice to have reality play a factor in all of it. I think my new goals are achievable and they set up their own rewards. I hope to ride in the sun (when and if it returns here in Seattle). I hope to get back up in the mountains and watch my children (as they blow by me on their way down the slopes). I have returned to coaching basketball and found joy again in it. I want to get back out on the water in some manner. Many things to work for and look forward to in 2007 and that is the best motivation to get and maintain health."

[john8888]

Matt

Thank you for your post. It is a real insight.

I stared this post wondering if there was any hope out there for a sports and fitness centred life based on just pushing through the pain of therapy.

I now see a path forward.

One line you use in your post above will be my motto

“I can no longer wait until I am "recovered" to start up chasing my kids, biking, hiking, kayaking, skiing, golf and the many other activities to which I so desperately want to return”

It is so perfect and so true. I just needed someone to point it out to me.

Thanks again

John

[Tmasgio]

All in all we have to do whatever we can today and strive for what we can possibly do tomorrow. Explore every avenue. Ask for suggestions and opinions from others. We cannot stop but in going forward mark achievements as gains and celebrate those gains. Going back is not an option but always looking forward is an option.

[quark07]

Hi,

I have not been on the site for some time.

I read your question and want to say that the therapy was worth it and so is all the time you put in at the gym. I believe that the level of recovery really comes over a long period of time, it does not happen within a year. It is so hard but as the years go by you realize how much you have gained and that all the hard work was worth it. The other alternative is to sit or lay around and slowly get weaker and weaker.

My surgery was 17 years ago and thank God I got therapy and pushed myself to walk and excersise, I would hate to see what my life would be like now if I had not done so. I know I am not like I could have been if I had never had this tumor but I did and I feel I did the best I could to recover and have a normal life.

[john8888]

My mind was in 2 directions when I first posted the topic.

On the one hand I know that “exercise” always makes you stronger and better off in body and mind. That is true for all the population including people recovering from spinal tumours.

I was wondering if the eventual level of deficit recover was helped by the amount of therapy.

To ask the question in a different way, assume there are 2 equal groups of spinal tumour post operation patients and group A had therapy 7 days a week for a year and group B had therapy 1 times a week of a year.

What would be the difference between the 2 groups after the end of year 1?

I was sure that group A would be fitter and stronger then group B.

But I did not have a feeling if the level of deficits would be different between the groups after the first year.



The posts above have changed the basic way I now think about my situation.

“Always looking forward”

“It does not happen within a year”

“Strive for what we can possibly do tomorrow”

“You need to hammer the neural pathways and continually challenge them to the extent possible”

“I can no longer wait until I am "recovered" to start up chasing my kids, biking, hiking, kayaking, skiing, golf and the many other activities to which I so desperately want to return”



Thank you to all who posted here and changed my way of thinking.

Regards
John

[wobbly1]

Hello John,

I had an Ependy C5-C7 resected March 2004, and I am still in training. I am a 40 year old martial arts enthusiast- and I am still working my way back up there. Sometimes I blame my age as well as that stinkin' tumor, but I think that just walking away from this is amazing, and everything else is icing on the cake.
Do you recognize the amount of muscle memory you have? An example : 6 months post op I went roller skating with my daughter, with a numb leg and a numb bum. Even though I had no sensation, my body knew exactly what to do.
These days I ride a recumbent bike. They are geeky, I know, but it sure is fun and they are more comfortable for me.
I still train Kung Fu 3 nights a week, and Tai Chi daily ( this was a life saver ) and those who do not know that I am numb have no idea I was ever sick.
Hang in there, be grateful for where you are at, and DON'T STOP PUSHING. The only thing you had to fear is behind you-

In Love and Solidarity

David Portland, OR

[john8888]

David

That is amazing. Training Kung Fu requires balance and power and grace.

I had no ideal that there were people out there still running, bicycling and even training in martial arts after this type of surgery. I thought the numb bum and dead leg meant “no way.”

I like you point of muscle memory.

I will need to test that muscle memory theory of yours.

In February 2007 (pre surgery, pre knowledge of my own stinking' tumour) I was skiing the black diamond back bowls at Whistler BC for 2 weeks non stop. Perhaps another month in the gym and then a first run down a green bunny run for late spring skiing this year?

Thanks for the post. If anyone had asked me if Kung Fu was possible after this train wreck of a surgery I would have guessed “no way”.

Ps – I think I will steal the name wobbly 2 (It makes the point so well)

Regards
John

[Tmasgio]

John,
One more thought. Just keep training for the things you used to do and if you cant do those activities then you cant. I cant play softball anymore so I joined a bowling team. I have satisfy my competitive appetite.


Be Safe,
Tony