So the results are in....I've skirted the inevitable again. Not sure how I'm doing it but I am! Waiting for yesterday's results was a little more nerve-wracking than usual. I guess this was probably due to the fact that it was my first MRI since my estimated "life expectancy". Since "D-Day" has came and went without any bad news, I've decided to wholeheartedly start pursuing things that will make things easier for me. First and foremost is trying to get my leg at least semi-functional so that I can walk for more than a block without the aggravating hip and back pain that has so far accompanied that task. Out of everything that has happened to me over the past 2+ years, I have to say that my leg has been the most discouraging and frustrating part of this journey. I'd love to be able to go for those long walks through the park or on the trails with my daughter again.
With that being said, my Neuro-Oncologist, along with my Orthotist have approved me to begin the process of testing the Bioness L300 system on my leg. In essence, what this system does is provide FES (Functional Electrical Stimulation) to my leg by means of sending low-level electrical impulses to the common peroneal nerve in the leg, stimulating the muscles to lift the foot at the appropriate time while walking. The only possible obstacle may be insurance coverage, but I'll tackle that $7000 issue next week!
The Doctors still also want to investigate the use of Botox in my leg also. The downfalls to that are that it only temporarily loosens the leg muscles to decrease the tone(stiffness) and it may cause my leg to become too weak to even walk as I do now. I guess the upside to that one is that again, it would only be temporary until it wears off. Lastly, I need to start physio soon to help loosen my leg up somewhat befere atrophy sets in. Its too difficult to do at home alone unfortunately so I'll either do it in London or hopefully here in Tillsonburg at a private clinic.
Thanks for all the previous positive comments :)
'Til next time....
Ed
Saturday, March 13, 2010
Tuesday, March 2, 2010
March 2/2010
Wow, its been almost 3 months since my last post. I guess I can only point the finger at "life events" that have prevented me from writing earlier. My last MRI was in late February but I do not get the results until March 12th at my follow-up appt. I think this is the longest time frame I've had to wait between the actual MRI and the results. I guess its a good thing I don't have any hair to pull out!!
Since my last post, I returned to St.Maarten for a week long holiday. My parents came with me this time. I'd go back there tomorrow if I could....I think cabin fever is setting in! We weren't home for more than 3 days from the trip when my mother received a call that her mom was not doing so good health-wise and that we should try to get there ASAP. Sooooooo, off we went, my mother and I to England via Amsterdam (it was the quickest at last minute notice) Unfortunately we missed her passing by just over 2 hours but at least we were there. Needless to say, it was rather a sullen 2 weeks spent in England and Nana, may you rest in peace now.
I'm still waiting to hear from the London Regional Cancer Clinic about therapy for my leg and the possibility of Botox injections to loosen the muscles in my leg. Its ONLY been 6 months since this was supposed to be set up but nothing has happened so I guess its time to become the squeaky wheel.
On the subject of my leg and walking etc, I went to Hamilton yesterday to see an Orthotist that has been working with me, trying out different A.F.O's etc (ankle-foot orthotics which really are just the first step in trying to correct the underlying problem) I've had no luck thus far but when I went in yesterday, we trialled an electronic device that has just recently became available in Canada. Without boring you with all the details, its called the BIONESS L300 and it straps to your leg and wirelessly sends electrical pulses to your muscles to move your affected leg. This is the first time in 2 years that I've actually thought that maybe, I'll be able to walk for more than a block without the pain that has been associated with it.
According to the Orthotist, I really need to begin a therapy regime to loosen the muscles in my leg before we can continue testing this device and I also need to see if my insurance will cover the $7000+ price tag for it. In the end, there may be a light at the end of the tunnel as far as my walking is concerned. Without sounding too cliche, ....don't take your health for granted, enjoy what you have in life...something as natural and basic as walking, can be swept out from under you just like that!!
I will update my blog after March 12th when I get the results of the MRI.
Sincerely,
Ed
Oh...one more thing. Did I tell you that I've proven the doctors wrong so far?? I've surpassed my "expected life" of 1.5 to 2 years back in January. (yay me)
Since my last post, I returned to St.Maarten for a week long holiday. My parents came with me this time. I'd go back there tomorrow if I could....I think cabin fever is setting in! We weren't home for more than 3 days from the trip when my mother received a call that her mom was not doing so good health-wise and that we should try to get there ASAP. Sooooooo, off we went, my mother and I to England via Amsterdam (it was the quickest at last minute notice) Unfortunately we missed her passing by just over 2 hours but at least we were there. Needless to say, it was rather a sullen 2 weeks spent in England and Nana, may you rest in peace now.
I'm still waiting to hear from the London Regional Cancer Clinic about therapy for my leg and the possibility of Botox injections to loosen the muscles in my leg. Its ONLY been 6 months since this was supposed to be set up but nothing has happened so I guess its time to become the squeaky wheel.
On the subject of my leg and walking etc, I went to Hamilton yesterday to see an Orthotist that has been working with me, trying out different A.F.O's etc (ankle-foot orthotics which really are just the first step in trying to correct the underlying problem) I've had no luck thus far but when I went in yesterday, we trialled an electronic device that has just recently became available in Canada. Without boring you with all the details, its called the BIONESS L300 and it straps to your leg and wirelessly sends electrical pulses to your muscles to move your affected leg. This is the first time in 2 years that I've actually thought that maybe, I'll be able to walk for more than a block without the pain that has been associated with it.
According to the Orthotist, I really need to begin a therapy regime to loosen the muscles in my leg before we can continue testing this device and I also need to see if my insurance will cover the $7000+ price tag for it. In the end, there may be a light at the end of the tunnel as far as my walking is concerned. Without sounding too cliche, ....don't take your health for granted, enjoy what you have in life...something as natural and basic as walking, can be swept out from under you just like that!!
I will update my blog after March 12th when I get the results of the MRI.
Sincerely,
Ed
Oh...one more thing. Did I tell you that I've proven the doctors wrong so far?? I've surpassed my "expected life" of 1.5 to 2 years back in January. (yay me)
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