Blog documents my recovery from SCT, in detail

[Bill Anschell]

I just wanted to let folks know (especially those who are about to have or just had surgery to remove an intramedullary tumor) that I have created a blog describing my recovery in extensive detail. The main post covers pre-surgery and a three-month follow-up, and in the "comments" section I describe my condition in detail at follow-up periods of six months, a year, and (my current status) somewhat over two years.

It starts out similar to my story on the People page of this site, but adds several chapters. I'm not selling or promoting anything - I just posted it to help others sort through the experience. I recommend the SCT site many times throughout my various posts.

The blog is at spinalependymoma.blogspot.com/

--Bill

[Tmasgio]

Bill,
Thank you for sharing your road to recovery. I hope your pain subsides or you find the right mix of medication.

Tony

[Ali-Brad]

Lots to read ( :)which is fantastic . I'll start reading tomorrow with an endless pot of coffee.

Alison

[paul55]

Bill, nice reading your blog. Amazing how my situation was very similar to yours and for different reasons. I would guess many of us experienced the same as you in many areas.

Two years out, very interesting what you are left with. You have made great strides with it though. I can only think that over more time, who knows, maybe more healing will take place. We can only hope. Do you still feel the fatigue in your legs? And people don't quite understand what I am talking about. I do and it is very depressing at times.

Paul

[billanschell]

Paul:

The fatigue in my legs hasn't changed at all. The only improvement I saw was when I first started taking Xanax, which seemed to enable me to stand longer, but then things gradually settled back where they'd been. My guess is that if I were to up my dosage I'd probably see some improvement again, but I don't really want to start chasing the dosage up - I think my body would continue getting accustomed to it and its effect would be short-lived. Plus, Xanax itself zaps some energy from me.

--Bill

[qhcrazy]

All I can say is, "wow"! So similar to my case, it's scary. I read your entire blog and hung onto every word! I guess I'm still in the optimistic phase, and hope to gain more sensation. I'm not messed up motorally, just sensorally. I have to turn slowly, so as not to appear "drunken", just as you described. My torso is somewhat numb, dull to the touch and feels so TIGHT. I have continual muscle spasms in my left thigh. My legs and feet constantly tingle and feel prickly. I can walk, and to most people, they probably notice just a little bit of "offness" in my gait. But like you said, people don't know the uncomfortableness of all of it. I am taking no pain meds, due to the blood thinner med. I'm on since I developed major clots after surgery. Your blog was so interesting and I'm so thankful that my surgeon here in Augusta, GA knew about the motor measuring device that would be present during surgery. Thanks for letting us know how you are doing, maybe I shouldn't be quite so hopeful, but I probably will just because that's the only thing, besides my family, that will keep me going. God bless you and your CONTINUED recovery.

[Ali-Brad]

Hi Bill, I've just read your entire blog with all the follow ups and it was so interesting. I could relate to all of it. My first op which included a C1-C3 laminecomy caused me to have forward curvature of the neck, so I ended up with a C1-C5 fusion in my 2nd op some 4.5 months later. My 1st op was 8 hrs and the 2nd op 10 hrs. Big stuff. Still leaving me with residual tumor, due to scar tissue present in the 2nd op and this leaves me wandering about my future. As I type this my neck, shoulder blades surrounding areas are burning and on fire. The pain is awful and yet everyone says, 'but you look so well'!! Pain is terrible and I'm over three years since my 2nd op and worse off in many ways since surgery. My head is completely fixed . It will not move in any direction. I would just love 24 hrs of being able to turn my head. It would be heaven !! We plod on.

Regards Alison