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Toasty's Tumor

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Updates

June 8th - The rumors of my demise are false I tell you! I am still here and doing well. I've just been real lazy and neglectful in updating this page, but I'm here to (sorta) take care of that now.

First of all, I must again say thanks to all the thoughts and prayers that were made on my behalf. I know all the support I received helped me through probably the toughest time in my life. Unfortunately, it's not over. But, every day I see more positive results, and I know that soon I'll be just like my old self (minus some bone and tissue, of course). Since returning home from inpatient rehab at OSU, I've made a lot of progress with my mobility, despite the numb-like feeling that still persists in my lower extremities. I can walk without a cane for the most part now, though I tend to tire sooner than normal still. In fact, I've even driven my car and my dad said he "didn't notice a difference" in my reaction time or driving ability. Of course, then the car started acting up. First it wouldn't start after being parked for a half hour, then when it did start, it lost power on hard acceleration. So now it's in the shop. Just another example of the kind of luck I have.

However, I do seem to get more and more feeling back in my legs each day or so. I can feel differences in temperature, and even my skin is sensitive here and there. The feeling that is taking the longest to come back is around my muscles. So it's still hard to control some muscle groups, though physical therapy is helping with that, and my therapist is real pleased with my progress every day I go. I even hope to go back to work as soon as Monday, with my doctor's permission.

So that's all for now. One change you will notice is the updates from when I was in the hospital have been added to this page, so the whole story can be read here. I will soon add in more details about the hospital trip and rehab, but for now let's just say I'm glad that's all over with. :-)

The following updates (through May 19th) were made while I was in the hospital and rehab. They were made by my family and I, when I was finally able.
Chris wrote on May 27. 1999, 20:40:
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Well, since no one else has been doing this...

I'm going home on Saturday! I still have to go to physical therapy and regain alot of my feeling, but I can walk with a cane fairly well now, and I'll get even more practice tomorrow.

The therapists say I'm progressing well, and I just have to pay attention to not pushing myself too hard. I'll have outpatient therapy three times a week, and I'll be exercising to keep my joints from tightening up. Soon, I'll get a handicapped parking pass, which should be fun. I can't wait til I can do the driving myself though.

I just know I'll be glad to be home and within reach of my friends and even my work. ;-)

Next week I hope to be noticing more feeling from my legs, and when I do, I'll be sure to let you know. I'll also start updating the main page again, so you don't have to keep going to this link. I'll probably start with the experience of the operation, hospital, and rehab, so it should be fun to see what I can remember. Check back soon!
Chris (toasty) wrote on May 24. 1999, 20:52:
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Here I am. I'm feeling better today, and want to thank everyone so much for their thoughts and prayers. I know it all helped.

Now I just have to get through recovery, which may take longer that I would like. Imagine being shot full of novocaine from your feet to your abdomem (sp?) and you get the idea of how I feel. The next couple days should tell me how quickly this step will take and I'll be sure to relate that as best as I can.

I still feel sick from time to time, but the pain isn't as bad. I just need to start 'doing' some things on my own and I'll feel much better.

The building I'm in is the Dodds Hall rehab, apparently pretty good, at least according to their literature. I just want to get better enough to leave and come home.

Gotta go for now, Again, thanks for thinking of me. I really couldn't get through this without all your support. :)
Dave & Robin Raters wrote on May 24. 1999, 16:58:
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Chris was moved to a new room today.

We have been unable to speak to Chris today so someone will update this again later.

Please keep Chris in your thoughts and prayers daily.

We know that the power of prayer can accomplish great things and Chris certainly deserves great things.
Gene Raters wrote on May 23. 1999, 23:06:
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On Saturday, Chris made it up and started walking with the aid of a walker. However, he did have a lot of pain in his back. He was given some pain medicine which then made him nausea. He was given some medicine for that which pretty much knocked him out for the rest of the day.

Sunday was a down day for Chris. He was in pain and nausea all day. He did nothing much but sleep all day. He did not eat any solid food. His bothers Dave and Doug visited him on Sunday afternoon. But Chris sleep most of the time. Let hope and pray Monday Chris will be back on the right track to recovery.
Gene Raters wrote on May 22. 1999, 09:32:
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Today is the Big Day for Chris. They will get him up to see how he walks. If he does O.K. he should be coming home in the next few days. He is doing fine. All his leg movements are strong and feeling are staring to return. He is eating well. He still has a little pain now and then in his back.
Gene Raters wrote on May 20. 1999, 23:51:
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@0 May 99

Chris was moved to a regular room this morning. He is in Rm 1124 in Rhoades Hall at OSU Hospital. He is recovering nicely. He is eating solid foods and moving his legs with strength and control. He has to stay on his bach until Satruday. Then, they will see how he can walk. If he has no trouble, he will probably being coming home Sunday or MOnday.
Dave Raters wrote on May 19. 1999, 21:26:
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The big day is here..... Fortunately Chris got his wish and was able to see Star Wars early this morning before heading tro the hospital.
Following is a schedule of todays events:
**** Special Note - WE SHOULD HAVE USED VALET PARKING

7:30 a.m. Took Chris to the OR
9:28 a.m. Doctor approaches another person....Chris's surgery not started yet. Where is Chris????
10:10 a.m. Nurse calls - surgery has begun...Let the fun begin!!!
12:00 p.m. Toasty is stable, tumor has been located - starting to remove Toasty's Tumor.
2:10 p.m. Should be done in about 1 hour....The family is playing cards and having a "grand old time"
NOTE: THERE ARE NO TV's IN THE WAITING ROOM - maybe the hospital should come into this century before it is over.
3:15 p.m. Doctor came down to talk - everything went as well as it could have went.
Will be in ICU until sometime Thursday.

Things look real good. Not sure how the recovery will be, depends on the healing process.

The doctor said " This is truly a rare type of operation. There have been only 2 tumors of this type in the last 15 years. The last one was operated on only a month ago":

WOW!! Leave it to Chris to be one of a kind.

More updates will follow as received from home base.

Keep up your thoughts and prayers Toasty still has alot to go through.
Michael Raters wrote on May 19. 1999, 19:27:
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Well, Chris has made it through surgery just fine and everything went as planned. The doctor expects a full recovery. I got that information off of my answering machine so I don't have much detail.I'll update further progress tommorrow.


May 17th - As you can see, I've made a few changes to the main page. I've moved the Updates to the top and put them in reverse chronological order, and I've added a link to the "Live" Update page. When I go under the knife at 7:30am Wednesday, I want to be able to keep you up to date as to my condition. So I'm getting my family to update that page for me while I'm in the hospital (and won't have computer access). You'll want to check out that page beginning Wednesday and throughout the rest of the week.

I do have some rather good news (for me). Thanks to my friend, Tim, and my brothers, Dave and Doug, I'll be able to see Star Wars: The Phantom Menace at the 12:30am showing on May 19th, just 5 1/2 hours before I have to be in Columbus (an hour away) at the hospital.

May 10th - Well, obviously not much has happened recently, but I thought I should make some comments on what has happened and what will happen. First I want to say Thanks! to everyone that has wished me well over the past few weeks, some of whom I don't even know personally. I really appreciate all the thoughts and prayers and I know with all that going for me, I'll get through this difficult situation in no time.

The most recent thing to happen was I had a physical and blood screen, standard pre-surgery stuff. Good news is that I'm probably in the best shape I've been in over 5 years, due to my diligence in exercising and changing my eating habits since the beginning of the year. That should help me recover quicker, I hope. I haven't heard anything at all about my last MRI, so I'm assuming no news is good news in that case. My spirits are still in fairly good shape, though I get a spot of nervousness here and there. I'm trying to think more about the things I need and want to do after surgery and recovery, and not about the act itself. That seems to help.

One thing that I'll have going next week is a page that will feature 'almost-live' updates from my family about my condition during and after surgery. I will post the link to that page by Monday so everyone can be as informed as possible about how I'm doing. Only my those I've given access to the posting page will be able to update it, so you can be assured that information will be as accurate as possible. That's about it for now, only 8 1/2 days to go...

April 27th - I had my third overall MRI exam today. This one was for a more detailed scan on my cervical spine (my neck) to determine if I had any problems there. I did get to see the images afterwards this time as well. Unfortunately, I have no images for you, as they are being sent directly to my doctor at Ohio State. I didn't see anything like what you can see in the tumor images, but there was something long and thin in the cord that didn't look like it belonged there. It could be the syrinx that the doctor mentioned previously (which is just a fluid filled tube-like thing, that likely will go away when the tumor comes out), but I can't really judge that myself so I'll wait until I hear from my doctor about it. I'll let you know.

April 21st - My surgery is scheduled for May 19th in Columbus at Ohio State's University Hospital. So right now I'm just trying to prepare. I have another MRI scheduled this week for a more detailed scan of my neck. This is to make sure I don't have another tumor there. Let's hope I get some good luck with that result.

I have some pre-operative exams scheduled as well, physical, blood type, etc. I'm also trying to get in the best shape I can physically. I figure the better shape I'm in when I go in, the better I'll be able to recover (and quicker). I'm also moving a few things up in my work schedule. And I'm trying to get some post-body shop problems fixed on my car. (Y'know, that's a whole other story to tell. Maybe when I'm recovering I'll tell that one.) People have asked if I'm scared. Honestly I have to say that I'm not. I mean, I don't really have any control over the operation, and I don't have much of a choice to have it or not, if I want a chance of getting better. So why be scared. Of course I wonder and worry about the outcome, but I don't let it bother me too much. Every time I take a step, or use a flight of stairs, I'm reminded of how serious this can get, and how hard it is already to do those things that I used to take for granted.

Of course, you'll note that my surgery date corresponds to the opening date of Star Wars: The Phantom Menace. Now I won't be able to see the movie for at least a few weeks after my surgery, so nobody e-mail or tell me anything about it. Feel free to use my countdown timer to plan your prequel schedule though. :) More to come soon, I'll keep this updated as the situation changes. Feel free to do a little research on spinal cord tumors yourself, and if you find anything interesting, let me know!
For those of you I've never met in person, here I am! Click on the picture for a larger version, if you're interested of course. ;-)

toasty



  Friends,
Some of you may be wondering what this page is doing here. Well it's pretty simple. I, (Toasty to some, Chris to others) have been diagnosed with having a tumor. Not just any kind of tumor though, but a spinal cord tumor. Yes, you heard that right. Apparently, for whatever reason (my doctor calls it bad luck, which I seem to have truckloads of) a fairly large tumor has formed within my spinal cord.

So why does that fact warrant a web page? Well, for a couple reasons. First, this will enable me to keep you, my friends, better informed as to my condition, and I'll be able to share with you what I've learned about it, as well as some cool pictures I've taken of my MRI exams.

Second, as you'll find out, this condition is a fairly rare one, and since even I've had a little trouble finding good information about it, I thought I would put up what I've found out in hopes of educating those that may also have be suffering and not know it. Third and finally, I guess this is a form of release for me. I can get out all my sarcastic comments and bad jokes about this whole thing. Why joke about something so serious? Because I've always believed that if you can't laugh at life, even the worst parts of it, you'll never be happy. And since happiness is a goal of mine, however elusive it might be, I choose to laugh as much as possible.
 

How This All Began

My symptoms started innocently and pretty vaguely to begin with. In fact, I didn't think anything in particular was wrong, other than I was out of shape and needed to exercise more. Last spring ('98) I remember taking walks to get a little exercise. Every now and then I would sort of 'trip' over my own feet. My left foot exactly. Since it had been a while since I'd exercised I didn't think much of it. Plus I figured I was just trying to walk at a pace that was too fast for me at the time. Unfortunately, I stopped walking on a regular basis by the time summer came along, probably because I got busy with work and took a vacation, etc. In any case, I didn't recognize my innocent tripping or stubbing of my foot as a problem. Heck I never fell, and it happened maybe once every half mile, if that. Well, winter comes along, and I notice I was having more and more of a problem, increasingly half-tripping for no apparent reason. It concerned me a little, but I had many reasons to discount it, or blame it on something else. Heavier boots I wasn't used to wearing, lack of exercise, old age ;), etc.

So the New Year rolls around and I resolve to get in better shape. I started exercising regularly. I thought that would improve my leg strength and the problem would slowly correct itself. A month of working out proved me wrong. At that point it was just plain annoying. There was and has never been any pain whatsoever, but I felt the leg getting weaker, and no amount of exercise was reversing that trend. I made an appointment with my doctor. He did a basic exam on me and sent me for an EMG exam, which is where they hook electrodes up the to nerves that make your muscles work and send charges through to see if the nerve is working correctly. That checked out ok for the muscles in my leg, etc. The next thing I had tested was my head, with an MRI. My doctor was concerned that I might have the beginnings of MS (Multiple Sclerosis). That MRI came up negative, showing a perfectly healthy brain. And so now I can prove to everyone, I DO HAVE ONE! So for all you doubters out there - where's YOUR proof? ;)

Following that I was referred to a neurologist. His exam showed me symptoms that I didn't even know I had. For example, by comparing the temperature of a cold metal tool between the lower half of my body and the upper half, I could tell the sensation in the lower half was 'duller' than my upper body. The cold object felt much colder to me when placed at chest level, than when placed at abdominal level. That was also something I had somewhat noticed, but never thought was a problem at all. He then sent me for a second MRI, to cover the spine. And that's the one that mattered. This MRI clearly showed some kind of growth in the spinal cord that caused the cord to swell. The reason for the leg weakness was the lack of spinal fluid flowing to my lower spinal cord. The tumor caused a blockage, which essentially starves the nerve endings which control, among other things, my leg muscles.
 

The Call the Next Day and Everything Else

When I left the second MRI test, I was told the results would reach my doctor in a couple days, and that I couldn't see them immediately because the person who dealt with the film went to lunch. Now, when I had my brain scanned, I got to see the pictures right away, as they had them up on their computer screens. So I was a bit suspicious about their excuse. But since I was in a different MRI scanning unit (supposedly their scans were more detailed) I believed it. Now I'm not so sure. They could have been telling the truth, just not the whole truth. I think now that they saw what happened and didn't want to show me because then I'd have asked, "Hmmmm, what's that thing in my spine?" I can see why they would have done this, but it is still annoying.

Well, the next day I'm at work and I get a call from my neurologist's office wanting my to see him ASAP. That morning in fact. I agreed, but needless to say I was quite nervous, at least inwardly. After waiting at his office for a while, he finally told me the bad news. Even with all the suspicions, I was pretty much completely unprepared for what he told me. I tried to listen closely to each and every word he said so I wouldn't miss anything, but the fact that I had something INSIDE my spinal cord really threw me. Of course, then he mentioned words like 'surgery' and started talking about doctors in other cities, etc. Being in a slight daze, I just tried to take in all in so I could go over it later, when my mind stopped reeling.

His office eventually (the next day) made an appointment for me with a neurosurgeon in Columbus at OSU. I had a weekend to think about all this and spent much of that time doing a lot of research on the web, trying to find more information about my condition.		  
 

The Neurosurgeon

As my research and friends suggested, I prepared a list of things I wanted to have answered by the neurosurgeon who would be operating on me. First he came in and did a quick neurological exam on me, testing certain reflexes and the strength in my legs and arms. He then took a look at my MRI films, and set about explaining in quite a bit of detail what the tumor was, what needed to be done, and how. He was very nice about answering questions and anticipated many of them. First he said I did have a tumor, and it was within my spinal cord. He said it appeared to be benign in nature, but that couldn't be confirmed until they saw it firsthand. It was probably a ependymoma, which is the most common kind and is mostly benign. It could also be an astrocytoma, which has a greater chance of being malignant. Besides that, the big difference in the type of tumor it that and ependymoma is relatively easy to remove, and get the whole thing at once, without the need for radiation therapy. However, and astrocytoma is much more difficult to remove completely, and almost impossible to tell if it is. Radiation therapy would almost have to be used after surgery to try to remove the rest of an astrocytoma.

The doctor said that my only real choice was surgery. Without surgery, he said, chances are that I would become paralyzed within a year. Even though I understood what had to be done in the first place, that statement kind of shocked me. He went on to say that with surgery, I had a good chance of getting back to normal, and regaining strength, but that he would also be happy if I got through it and stayed the same. (Personally, I think that would suck, but it's better than paralysis!) He then went on to say basic things about surgery, such as the basic risks, death being at the top of the list. So I'll have a 1 in 10,000 chance of dying during the operation. I just wish I could get those kind of odds in the lottery. ;) There's also the infection risks, and hemorrhaging. After surgery, I'll have to lay in bed for three days minimum to avoid putting undue pressure on the spinal cord. No sitting up at all. If everything went well, I would be able to walk out of the hospital, and whether or not I'd need physical therapy depends on how I feel after that.

He did say that in almost all past surgeries like this, the patient invariably feels an irritating burning-like pain from time to time for the rest of their lives. So just like my car (which I just got back from the body shop after an accident) I will never be the same. That was another ominous sounding phrase he used that made my eyes get a little wider. :) He then detailed the operation. Basically they'll cut a piece of bone out of my back, about a 2-3 inch rectangular section that I will never have again, which will give them access to the cord which they then cut lengthwise to open. From there they'll decide what the best tool to use to remove the tumor is (he prefers a sonic vibrating device that sucks the tumor out, but laser is another option). During all this they'll be monitoring the nerve impulses using SSEP (Somatosensory Evoked Potentials) to make sure that nothing is done that would affect me adversely. The surgery itself can last from 4 to 20 hours (I'm scheduled for 6). Probably the best thing he said is that the success rate of other similar procedures has been good. Since the only type of surgery he performs deals with the spinal column, he has a lot of experience in this type of surgery.

So why do I have this problem? His answer: "Bad luck." Well of course! I should have thought of that! ;) If you know me well enough at all, you know that if it wasn't for bad luck, I wouldn't have any luck at all. And lately I've been doing a lot to prove that. So if everything goes right, after I'm home from the hospital, I'm still going to be out of it for up to a month. I won't be able to bend, lift, stoop, or do any exercise (other than walking) for up to 3 months. I won't be able to work for up to a month as well. Of course, all that depends on how I feel. Personally, I want to be up and around as soon as possible. I guess I'll need to figure out how to get some good luck to do that!
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