I've spent nearly three hours inside an MRI this afternoon, with my neck and head clamped into place, so that I couldn't move. It was the longest and most stressful session I think I've had yet. The claustrophobia really got to me toward the end.
Since then, I've had a Vicodin and am spending the rest of the evening in my new recliner...whittling down my Netflix queue. I was hoping to spend some quality time with my family, but this disease had other plans for me.
Quickly looking at the images, it appears that I may have a number of small lesions on my brain. I also have a shocking number of herniations throughout my spine. If there are lesions, it means that I have MS.
The thought of MS is quite a blow, but it will be good to finally have a name to associate with how I've been feeling. With a recent dose of steroids, I'm feeling better now than I have since August of last year. You can probably tell, since I've written more this week than I have all year.
My neurologist appointment has been moved up from June 28th to June 11. Hopefully, we'll have some news then.
Showing posts with label MRI. Show all posts
Showing posts with label MRI. Show all posts
Tuesday, May 28, 2013
Sunday, September 11, 2011
Update: Surgery Rescheduled - I'm Going Under Tomorrow
Messy. Confusing. Hectic. Such has been my life in the last 72 hours.
I was scheduled to have surgery on my spine next Monday, the 19th. It was supposed to be in West Phoenix, more than 90 minutes from where my wife is now working, and where my daughter is being taken care of during the day. The hospital is supposedly top of the line, but designed for same day surgeries. I was scheduled for a 5-7 day stay. The hospital was so far away, I was expecting no visitors, and the hospital had no internet access for patients!! In 2011?! FML. Needless to say, I was not looking forward to my stay.
I received a phone call on Thursday morning from my surgeon's office. He had a last minute cancellation for a surgery this Monday morning. Considering the recent complications I have been experiencing, and the major inconvenience the location of the other hospital would pose upon my family, he was offering me the first chance to take the place for the cancellation.
I was scheduled to have surgery on my spine next Monday, the 19th. It was supposed to be in West Phoenix, more than 90 minutes from where my wife is now working, and where my daughter is being taken care of during the day. The hospital is supposedly top of the line, but designed for same day surgeries. I was scheduled for a 5-7 day stay. The hospital was so far away, I was expecting no visitors, and the hospital had no internet access for patients!! In 2011?! FML. Needless to say, I was not looking forward to my stay.
I received a phone call on Thursday morning from my surgeon's office. He had a last minute cancellation for a surgery this Monday morning. Considering the recent complications I have been experiencing, and the major inconvenience the location of the other hospital would pose upon my family, he was offering me the first chance to take the place for the cancellation.
Saturday, September 3, 2011
Photos: My Spine Is Much Worse Than Imagined
Note: The images below are of my body. They are the property of myself and my respective doctors. They may not be reproduced without my consent. Thank you for understanding.
As you know, I had a discectomy on June 20th. I had a couple of minor complications, but things seemed successful.
Within the first two weeks, however, the pain came back with a vengeance. Pain medication quickly had no effect. I started receiving regular epidural injections. Every two weeks. At some appointments, two at a time. No effect.
With every passing day, my mobility worsened. I started collapsing like I had before. I'm at a point now where I cannot walk without a cane. My spinal surgeon scheduled another set of surgeries for later this month. He had me complete an MRI last week to get an idea of what we were looking at. I had a chance to take a look at them yesterday morning. What I saw was so much worse than what anyone could have imagined.
As you know, I had a discectomy on June 20th. I had a couple of minor complications, but things seemed successful.
Within the first two weeks, however, the pain came back with a vengeance. Pain medication quickly had no effect. I started receiving regular epidural injections. Every two weeks. At some appointments, two at a time. No effect.
With every passing day, my mobility worsened. I started collapsing like I had before. I'm at a point now where I cannot walk without a cane. My spinal surgeon scheduled another set of surgeries for later this month. He had me complete an MRI last week to get an idea of what we were looking at. I had a chance to take a look at them yesterday morning. What I saw was so much worse than what anyone could have imagined.
Sunday, August 28, 2011
Update On My Spinal Issues: Surgery, Long Recovery Ahead (Photos)
As many of you know, I had surgery on June 20th, to remove to the disc between my L5 and S1 vertebrae. After the procedure, I felt amazing. Sadly, the joy was short lived.
By June 30th, I had to have my first epidural to help ease the pain. The pain was so bad, they completed a series of MRIs to verify that I didn't a hematoma in my spine. I didn't. The epidural had no effect. I had two additional epidurals on July 14th, and again on August 4th. Again, no results.
I had a chance to see my surgeon last Friday, the 19th. Normally when an MRI is completed so soon following a discectomy, the films are typically very difficult to read. There are numerous air pockets, shadows and open spaces that can be misinterpreted by the radiologist. When it came to my images, however, the radiologist made it very clear: The partial disc remaining in L5/S1 had re-herniated in the space left open by the removed disc. It was now pressing up against my spinal cord.
My doctor said he always go in and remove the rest of disc, and end it at that. The problem with that option, is that there is the likelihood that in three months I would be back in surgery. Also, the two discs above my L5/S1 are having problems. Considering my weight and frame, my spine could eventually tumble like dominoes.
The route we decided to go was a two-part surgery. I am having a graft implanted, and then a fusion between my L5 and S1. I am scheduled for the implant on the morning of September 19th. The fusion is scheduled for scheduled for September 20th.
In case you were wondering about the process involved, I brought pictured and diagrams. Pour yourself a drink. Take a seat. This may take a moment.
Everything takes place over the course of two surgeries. During the first one, an incision is made along my "bikini area", (I look amazing in a bikini, BTW) and my intestines are gently set aside. My surgeon will make an incision at what would be the front of my spine, and scoop out the remaining pieces of disc that are currently in there. He will then insert a plastic graft, sort of like a fake disc. It looks like this:
The photo above is one that I took of a model at my surgeon's office. The graft that you see is much like the one that will be implanted in my spine. It's hollow and will be filled with bone fragments, that, from what I think I understand, will eventually turn into bone? There are a couple of major differences between the one in the pic and the type that they'll use on me. In the model, the graft is in the L4/L5 slot. My herniation is in L5/S1, so imagine the graft one place lower. Also, since L5/S1 is the lowest disc on the spine, and the one closest to the hip bone, the long/rectangular graft that you see would bump into the hip bone if inserted. I will need a thicker graft, with more of a square shape.
By June 30th, I had to have my first epidural to help ease the pain. The pain was so bad, they completed a series of MRIs to verify that I didn't a hematoma in my spine. I didn't. The epidural had no effect. I had two additional epidurals on July 14th, and again on August 4th. Again, no results.
I had a chance to see my surgeon last Friday, the 19th. Normally when an MRI is completed so soon following a discectomy, the films are typically very difficult to read. There are numerous air pockets, shadows and open spaces that can be misinterpreted by the radiologist. When it came to my images, however, the radiologist made it very clear: The partial disc remaining in L5/S1 had re-herniated in the space left open by the removed disc. It was now pressing up against my spinal cord.
My doctor said he always go in and remove the rest of disc, and end it at that. The problem with that option, is that there is the likelihood that in three months I would be back in surgery. Also, the two discs above my L5/S1 are having problems. Considering my weight and frame, my spine could eventually tumble like dominoes.
The route we decided to go was a two-part surgery. I am having a graft implanted, and then a fusion between my L5 and S1. I am scheduled for the implant on the morning of September 19th. The fusion is scheduled for scheduled for September 20th.
In case you were wondering about the process involved, I brought pictured and diagrams. Pour yourself a drink. Take a seat. This may take a moment.
Everything takes place over the course of two surgeries. During the first one, an incision is made along my "bikini area", (I look amazing in a bikini, BTW) and my intestines are gently set aside. My surgeon will make an incision at what would be the front of my spine, and scoop out the remaining pieces of disc that are currently in there. He will then insert a plastic graft, sort of like a fake disc. It looks like this:
 |
| Model of graft in L4/L5 disc |
Since my surgery isn't scheduled until 11:30AM, they won't have enough time to complete both procedures on the same day. The next morning is when the magic happens.
An incision is made - this time on my back (cue suspenseful music). A set of four screws are set into my vertebrae, two on each side to secure, what is essentially a titanium brace, to my spine. My first two questions, as I'm sure are yours: Will I set off airport metal detectors? And, Is the fusion magnetic? Can I still get an MRI? Fortunately, the answer to both are No. I can still get an MRI. Titanium is not magnetic. From what I have been told the placement of the "anchors" should not be painful since bone does not have any nerve.
Keep in mind, the placement of my fusion will be one slot lower than that of the picture, since the model has a fusion of L4/L5, and I need a fusion of L5/S1.
So, what's in store after that? A lot of lying down. I'm required to wear a back brace for the next four months, as well as those really tight thigh highs that keep you from getting blood clots (I forget what they're called).
For the first four months after surgery, I'm not allowed to bend over, lift anything over 5 pounds or sit for more than ten minutes at a time. To put it simply....
- Sleeping
- Netflix
- Video Games
- ...and a metric shitload of blogging.
I'm not going to enjoy it anymore than you will, believe me.
Friday, May 20, 2011
Medical Update (Possibly The Last Post For A While)
The last two weeks have seen much of the same. I'm starting to lose the ability to walk again. As of last night, I'm lurching when I walk, and am losing bowel control off and on.
If there is any good news to take away from these last two to three weeks, I am officially disabled. I received notification from Social Security on the day that I came home from the hospital a couple of weeks ago, that my latest appeal was approved. Medicare goes into effect in October. My first Social Security check should be in the mail next month. This is from my initial claim regarding my Tourette's Syndrome and PTSD. I'm approved through May of 2015. Once I get this current situation figured out, I should be golden for the rest of my life.
Speaking of my current condition, I saw a spinal surgeon on Wednesday. He first read the reports from my spinal MRIs and said that I should be helped with pain medication and therapy. Then he pulled up the images. The first word out of his mouth was "Jesus". He said the report was "highly underestimated". There is a disc herniation near my tail bone that is almost pressing on my spinal cord. He immediately ordered an epidural for the pain to be administered at a local hospital. (It has to be approved by insurance first, so I probably won't have it until mid next week.) He also ordered a standing MRI. There is a possibility that the disc is pushing out further while I am sitting or standing than when I am laying down. If so, it could be pinching my spinal cord or a nerve that controls my leg or bowel functions.
About 3 weeks ago, I had an SSEP. It's a test to measure how quickly your nerves pass a signal from a point in your body to your brain and back. When you have it done on your legs, an electrode is placed on your knee. When the shock goes to your knee, your big toe is supposed to twitch.
The first test I had, they couldn't get the big toe on my right foot to twitch. My neurologist ordered a second test, thinking the technician did it incorrectly. They didn't.
I had it done a second time last week. This time around, not only did the big toe on EITHER toe not twitch, but I couldn't feel the shock at all in either of my knees. My neurologist called me Wednesday night to go over the results of the second test. He said that I had some "latency issues". When I pressed him for some additional details, he said, "In simple terms, your brain never got the signal. It reached your back and stopped. Basically, your brain doesn't know that your legs exist." Two weeks prior, I had normal readings on my left leg. Now, they can't get a reading at all from my left leg.
He was going to call my new spinal doctor at home and recommend spinal surgery. As far as a time frame goes...I don't know. Hopefully, the MRI will provide some answers. If not, he may need to open me up, and just start looking around. Needless to say at this point, I have some serious neurological shit going on.
I am stressed out beyond imagination. At the moment, I am visiting friends in Tucson. I don't want to deal with this. I don't know how to deal with this.
Right now, I don't want to write anymore. Not for a while, at least. I just don't have the energy for it. Seems more and more like there are 19 things I want to write about, but I only have it in me to do one or two quick little blurbs. It does nothing but frustrate me, and that's the last thing I need right now.
If there is any good news to take away from these last two to three weeks, I am officially disabled. I received notification from Social Security on the day that I came home from the hospital a couple of weeks ago, that my latest appeal was approved. Medicare goes into effect in October. My first Social Security check should be in the mail next month. This is from my initial claim regarding my Tourette's Syndrome and PTSD. I'm approved through May of 2015. Once I get this current situation figured out, I should be golden for the rest of my life.
Speaking of my current condition, I saw a spinal surgeon on Wednesday. He first read the reports from my spinal MRIs and said that I should be helped with pain medication and therapy. Then he pulled up the images. The first word out of his mouth was "Jesus". He said the report was "highly underestimated". There is a disc herniation near my tail bone that is almost pressing on my spinal cord. He immediately ordered an epidural for the pain to be administered at a local hospital. (It has to be approved by insurance first, so I probably won't have it until mid next week.) He also ordered a standing MRI. There is a possibility that the disc is pushing out further while I am sitting or standing than when I am laying down. If so, it could be pinching my spinal cord or a nerve that controls my leg or bowel functions.
About 3 weeks ago, I had an SSEP. It's a test to measure how quickly your nerves pass a signal from a point in your body to your brain and back. When you have it done on your legs, an electrode is placed on your knee. When the shock goes to your knee, your big toe is supposed to twitch.
The first test I had, they couldn't get the big toe on my right foot to twitch. My neurologist ordered a second test, thinking the technician did it incorrectly. They didn't.
I had it done a second time last week. This time around, not only did the big toe on EITHER toe not twitch, but I couldn't feel the shock at all in either of my knees. My neurologist called me Wednesday night to go over the results of the second test. He said that I had some "latency issues". When I pressed him for some additional details, he said, "In simple terms, your brain never got the signal. It reached your back and stopped. Basically, your brain doesn't know that your legs exist." Two weeks prior, I had normal readings on my left leg. Now, they can't get a reading at all from my left leg.
He was going to call my new spinal doctor at home and recommend spinal surgery. As far as a time frame goes...I don't know. Hopefully, the MRI will provide some answers. If not, he may need to open me up, and just start looking around. Needless to say at this point, I have some serious neurological shit going on.
I am stressed out beyond imagination. At the moment, I am visiting friends in Tucson. I don't want to deal with this. I don't know how to deal with this.
Right now, I don't want to write anymore. Not for a while, at least. I just don't have the energy for it. Seems more and more like there are 19 things I want to write about, but I only have it in me to do one or two quick little blurbs. It does nothing but frustrate me, and that's the last thing I need right now.
Tuesday, March 22, 2011
An Update On My Health aka "It's A Long Story"
There is a longstanding tradition on Tumblr, in which bloggers participate in "TMI (Too Much Information) Tuesdays". It looks as though I'm going to carry that tradition over to Blogspot with this post.
You may have noticed that I have been relatively absent over the last two to three weeks. I would like to say that I have been on Spring Break in Ft. Lauderdale. Sadly, that hasn't been the case. Instead, I have spent most of the last two weeks in two different hospitals. Connected to machines, being poked and prodded every fifteen minutes, and being served food I wouldn't even give my dog.
The problems started two weeks ago. I was walking in Petsmart around noon with my little girl and my legs gave out. My knees buckled. If it wasn't for the fact that I was pushing a shopping cart, I would have hit the ground. Fifteen minutes later, it happened again. Then again a half hour later. I didn't have any pain in my legs. They weren't weak at all. It was like someone flipped off a switch in my brain and quickly switched it back on again. Someone pressed a reset button for my legs.
At about four o'clock that afternoon, I was chasing after my daughter at the mall, and it happened a fourth time. That was when I started to freak out. I called my primary physician, and explained to him the situation. I asked him whether I should come into urgent care or go to the hospital. He said that considering my symptoms, he wouldn't have any of the equipment necessary to test for potential conditions. He referred me to the hospital.
I got to the hospital on Monday night at around 8PM. After explaining what had happened over the course of the day, they took me back to triage to get some blood samples taken. Meanwhile, they called my neurologist.
Let me tell you how much of a rock star my neurologist is. I am sitting in the waiting room, and the nurse comes out, a little dumbfounded, and says, "I don't know who your doctor is, but you need to stay with him." "Our MRI team went home four hours ago, and your doctor is forcing our doctors to call them at home and make them come back in." (Yeah, he's a BAMF.) He informed the ER doctors that they must admit me, and not to release me until a certain list of tests were done and results were in.
When I was admitted to my room, I was informed that my blood sugar that night was 346. I had had a Coke and a cocoa from Starbucks over the course of the day, but, besides that, I didn't have anything to eat since 11AM. My blood sugar should have been around 100 or less. I also found out that my A1C, the 3 month average of my glucose levels, was at 9.7. They should be below a 6. I had them checked roughly 6 weeks prior, and there were no red flags from my doctor. A 9.7 A1C is a level that makes you insulin dependent. So, in a matter of six weeks, my pancreas had effectively stopped working. It's not as if I am a Type 2 Diabetic now. I didn't get this way from being a fat bastard that couldn't control his diet. We're talking six weeks. Going from healthy, to daily insulin shots.
My primary physician calls it "Type 3 Diabetes". It's obviously not Type 2. It has the same features as Type 1. It appears to be an autoimmune response. But, Type 1 initially appears in juvenile patients only. That being said, I don't have Type 1. So, I have "Type 3", or maybe "Type 1B".
Oh, and get this: I found out, when I checked into the hospital two weeks ago, that since December of last year, I've lost 50 lbs. (I've lost 10 more since then.) I haven't changed my diet at all. I haven't exercised. I'm still taking in just as many calories as I did four months ago. I haven't weighed this much since I was a junior in high school. Don't get me wrong. I needed to lose the weight anyway, but to lose it so quickly, without trying, is a little scary.
So while I'm in the hospital (the first time), I have an EEG (brain scan), a CAT scan, and 6 hours inside an MRI. They get a full workup of my brain and head, my neck, and my complete spine. They find absolutely nothing to explain what would make me collapse. What they did find out was pretty remarkable, though. The normal brain on an MRI looks like this:
My brain is a little abnormal. It doesn't sit straight in my skull. It's slanted back. It's the creepiest thing. If I can figure out how to break the copyright encryption on the imaging DVD, I'll post some pics of my images. I also found out that I have either 6 or 7 herniated discs in my back. Some aren't so bad. Some are. The doctor at the hospital said that he's surprised that I'm not complaining of back pain. There are a couple of herniations that are pressing on my spine. My spine doesn't curve like it's supposed to. It's pretty much dead straight. I have follow up appointments now to determine the seriousness of the herniations, to see if spinal surgery may be needed. If so, they will have to enter through my breastbone. From what I have been told, it's pretty gruesome. Estimated downtime is six months after the procedure.
And now, for something completely different....
(For you 'Big Love' fans out there. That was Julia Nunes, singing the Beach Boys' 'God Only Knows')
OK. Moving on. I was released on Thursday, the 10th, and saw my neurologist the following Monday, the 15th. He pretty much ruled out Multiple Sclerosis, but wanted to do a couple more tests, just to make sure. During the neurological exam, he very quietly mentioned ALS to his assistant a couple of times. ALS is commonly known as Lou Gehrig Disease. It's fatal. Usually, from the time you're diagnosed with it, you're dead within 3-6 years. ALS doesn't show up on an MRI. It really doesn't show up anywhere. The only way to diagnose it is to test for everything else, and if everything else comes back negative, ALS is the likely culprit.
Tuesday the 16th, I was OK. My legs were weak, but I was able to walk fine with the walker that the hospital provided me the week before. Then at about 2PM, my legs just stopped working. It was like someone cut the strings off of a marionette. An hour later, I lost control of my bowels and my bladder. About two hours after that, the bones in my upper arms became so sore, it felt like someone was trying to dislocate my shoulders. I had no strength in my upper extremities. I called my neurologist. He called me back and said to get admitted immediately at the Mayo Clinic hospital here in Phoenix.
Within a half hour of getting in to the ER at Mayo, they had already drawn 16 vials of blood. At 2AM, I had a neurologist at my bedside doing an exam and asking me questions. It was impressive to see a staff like that operating in the middle of the night. At 8AM every morning, I had a team of 6 neurologists standing at the foot of my bed, discussing their plan for me for the day.
I had more MRIs completed, and an EMG. Let me tell you, an EMG sucks. They put little pads on different spots on your arm, hand, leg and foot, then they stick what amounts to a miniature cattle prod up to various points on your body where nerves are supposed to be. Then they test the speed of that electrical signal. It hurts like a motherfucker, and your leg is just bouncing across the bed, like you're keeping time to a song in your head. If that isn't enough, then they stick a two inch long wire into certain muscle groups to check for an electrical signal. Once the wire is in, you have to relax or flex a specific muscle. Then they move the wire around until they find the signal they're looking for, like it's an AM radio station that's broadcasting from your thigh.
Last Friday morning was exceptionally noteworthy. I had two gentlemen from physical therapy come in to work with me. They brought a pair of three pound dumbbells with them for me to exercise with. My upper body was so weak, and still is, that they had to exchange them for two pound weights because I couldn't lift the three pound weights over my head. Then they had me do leg raises while sitting on my bed. Once I lifted my leg to a particular height with either leg, I would get a jolt of electricity through my leg, and twitch.
They had me stand up and try to march in place. I started with my left. First left. Then right. Then left again. As I started to lift my right leg up for the second time, I started to shake. My whole body went into what I can only describe as a full body stutter. I couldn't talk. I couldn't move, other than to keep shaking. It lasted for more than 45 seconds. I have had tens of thousands of Tourette's tics over the last five years, and let me tell you, this was not a Tourette's tic. This was a seizure.
I told the neurologist 20 minutes later when he came in to see me. He said that it was impossible for me to have a seizure, simply because I did not pass out. I was conscious during the event. It was then that I started to get the feeling that Mayo wasn't going to be of much help to me.
A couple of hours later, a neurologist came in and told me that I was going to be released. They told me that I had no nerve damage, and, that I was being diagnosed with a "movement disorder". NO SHIT. They couldn't tell me what brought on said "movement disorder", but suggested that it may be attributed to recent stress. Keep in mind, I still can't walk. My upper body is still so weak, that I have to lay back and rest after reading the newspaper for five minutes or so. And the whole bladder/bowel thing? It's still a little sketchy. The neurologist, a condescending, mid twenty-something, holier than thou bitch, actually had the balls to suggest that I see my therapist (my psychologist) once a week to try to get my legs working again. She also is scheduling me for physical therapy three times a week, which I can't afford. What I don't understand is this: If this is a movement disorder, in the same spectrum as my Tourette's Syndrome, of what benefit would physical therapy be? Physical therapy can't fix my Tourette's. How can it fix this? It's not a problem with my muscles.
In the course of our conversation, the neurologist said, "You're fine as far as we can tell". I replied, "I can't fucking walk". She said, "Well, you can with a walker".
They gave up on me. I wasn't bleeding. I wasn't dieing. They did a series of blood work, an hour of MRIs, and an EMG. From the moment I walked in, they had originally thought I had a condition called Guillain-Barre Syndrome. When tests turned out that I didn't, they let me go. This is one of the most respected hospitals in the nation. People come here from all around the world specifically just to be treated at this facility because of their reputation. I would have rather gone back to the hospital I was originally at.
So, I'm home now. I still can't walk. I started having convulsions yesterday. I called MY neurologist yesterday for further instructions. He is on vacation until April 4th. His business partner may see me, or I may be sent to another hospital this week. He is really good about getting back to me, even when he is out of his office. He once returned my call from his cell phone when he was in the airport in Lubbock, Texas. I told you, he's a BAMF.
I would like to thank everyone for their kind words, both on the blog, and on Facebook. It's nice to know that so many of you are concerned, and you are all strangers. Thank you so much. You keep me going some days.
You may have noticed that I have been relatively absent over the last two to three weeks. I would like to say that I have been on Spring Break in Ft. Lauderdale. Sadly, that hasn't been the case. Instead, I have spent most of the last two weeks in two different hospitals. Connected to machines, being poked and prodded every fifteen minutes, and being served food I wouldn't even give my dog.
The problems started two weeks ago. I was walking in Petsmart around noon with my little girl and my legs gave out. My knees buckled. If it wasn't for the fact that I was pushing a shopping cart, I would have hit the ground. Fifteen minutes later, it happened again. Then again a half hour later. I didn't have any pain in my legs. They weren't weak at all. It was like someone flipped off a switch in my brain and quickly switched it back on again. Someone pressed a reset button for my legs.
At about four o'clock that afternoon, I was chasing after my daughter at the mall, and it happened a fourth time. That was when I started to freak out. I called my primary physician, and explained to him the situation. I asked him whether I should come into urgent care or go to the hospital. He said that considering my symptoms, he wouldn't have any of the equipment necessary to test for potential conditions. He referred me to the hospital.
I got to the hospital on Monday night at around 8PM. After explaining what had happened over the course of the day, they took me back to triage to get some blood samples taken. Meanwhile, they called my neurologist.
Let me tell you how much of a rock star my neurologist is. I am sitting in the waiting room, and the nurse comes out, a little dumbfounded, and says, "I don't know who your doctor is, but you need to stay with him." "Our MRI team went home four hours ago, and your doctor is forcing our doctors to call them at home and make them come back in." (Yeah, he's a BAMF.) He informed the ER doctors that they must admit me, and not to release me until a certain list of tests were done and results were in.
When I was admitted to my room, I was informed that my blood sugar that night was 346. I had had a Coke and a cocoa from Starbucks over the course of the day, but, besides that, I didn't have anything to eat since 11AM. My blood sugar should have been around 100 or less. I also found out that my A1C, the 3 month average of my glucose levels, was at 9.7. They should be below a 6. I had them checked roughly 6 weeks prior, and there were no red flags from my doctor. A 9.7 A1C is a level that makes you insulin dependent. So, in a matter of six weeks, my pancreas had effectively stopped working. It's not as if I am a Type 2 Diabetic now. I didn't get this way from being a fat bastard that couldn't control his diet. We're talking six weeks. Going from healthy, to daily insulin shots.
My primary physician calls it "Type 3 Diabetes". It's obviously not Type 2. It has the same features as Type 1. It appears to be an autoimmune response. But, Type 1 initially appears in juvenile patients only. That being said, I don't have Type 1. So, I have "Type 3", or maybe "Type 1B".
Oh, and get this: I found out, when I checked into the hospital two weeks ago, that since December of last year, I've lost 50 lbs. (I've lost 10 more since then.) I haven't changed my diet at all. I haven't exercised. I'm still taking in just as many calories as I did four months ago. I haven't weighed this much since I was a junior in high school. Don't get me wrong. I needed to lose the weight anyway, but to lose it so quickly, without trying, is a little scary.
So while I'm in the hospital (the first time), I have an EEG (brain scan), a CAT scan, and 6 hours inside an MRI. They get a full workup of my brain and head, my neck, and my complete spine. They find absolutely nothing to explain what would make me collapse. What they did find out was pretty remarkable, though. The normal brain on an MRI looks like this:
I found out that I have what is called a Chiari Malformation. That means that the way my brain grew in my skull, the tonsils, or the little nubs on the bottom of my cerebellum hang down below my skull. Mine actually rest on my spine. It may explain why I have migraines as often as I do, as well as constant pain in the base of my skull. Here is a picture of an MRI of someone with a Chiari Malformation. THIS IS NOT MY MRI.
And now, for something completely different....
(For you 'Big Love' fans out there. That was Julia Nunes, singing the Beach Boys' 'God Only Knows')
OK. Moving on. I was released on Thursday, the 10th, and saw my neurologist the following Monday, the 15th. He pretty much ruled out Multiple Sclerosis, but wanted to do a couple more tests, just to make sure. During the neurological exam, he very quietly mentioned ALS to his assistant a couple of times. ALS is commonly known as Lou Gehrig Disease. It's fatal. Usually, from the time you're diagnosed with it, you're dead within 3-6 years. ALS doesn't show up on an MRI. It really doesn't show up anywhere. The only way to diagnose it is to test for everything else, and if everything else comes back negative, ALS is the likely culprit.
Tuesday the 16th, I was OK. My legs were weak, but I was able to walk fine with the walker that the hospital provided me the week before. Then at about 2PM, my legs just stopped working. It was like someone cut the strings off of a marionette. An hour later, I lost control of my bowels and my bladder. About two hours after that, the bones in my upper arms became so sore, it felt like someone was trying to dislocate my shoulders. I had no strength in my upper extremities. I called my neurologist. He called me back and said to get admitted immediately at the Mayo Clinic hospital here in Phoenix.
Within a half hour of getting in to the ER at Mayo, they had already drawn 16 vials of blood. At 2AM, I had a neurologist at my bedside doing an exam and asking me questions. It was impressive to see a staff like that operating in the middle of the night. At 8AM every morning, I had a team of 6 neurologists standing at the foot of my bed, discussing their plan for me for the day.
I had more MRIs completed, and an EMG. Let me tell you, an EMG sucks. They put little pads on different spots on your arm, hand, leg and foot, then they stick what amounts to a miniature cattle prod up to various points on your body where nerves are supposed to be. Then they test the speed of that electrical signal. It hurts like a motherfucker, and your leg is just bouncing across the bed, like you're keeping time to a song in your head. If that isn't enough, then they stick a two inch long wire into certain muscle groups to check for an electrical signal. Once the wire is in, you have to relax or flex a specific muscle. Then they move the wire around until they find the signal they're looking for, like it's an AM radio station that's broadcasting from your thigh.
Last Friday morning was exceptionally noteworthy. I had two gentlemen from physical therapy come in to work with me. They brought a pair of three pound dumbbells with them for me to exercise with. My upper body was so weak, and still is, that they had to exchange them for two pound weights because I couldn't lift the three pound weights over my head. Then they had me do leg raises while sitting on my bed. Once I lifted my leg to a particular height with either leg, I would get a jolt of electricity through my leg, and twitch.
They had me stand up and try to march in place. I started with my left. First left. Then right. Then left again. As I started to lift my right leg up for the second time, I started to shake. My whole body went into what I can only describe as a full body stutter. I couldn't talk. I couldn't move, other than to keep shaking. It lasted for more than 45 seconds. I have had tens of thousands of Tourette's tics over the last five years, and let me tell you, this was not a Tourette's tic. This was a seizure.
I told the neurologist 20 minutes later when he came in to see me. He said that it was impossible for me to have a seizure, simply because I did not pass out. I was conscious during the event. It was then that I started to get the feeling that Mayo wasn't going to be of much help to me.
A couple of hours later, a neurologist came in and told me that I was going to be released. They told me that I had no nerve damage, and, that I was being diagnosed with a "movement disorder". NO SHIT. They couldn't tell me what brought on said "movement disorder", but suggested that it may be attributed to recent stress. Keep in mind, I still can't walk. My upper body is still so weak, that I have to lay back and rest after reading the newspaper for five minutes or so. And the whole bladder/bowel thing? It's still a little sketchy. The neurologist, a condescending, mid twenty-something, holier than thou bitch, actually had the balls to suggest that I see my therapist (my psychologist) once a week to try to get my legs working again. She also is scheduling me for physical therapy three times a week, which I can't afford. What I don't understand is this: If this is a movement disorder, in the same spectrum as my Tourette's Syndrome, of what benefit would physical therapy be? Physical therapy can't fix my Tourette's. How can it fix this? It's not a problem with my muscles.
In the course of our conversation, the neurologist said, "You're fine as far as we can tell". I replied, "I can't fucking walk". She said, "Well, you can with a walker".
They gave up on me. I wasn't bleeding. I wasn't dieing. They did a series of blood work, an hour of MRIs, and an EMG. From the moment I walked in, they had originally thought I had a condition called Guillain-Barre Syndrome. When tests turned out that I didn't, they let me go. This is one of the most respected hospitals in the nation. People come here from all around the world specifically just to be treated at this facility because of their reputation. I would have rather gone back to the hospital I was originally at.
So, I'm home now. I still can't walk. I started having convulsions yesterday. I called MY neurologist yesterday for further instructions. He is on vacation until April 4th. His business partner may see me, or I may be sent to another hospital this week. He is really good about getting back to me, even when he is out of his office. He once returned my call from his cell phone when he was in the airport in Lubbock, Texas. I told you, he's a BAMF.
I would like to thank everyone for their kind words, both on the blog, and on Facebook. It's nice to know that so many of you are concerned, and you are all strangers. Thank you so much. You keep me going some days.
Subscribe to:
Comments (Atom)
