I know..... many people have written about their own lives and stuff like this.... what your life is about, what happens to you.... why... why... why.... and all that....
I'm making my lists, making goals and not taking this proverbially laying down.
I also have a sneaky feeling my new medications are making me more daring or more opinionated....? I have tried as many medications as I have seen doctors !
I have been told by specialists I have Chiari, I don't have "real" Chiari; I have syringomyelia, I don't have syringomyelia, I have hydromyelia instead....
I finally just got fed up with it and accepted the heavy duty drugs to help with the pain, the doofiness with the drugs is just going to have to be the "new me".... :)
I also sent my MRI information to two renowned specialists in Syringomyelia and Chiari as well as Tarlov cyst (as I'm lucky enough to have one of those, too).
I wish I had a different life, but then what would I wish for? Everyone has their own problems. I used to live on Miami Beach back in the late 1980s, early 1990s and I worked for a very well-respected bank and ended up making money deliveries to the weathy people in the condos who lived within walking distance of the bank..... I met a woman, who got $1500 a week from her account (think of this , back in 1987? WOW)... well, she was the most miserable thing I have ever seen, so that proved to me that money isn't everything and I think I needed to learn that lesson when I did.
I didn't pursue the education that I should have and now I am nothing and do nothing, waiting to be approved for disability. That makes me feel like a huge failure, that I did "nothing" with my life... but how does one quantify nothing? What makes a person a success? What makes them a failure?
In my case, moving straight down to Miami Beach 1 week after graduating high school really didn't give me much of a chance of success.... there was so much going on and coming from a very very very small town, it was overwhelming!!! I went to several different colleges (with promises from my father that he would pay).... and that never happened... so I did community colleges, adult education centers... etc.
Moving back home 8 years later to start over didn't help.
At any rate, I'm here now, feeling like my life is over but I know it's not. I was telling a dear friend that she has to now re-invent herself and I have to do that, too. It's going to be frikin hard at 41!!!!!!!!!
The combination of pain medication I'm on now seems to help so that makes me happy..... but being on heavy-duty drugs does not.
There is alot of stuff rolling around in my head... and having a chronic illness only brings these things to the forefront and into clearer focus... like someone knowing they are going to die and saying, "Gee, what did I DO with my life?"....
I think that is uniquely human to want to DO something with our lives, to want to make an impression (duh, or we wouldn't be human, would we?).
To be continued.....
Friday, November 13, 2009
Monday, August 24, 2009
Long over-due update
I was an avid bike rider, riding up to 30 miles a day on my bike around town. I loved kayaking, hiking, snowshoeing and anything outdoors. You couldn't keep me in the house!
My symptoms started around the time after I had surgery to repair a crushed clavicle with right arm symptoms that I attributed to my accident and surgery. These symptoms never really went away and only seemed to intensify and now I have a constellation of symptoms that seems to never go away.
I have been to over 30 doctors for my condition and I am warned by my PCP (who I feel is clueless) that if I keep going to doctors, I will find someone willing to operate on me and possibly make me worse. What I am doing is looking for the doctor who is going to tell me what is causing my symptoms and what I can do to help myself. I ALREADY know what it is... the CM and SM of course.. but no one wants to tell me straight out that either of these is causing any issues..... this condition is so rare that many doctors are clueless. Of course, leave it to me to get something off the wall like this!!!!
I have a very difficult time walking, standing, wearing socks and shoes. My feet and legs are very painful along with horrible muscle spasms and spasticity. I would think I had MS with these crazy things, but I was assured that I do not... at this time, I am unsure if I believe that.
My syrinx (syringomyelia) runs from about C4 to the end of my spinal cord and varies in width from 4 mm to 2 mm. My brain herniation is about 3 mm (Arnold-Chiari) at this time as diagnosed from the specialists in NY, at The Chiari Institute. I am deeply disappointed in this facility and I don't recommend them at this point. However they have helped thousands of patients (to the best of my knowledge, at least they say they have) and I'm not going to say anymore than that.
I also have degenerative disc disease in my entire spinal cord.. which is a huge shock to me. I was also told that I have a Tarlov cyst at C7-T1, which will be evaluated when I go to Tufts in Boston at the end of September.
I am really excited about this upcoming trip to Boston....I have got my fingers crossed that they will be able to help me.
Currently I have episodes of dizziness so severe that I can't get off the couch and nausea to the point that I am not eating very well, yet the medicine I am on seems to be causing me to gain weight..... which if I was healthy, I would not be on any medication... so this just adds insult to injury.
I have an appointment today with a neurologist so I'm bringing my symptom list and my MRI reports from last year to see what he has to say about it.
I will do better at keeping updated, but my main blog is on myspace.
Wednesday, June 17, 2009
Been a long time!
So, While I'm still trying to incorporate Humor every day.... there is now a glitch in the works. I did end up going to NY, The Chiari Institute Jan 09, and was told that yes, I have an extensive syrinx throughout most of my spinal cord. (cyst in my spinal cord, along with a hemangioma at T2 and Arnold-Chiari malformation).
I had never heard of this until last year! (when I was diagnosed).
I am just so distraught, angry, scared, and disappointed that my life has turned out this way.
The myriad of symptoms I have would fill a book; as well as the feelings that go along with them.
I am resigned to the fact that the rest of my life will be spent dealing with constant pain.
I cannot possibly describe that in terms that will convey understanding to people who have not experienced some sort of trauma in their lives.
There is a very real possibility that I will not be able to walk at some point which terrifies me. I am also concerned about the hemangioma I have in my T2 vertebra. This can burst causing a whole terrible range of problems, even more so, this particular area has nerves that run through it that regulate my heart/lungs.
While none of us ever knows the future ..... we usually can plan it with a small sense of security that all will be well.....
I would also like to add that since I was diagnosed with this condition, 99% of my family members do not speak to me. Not only am I dealing with this condition, I am ALONE dealing with this condition. Which translates to feeling like nothing matters any more.
I have made a few really dear friends from the support group at ASAP.org. Great community as it was when I joined last year.
Syringomyelia is rare; there are people that have it and don't know it and they have no symptoms. There are people like me who have it and are miserable. There are people who have it and it does not bother them that much...
I am not one of the lucky ones.
I had never heard of this until last year! (when I was diagnosed).
I am just so distraught, angry, scared, and disappointed that my life has turned out this way.
The myriad of symptoms I have would fill a book; as well as the feelings that go along with them.
I am resigned to the fact that the rest of my life will be spent dealing with constant pain.
I cannot possibly describe that in terms that will convey understanding to people who have not experienced some sort of trauma in their lives.
There is a very real possibility that I will not be able to walk at some point which terrifies me. I am also concerned about the hemangioma I have in my T2 vertebra. This can burst causing a whole terrible range of problems, even more so, this particular area has nerves that run through it that regulate my heart/lungs.
While none of us ever knows the future ..... we usually can plan it with a small sense of security that all will be well.....
I would also like to add that since I was diagnosed with this condition, 99% of my family members do not speak to me. Not only am I dealing with this condition, I am ALONE dealing with this condition. Which translates to feeling like nothing matters any more.
I have made a few really dear friends from the support group at ASAP.org. Great community as it was when I joined last year.
Syringomyelia is rare; there are people that have it and don't know it and they have no symptoms. There are people like me who have it and are miserable. There are people who have it and it does not bother them that much...
I am not one of the lucky ones.
Thursday, November 6, 2008
A day in the life.....
I posted a lot here since I have been too tired and lethargic to do much of anything for a long time. I copied and pasted from myspace account, so it may not seem like it makes sense, but this is everything that has been going on. I am headed now for a nap.... 10 am..... yeah.
So, I have been having trouble breathing when I exert myself, going up stairs, walking, going grocery shopping.....I brought this to the attention of my PCP and she scheduled me for a pulmonary test to see if I have any problems....... (aside from my long syrinx....? )
So, I walked around with a pulse oximeter on me and my blood oxygen went down to 90% just walking around the hallway! So, I asked the pulmonary technician to slow down that I was not feeling well, and I started to feel a bit better.
Then, I had to sit in a glass box and breathe into a tube attached to a computer and breath monitor to see how I was doing for my height, weight, age, sex, etc. Well, she said I was going fairly good and then part of the test was to give me an albuterol treatment to see if I responded better with my lung function.
Guess what? I had an allergic reaction to the nebulized albuterol and my face got RED, like fire and I was having heart palpitations and she went on with the test anyway and said that I was much worse with the albuterol instead of better, she was very concerned about me and got me some water and then made me breathe some more in the tube which almost caused me to pass out.
I had to sit for a while until my senses came back.
This activity unfortunately caused severe burning back pain between my shoulder blades and I was confined to the couch for the rest of the day when I got home. I was wiped out.
Needless to say, I did not do very well with this test and I am wondering what my PCP will make of this.
Today, I have trigeminal neuralgia symptoms and I am not a happy camper, I was up all night, I could not sleep on the right side of my head or back of my head.... just another day .... dealing with syringomyelia.
Unfortunately, trigeminal neuralgia is also a sign of MS (multiple sclerosis) so hopefully I don't have that, too.
I'm treading water but I think I need a life vest now.
Well, I had my nerve block injections Oct 27, and despite the pre-med of 20 mg of Valium, it HURT! I got home and slept the afternoon away but now my injection sites hurt.....
I have also been out of breath recently so I am going to see my PCP today to see if she can help with that. .....I used to exercise daily like a mad woman.
Oh well. At least my headache is gone. Now I wish the neck pain was gone, too.
So...... I thought one of my vertebra was broken after looking at an MRI done a few weeks ago, horizontally....and come to find out......(drum roll)
I now have the beginning of scoliosis!! Fabulous! I knew syringomyelia caused scoliosis but to actually have this now is just lovely.
According to the radiologist, it is so mild and in his opinion, not worth mentioning!!!! WTF!? Why would that not be worth mentioning? Why do I have to find that? Can we even trust doctors? I mean come on, there are so many people who are relying on doctors and look at me ... I mean, really look at my history. 2006, seeing chiro for neck pain and right arm pain, MRI refused.
Go to different chiro who does his job and tries to get MRI for me which is denied by insurance. I am sent to neurologist who orders MRI of my frikin shoulder!!!! WTF?
I am then sent to PCP who reluctantly orders MRI, but drops the ball and refuses to order any further tests, instead referring me to neurologist, which takes 2 months!!!!!!!!!!!!
The neurologist I worked for ordered rest of my MRIs and finds very long syrinx and then tells me "Don't worry about it"!!! Again WTF?
I do tons and tons of research, hours and hours spent looking up this condition and guess what? ! I DO need to worry about this!
Neurologist I finally see after 2 months tells me I have a headache because of medication rebound from frikin Advil and Excedrin. THANKS!!!! BUT she writes my PCP a letter stating that my symptoms could be caused by my syrinx..... so there is a light at the end of the tunnel and it is not the train....
I then go to Yale University and see a neurosurgeon who tells me that I am a nonsurgical candidate at this point and that my symptoms could not possibly be caused by my syrinx. He suggests pain management and physical therapy.
I then see my PCP again who has the nerve to tell me that my pain is in my head because a neurosurgeon from YALE says my symptoms are not directly related to my syrinx...... I could kick this neurosurgeon.
It takes over a month to get to see a pain managment doctor and then another few weeks for injections, which helped a good deal, but not 100%.
Anyway, I am trying to be positive through this and I should feel lucky to be able to push on despite this crap... however I am getting to the end of my rope.
It is 8:40 am and I am still in my pajamas..... that is lame. I feel like just staying in and doing nothing. Which I can't. I need to get up and get going.... glad the grocery store is only 5 minutes away.
Living with a rare disorder sucks. I don't wish this on anyone. Dealing with doctors that seem incompetent sucks. AT least my PCP is now trying and I certainly appreciate that. I need to print out some stuff for her I think.
Hope you have a good day! I know I will try but actually having a good day is debatable.
If you could predict your future.... I thought I had mine all figured out; I was going to go to dental assisting school this year, graduate next year and get a great job, make pretty good money and then POOF.......GONE!!!
I had the last series of MRIs last week and I finally got the report yesterday. Do you think I'm happy? Far from it. As a matter of fact, I'm pretty angry that the physians that are supposed to be watching out for me are just dropping the ball, constantly.
Your MRI is normal. Done. End. Finished. Go away, kid, you bother me..... and so on.
Me being me, I got all the images on a disc and I looked at them myself. What I found shocked me and made me feel like the doctors that are treating me just plain don't know what to do with my "abnormalities", so they say, everything is normal.
First off, the cyst in my spinal cord has gone from T10 (which it officially ended at in June 08) to the end of my spinal cord. It can't go any further than that, it can only now get wider. Yah frikin hoo. That, my friends, is NOT good, as a matter of fact, that is BAD, probably as bad as it can get, oh, wait, it can go UP, to my brain! Yeah, I forgot to mention that. Will the fun ever end? !
So, I also saw something else that was not mentioned..... on one view of my MRI, where the spinal cord is looked at from the front, (the front being the part that when you look at someone's face, and you can see through them, you would see the front of the spinal cord) I saw where my spinal cord is going along fine, nice and straight, and then about half way down, it jags off to the left like part of a vertebra is cracked through the middle. !!! WTF!!!!??????
Now, I have been having burning pain in the middle of my back for a long time, I can't lean on my back or lay down, etc. (the last time I had that, I found out my coccyx was broken) So, I printed out this particular view and circled this and gave it to my PCP to bring to the radiologist. I also e-mailed a view to my chiropractor. No ONE has gotten back to me on this... Why can't the radiologist actually look at films and report what they see? Is that so difficult?
I also found out that my 5th lumbar vertebra is fused to my sacrum, so I only have 4 lumbar vertebra...apparently I was born with this.....?
I can't wait to get to TCI in New York to see what they have to say about me....
I will let you know one way or the other as soon as I find out. Good thing I'm nosey.
Well....I had sacroiliac joint injections on Friday, Sept 26 due to the severe muscle spasm and pain I have in my low back. I'm happy to say that I got through it without any problems, except that a small amount of the numbing fluid leaked onto my sciatic nerve and made my right leg numb for a few minutes and I could not feel it, but that disappeared and I was fine to drive home. The injections are not that painful but they are uncomfortable; although the numbing before the injection was pretty good at least for the left side, I felt everything on the right side.
I am now able to sit without too much pain for about 2 hours before I have to get up and move around. Before the shots (coccyx, too) I was unable to sit for more than 5 minutes without severe pain.
I also brought this to the attention of my PCP, who suddenly felt bad and ordered a low back MRI for me, at my insistance. I really want to know if my syrinx has grown and if it is affecting my low back, because all of my life, I have never had such pain in my low back; which started in May this year. I did not fall, I did not do anything, as a matter of fact, I had to stop going to the gym due to fatigue and pain (saved some money, too).
I did fall when I was 15 while iceskating, however this has not bothered me for years upon years and finding out that my tailbone is separated, was sort of a shock and the fact that it was suddenly causing a lot of pain was also weird. Broken coccyx can also cause piriformis syndrome, sacroiliac syndrome, so maybe my syrinx is not involved, and it is just bony pain from my broken coccyx, but who knows. Coccyx surgery has a 50% failure rate, and it not recommended. We'll see how these injections help me and for how long.
I will post results of my lumbar MRI as soon as I get them.
On a side note, my hair was hurting my head with pulling it back in a pony tail and washing it and sleeping on it, so I shaved my head....whew! Feels GREAT!!!!
Unfortunately, people now avoid me and stare, but it's okay, I want most people to leave me alone anyway!
So, I have been having trouble breathing when I exert myself, going up stairs, walking, going grocery shopping.....I brought this to the attention of my PCP and she scheduled me for a pulmonary test to see if I have any problems....... (aside from my long syrinx....? )
So, I walked around with a pulse oximeter on me and my blood oxygen went down to 90% just walking around the hallway! So, I asked the pulmonary technician to slow down that I was not feeling well, and I started to feel a bit better.
Then, I had to sit in a glass box and breathe into a tube attached to a computer and breath monitor to see how I was doing for my height, weight, age, sex, etc. Well, she said I was going fairly good and then part of the test was to give me an albuterol treatment to see if I responded better with my lung function.
Guess what? I had an allergic reaction to the nebulized albuterol and my face got RED, like fire and I was having heart palpitations and she went on with the test anyway and said that I was much worse with the albuterol instead of better, she was very concerned about me and got me some water and then made me breathe some more in the tube which almost caused me to pass out.
I had to sit for a while until my senses came back.
This activity unfortunately caused severe burning back pain between my shoulder blades and I was confined to the couch for the rest of the day when I got home. I was wiped out.
Needless to say, I did not do very well with this test and I am wondering what my PCP will make of this.
Today, I have trigeminal neuralgia symptoms and I am not a happy camper, I was up all night, I could not sleep on the right side of my head or back of my head.... just another day .... dealing with syringomyelia.
Unfortunately, trigeminal neuralgia is also a sign of MS (multiple sclerosis) so hopefully I don't have that, too.
I'm treading water but I think I need a life vest now.
Well, I had my nerve block injections Oct 27, and despite the pre-med of 20 mg of Valium, it HURT! I got home and slept the afternoon away but now my injection sites hurt.....
I have also been out of breath recently so I am going to see my PCP today to see if she can help with that. .....I used to exercise daily like a mad woman.
Oh well. At least my headache is gone. Now I wish the neck pain was gone, too.
So...... I thought one of my vertebra was broken after looking at an MRI done a few weeks ago, horizontally....and come to find out......(drum roll)
I now have the beginning of scoliosis!! Fabulous! I knew syringomyelia caused scoliosis but to actually have this now is just lovely.
According to the radiologist, it is so mild and in his opinion, not worth mentioning!!!! WTF!? Why would that not be worth mentioning? Why do I have to find that? Can we even trust doctors? I mean come on, there are so many people who are relying on doctors and look at me ... I mean, really look at my history. 2006, seeing chiro for neck pain and right arm pain, MRI refused.
Go to different chiro who does his job and tries to get MRI for me which is denied by insurance. I am sent to neurologist who orders MRI of my frikin shoulder!!!! WTF?
I am then sent to PCP who reluctantly orders MRI, but drops the ball and refuses to order any further tests, instead referring me to neurologist, which takes 2 months!!!!!!!!!!!!
The neurologist I worked for ordered rest of my MRIs and finds very long syrinx and then tells me "Don't worry about it"!!! Again WTF?
I do tons and tons of research, hours and hours spent looking up this condition and guess what? ! I DO need to worry about this!
Neurologist I finally see after 2 months tells me I have a headache because of medication rebound from frikin Advil and Excedrin. THANKS!!!! BUT she writes my PCP a letter stating that my symptoms could be caused by my syrinx..... so there is a light at the end of the tunnel and it is not the train....
I then go to Yale University and see a neurosurgeon who tells me that I am a nonsurgical candidate at this point and that my symptoms could not possibly be caused by my syrinx. He suggests pain management and physical therapy.
I then see my PCP again who has the nerve to tell me that my pain is in my head because a neurosurgeon from YALE says my symptoms are not directly related to my syrinx...... I could kick this neurosurgeon.
It takes over a month to get to see a pain managment doctor and then another few weeks for injections, which helped a good deal, but not 100%.
Anyway, I am trying to be positive through this and I should feel lucky to be able to push on despite this crap... however I am getting to the end of my rope.
It is 8:40 am and I am still in my pajamas..... that is lame. I feel like just staying in and doing nothing. Which I can't. I need to get up and get going.... glad the grocery store is only 5 minutes away.
Living with a rare disorder sucks. I don't wish this on anyone. Dealing with doctors that seem incompetent sucks. AT least my PCP is now trying and I certainly appreciate that. I need to print out some stuff for her I think.
Hope you have a good day! I know I will try but actually having a good day is debatable.
If you could predict your future.... I thought I had mine all figured out; I was going to go to dental assisting school this year, graduate next year and get a great job, make pretty good money and then POOF.......GONE!!!
I had the last series of MRIs last week and I finally got the report yesterday. Do you think I'm happy? Far from it. As a matter of fact, I'm pretty angry that the physians that are supposed to be watching out for me are just dropping the ball, constantly.
Your MRI is normal. Done. End. Finished. Go away, kid, you bother me..... and so on.
Me being me, I got all the images on a disc and I looked at them myself. What I found shocked me and made me feel like the doctors that are treating me just plain don't know what to do with my "abnormalities", so they say, everything is normal.
First off, the cyst in my spinal cord has gone from T10 (which it officially ended at in June 08) to the end of my spinal cord. It can't go any further than that, it can only now get wider. Yah frikin hoo. That, my friends, is NOT good, as a matter of fact, that is BAD, probably as bad as it can get, oh, wait, it can go UP, to my brain! Yeah, I forgot to mention that. Will the fun ever end? !
So, I also saw something else that was not mentioned..... on one view of my MRI, where the spinal cord is looked at from the front, (the front being the part that when you look at someone's face, and you can see through them, you would see the front of the spinal cord) I saw where my spinal cord is going along fine, nice and straight, and then about half way down, it jags off to the left like part of a vertebra is cracked through the middle. !!! WTF!!!!??????
Now, I have been having burning pain in the middle of my back for a long time, I can't lean on my back or lay down, etc. (the last time I had that, I found out my coccyx was broken) So, I printed out this particular view and circled this and gave it to my PCP to bring to the radiologist. I also e-mailed a view to my chiropractor. No ONE has gotten back to me on this... Why can't the radiologist actually look at films and report what they see? Is that so difficult?
I also found out that my 5th lumbar vertebra is fused to my sacrum, so I only have 4 lumbar vertebra...apparently I was born with this.....?
I can't wait to get to TCI in New York to see what they have to say about me....
I will let you know one way or the other as soon as I find out. Good thing I'm nosey.
Well....I had sacroiliac joint injections on Friday, Sept 26 due to the severe muscle spasm and pain I have in my low back. I'm happy to say that I got through it without any problems, except that a small amount of the numbing fluid leaked onto my sciatic nerve and made my right leg numb for a few minutes and I could not feel it, but that disappeared and I was fine to drive home. The injections are not that painful but they are uncomfortable; although the numbing before the injection was pretty good at least for the left side, I felt everything on the right side.
I am now able to sit without too much pain for about 2 hours before I have to get up and move around. Before the shots (coccyx, too) I was unable to sit for more than 5 minutes without severe pain.
I also brought this to the attention of my PCP, who suddenly felt bad and ordered a low back MRI for me, at my insistance. I really want to know if my syrinx has grown and if it is affecting my low back, because all of my life, I have never had such pain in my low back; which started in May this year. I did not fall, I did not do anything, as a matter of fact, I had to stop going to the gym due to fatigue and pain (saved some money, too).
I did fall when I was 15 while iceskating, however this has not bothered me for years upon years and finding out that my tailbone is separated, was sort of a shock and the fact that it was suddenly causing a lot of pain was also weird. Broken coccyx can also cause piriformis syndrome, sacroiliac syndrome, so maybe my syrinx is not involved, and it is just bony pain from my broken coccyx, but who knows. Coccyx surgery has a 50% failure rate, and it not recommended. We'll see how these injections help me and for how long.
I will post results of my lumbar MRI as soon as I get them.
On a side note, my hair was hurting my head with pulling it back in a pony tail and washing it and sleeping on it, so I shaved my head....whew! Feels GREAT!!!!
Unfortunately, people now avoid me and stare, but it's okay, I want most people to leave me alone anyway!
Sunday, October 5, 2008
Living with syringomyelia
It has been a long time since I posted anything. I have been to so many doctors that I am losing count. I am in pain most of the time and I am very tired; sometimes too tired to do much of anything.
I was fired at the beginning of the month for missing too much work due to doctor appointments. This story should have it's own blog and maybe some day it will.
I have been going to P/T a few times a week and that does seem to help, however I know this is not a permanent fix.
I have had a pain injection to my tailbone which seemed to be pretty helpful up until last night. The burning pain in my behind is coming back. (yeah).
My arms are now going numb at least several times a day.
For those of you who do not know what syringomyelia is, it is a cyst in the spinal cord that takes up valuable space and compresses the nerves that run through the spinal cord disrupting nerve impulses and signals, causing a lot of pain. The cyst is called a syrinx and is caused by "something", the most common cause is Chiari malformation (in which case, your brain protrudes out of your skull into the top of the spinal column, disrupting spinal fluid flow.) It can also be caused by a tumor, trauma (fall, car accident)or very rarely maybe you were born with it.
I am having a problem with the doctors in my area telling me, "Not to worry about it" and "You are reading too much material and giving yourself these symptoms". "Your symptoms are not directly related to your syrinx"; etc, etc.
I had an x-ray last week showing a separation in my tailbone and I guess that pain is in my head, too?
I started out in August 2006 with severe neck pain, right arm pain and numbness and coldness. I was being treated by a chiropractor at that time who REFUSED to order an MRI for me after several MONTHS of treatment with NO IMPROVEMENT; stating that " I exercize too much and there is nothing wrong with me". **If any malpractice attorneys read this, please contact me. **
I have been in severe pain for years now and if that bonehead chiropractor had ordered an MRI for me of my neck, I would have been able to get treatment sooner and would not have spent so much time in pain! I would love to tell all of you not to go to her, but I don't want to get sued for slander.
I would love to recommend the best chiropractor however who practices out of Putnam, CT, Dr. Barks. He is fabulous and has helped me tremendously in getting my condition diagnosed by pushing for a cervical MRI. He is patient, caring, professional and an overall great physician. I wish there were more doctors like Dr. Barks!
I submitted paperwork to The Chiari Institute in New York for further work up and possible surgery. I KNOW something is wrong with me, it is not in my head (unless it is a brain malformation, then I would agree, it is all in my head) and I will post when my appointment is and any subsequent findings or recommendations.
I NEVER thought that my future would include a rare spinal disorder! How sucky is that!?
So, my ass really hurts so I will sign off for now; keep checking back for updates and more news.
I was fired at the beginning of the month for missing too much work due to doctor appointments. This story should have it's own blog and maybe some day it will.
I have been going to P/T a few times a week and that does seem to help, however I know this is not a permanent fix.
I have had a pain injection to my tailbone which seemed to be pretty helpful up until last night. The burning pain in my behind is coming back. (yeah).
My arms are now going numb at least several times a day.
For those of you who do not know what syringomyelia is, it is a cyst in the spinal cord that takes up valuable space and compresses the nerves that run through the spinal cord disrupting nerve impulses and signals, causing a lot of pain. The cyst is called a syrinx and is caused by "something", the most common cause is Chiari malformation (in which case, your brain protrudes out of your skull into the top of the spinal column, disrupting spinal fluid flow.) It can also be caused by a tumor, trauma (fall, car accident)or very rarely maybe you were born with it.
I am having a problem with the doctors in my area telling me, "Not to worry about it" and "You are reading too much material and giving yourself these symptoms". "Your symptoms are not directly related to your syrinx"; etc, etc.
I had an x-ray last week showing a separation in my tailbone and I guess that pain is in my head, too?
I started out in August 2006 with severe neck pain, right arm pain and numbness and coldness. I was being treated by a chiropractor at that time who REFUSED to order an MRI for me after several MONTHS of treatment with NO IMPROVEMENT; stating that " I exercize too much and there is nothing wrong with me". **If any malpractice attorneys read this, please contact me. **
I have been in severe pain for years now and if that bonehead chiropractor had ordered an MRI for me of my neck, I would have been able to get treatment sooner and would not have spent so much time in pain! I would love to tell all of you not to go to her, but I don't want to get sued for slander.
I would love to recommend the best chiropractor however who practices out of Putnam, CT, Dr. Barks. He is fabulous and has helped me tremendously in getting my condition diagnosed by pushing for a cervical MRI. He is patient, caring, professional and an overall great physician. I wish there were more doctors like Dr. Barks!
I submitted paperwork to The Chiari Institute in New York for further work up and possible surgery. I KNOW something is wrong with me, it is not in my head (unless it is a brain malformation, then I would agree, it is all in my head) and I will post when my appointment is and any subsequent findings or recommendations.
I NEVER thought that my future would include a rare spinal disorder! How sucky is that!?
So, my ass really hurts so I will sign off for now; keep checking back for updates and more news.
Thursday, August 21, 2008
New Diagnosis, New Future
Hi, I don't know if you've missed me, however there have been lots of things going on here.
I have been recently diagnosed with syringomyelia, which means that I have a cyst in my spinal cord, which causes pain, numbness, headaches and other physical dysfunctions and limitations.
I will write more when I can, but my daily witty bits have turned into much more for me now; and will continue to do so.
I have been recently diagnosed with syringomyelia, which means that I have a cyst in my spinal cord, which causes pain, numbness, headaches and other physical dysfunctions and limitations.
I will write more when I can, but my daily witty bits have turned into much more for me now; and will continue to do so.
Friday, March 7, 2008
Not so daily afterall.....hmmmm
Hmmm... Not so daily after all....but should remain witty....as for bits....we'll take them when we can find them.....
Some times getting what you want, is not so great after all....
I post poems here....if you want to use them, I would appreciate a donation, and recognition, please do not use my poems for your own. PayPal is okay.
Are the tears I cry
Only in my mind or
Are there well worn tracks
Down my face…
Is the heartache I feel
Only in my mind
Or is my heart broken
Pieces hanging
Is the sorrow I feel
Only in my mind
Or are you gone
I can’t follow
Are my words echoing
Only in my mind
Or did you hear them
Following you away
Is the love I had
Only in my mind
Or did you feel it
Touch your heart?
Is my happiness
Only in my mind
Or did we share it
Lovers in hand?
Am I waiting
Only in my mind
For you to come back
Or is it me that left?
Am I waiting
Only in my mind
For that tenderness
That was never there?
Are the tears I cry
Only in my mind
For my soul
Wandering alone
Is my truth
Only in my mind
Fearful of the irony
Of being in love?
DB March 2008
Some times getting what you want, is not so great after all....
I post poems here....if you want to use them, I would appreciate a donation, and recognition, please do not use my poems for your own. PayPal is okay.
Are the tears I cry
Only in my mind or
Are there well worn tracks
Down my face…
Is the heartache I feel
Only in my mind
Or is my heart broken
Pieces hanging
Is the sorrow I feel
Only in my mind
Or are you gone
I can’t follow
Are my words echoing
Only in my mind
Or did you hear them
Following you away
Is the love I had
Only in my mind
Or did you feel it
Touch your heart?
Is my happiness
Only in my mind
Or did we share it
Lovers in hand?
Am I waiting
Only in my mind
For you to come back
Or is it me that left?
Am I waiting
Only in my mind
For that tenderness
That was never there?
Are the tears I cry
Only in my mind
For my soul
Wandering alone
Is my truth
Only in my mind
Fearful of the irony
Of being in love?
DB March 2008
Subscribe to:
Posts (Atom)