It has been way to long since I have posted anything.
A year has passed since my decompression and I am not much better. In fact, I am worse than I was prior to surgery. My pain is constant and no one seems to want to treat me due to the lack of knowledge of Chiari. I recently went to see my Neruosurgeon to find out why I am unable to move my right arm. After more CT's the conclusion was that it is not nerve or Chiari related and there is nothing more they can do for me. They did call me with good news today. They are making me an appointment with a Pain Management Clinic. I am hoping beyond hope that I will finally be in less pain and have some sort of normality back in my life.
Moving on to the mental health portion of this post.....
I never realized how much pain and mental well being go hand in hand. I have found myself falling into serious depression. I have anxiety/panic attacks daily, sometimes as many as 4 a day. The part that scares me the most is when I start feeling as if my family would be better off without me. That is when I knew there was a MAJOR problem. A Chiari friend of mine on facebook told me to stop and think about what it would be like 24 hours after I was gone. How would my family be acting? That really made me stop in my tracks. I am in no way saying that I want to commit suicide, but I understand from my heart why people in chronic pain do attempt/commit suicide.
I have been trying my hardest to "push through" all the emotional pain and physical pain I have been in without bothering my family and friends. But you know what????? It is nothing to be ashamed of. KNOWING when you need help is the first step. I finally opened up and told my husband that I can't continue to keep all my pain and emotions inside. It is causing me even more pain.
I am hoping that since I have decided depression is nothing to be ashamed of, I will finally be able to get the help I need and can continue to post more often here. I think and hope that this blog will not only help me, but can help others too.
Love to you all!!!!!!!
Oct 10, 2011
Mar 14, 2011
Sorry....
It has been awhile since I last posted anything on here. I have been a busy girl!! We have moved back to Jonesboro, my disability was approved but I won't get my Medicare until December 2012.... so until then, I have no insurance, no meds and so far, I have been in a lot of pain. But I will survive!!!
We got a new puppy the other day. He is a cutie and he keeps a smile on my face! It is amazing how animals can make you feel some what better...His name is Flip Flop. He is part Chihuahua and Terrier.
The kids are happy being back in their old schools. That makes me feel better too! Sam on the other hand, has been having problems with his sugar. So now we are on the long journey of getting him back to normal.
All in all, things are going good and I continue to pray that more research will be done to help those with Chiari.
Sorry it took so long to post and sorry this is short...But my ability to sit up for any amount of time has decreased as the days go by. Especially without having my meds. I will try to do better!!!
Love to all!!!!
We got a new puppy the other day. He is a cutie and he keeps a smile on my face! It is amazing how animals can make you feel some what better...His name is Flip Flop. He is part Chihuahua and Terrier.
The kids are happy being back in their old schools. That makes me feel better too! Sam on the other hand, has been having problems with his sugar. So now we are on the long journey of getting him back to normal.
All in all, things are going good and I continue to pray that more research will be done to help those with Chiari.
Sorry it took so long to post and sorry this is short...But my ability to sit up for any amount of time has decreased as the days go by. Especially without having my meds. I will try to do better!!!
Love to all!!!!
Feb 9, 2011
Emergency Room
I haven't posted anything in a couple of days....This past Sunday, I had to make a trip to the ER due to severe pain in my neck, shoulders and back. I just knew I had ruptured another disc in my neck, same pain as before.
After being triaged and listing the many medications I am on, they finally got me back into a room. The doctor came in and told me that he was ordering an MRI on my neck to see if a disc had ruptured and ordered a shot of Toradol and Stadol to help with the pain. Of course these are 2 meds I am already on for pain and they didn't work at home, guess he thought they might help me better if someone stabbed me with a needle while giving them to me.....NOT.
After the MRI, the doctor came back in, imformed me that everything looked the same....which meant I still have a bulging disc and nothing more....told me that he honestly had no clue why I was hurting the way I was and sent me on my way with prescriptions for Flexaril, Steroid pack and Lortabs. Like I need anymore pain meds or muscle relaxers!!! Oh, well.
The next day, Monday, I called my neurologist and let her know what was going on and asked if she could go ahead and set up an appointment for the full brain MRI again. Tax money is coming so I will be able to pay....watch and see if my ER visit didn't go ahead and max me for out of pocket and now I won't have to pay anything!!!
MRI will be done on Feb. 17,2011 at 9am.....also, still haven't heard anything on my disability. I have been trying to think of it as no news is good news....RIGHT????
After being triaged and listing the many medications I am on, they finally got me back into a room. The doctor came in and told me that he was ordering an MRI on my neck to see if a disc had ruptured and ordered a shot of Toradol and Stadol to help with the pain. Of course these are 2 meds I am already on for pain and they didn't work at home, guess he thought they might help me better if someone stabbed me with a needle while giving them to me.....NOT.
After the MRI, the doctor came back in, imformed me that everything looked the same....which meant I still have a bulging disc and nothing more....told me that he honestly had no clue why I was hurting the way I was and sent me on my way with prescriptions for Flexaril, Steroid pack and Lortabs. Like I need anymore pain meds or muscle relaxers!!! Oh, well.
The next day, Monday, I called my neurologist and let her know what was going on and asked if she could go ahead and set up an appointment for the full brain MRI again. Tax money is coming so I will be able to pay....watch and see if my ER visit didn't go ahead and max me for out of pocket and now I won't have to pay anything!!!
MRI will be done on Feb. 17,2011 at 9am.....also, still haven't heard anything on my disability. I have been trying to think of it as no news is good news....RIGHT????
Feb 4, 2011
The Insurance Dilemma
I have been trying to figure out what the point is to having insurance??? I am glad I have it to help pay for my prescriptions, but it doesn't help when you have to have a procedure done and the facility wants $300 up front. When you are unable to work do to a condition that is beyond your control, where do they expect the money to come from? I don't know about you, but my money tree never sprouted in my backyard!!
My mother has been paying for my insurance out of pocket for the last few months just so I can still be covered, thank you Mom!!!
I was set up for an MRI of my whole brain and neck to check for other underlying conditions that may be contributing to my migraines and when the facility called me to confirm my appointment they also wanted to confirm my payment of an arm and a leg....I kindly told them that I would have to reschedule at another date and time. Nice, huh??
The next day, I contacted the doctor's office to let them know what was going on and set up another appointment with them. Well, when I went in we came to the conclusion that all we can do at this point in time is hope and pray that there isn't anything "serious" such as a tumor or lesions that might progress rapidly until the time when I am able to have that MRI done.
I am still trying to figure out why there wasn't a full brain MRI done when all this started??? One would think that might have been an appropriate place to start BEFORE cutting away a section of some one's skull. But what do I know? I'm not a doctor.....
The insurance dilemma is not mine alone. There are so many others that need insurance and don't qualify for one reason or another for State funded insurance. I am one of them. I have no work related income, but I do have child support so that boots me over the income cut off for Medicaid....but, I can't continue to carry my out of pocket insurance forever. So what is a person to do? In my case, I have to suffer, just like so many others....Something just doesn't seem right about this????? The phrase, "Catch 22" comes to mind.
After the month of February, I will no longer have any insurance unless, God willing, my disability is approved. I'm not sure how well my headaches are going to react to not having ANY meds. They already don't get much relief as it is with medication. We shall see.
I continue to pray each and every day for all those in need and in pain. Maybe someday there will be some sort of end to the insurance dilemma!!!
My mother has been paying for my insurance out of pocket for the last few months just so I can still be covered, thank you Mom!!!
I was set up for an MRI of my whole brain and neck to check for other underlying conditions that may be contributing to my migraines and when the facility called me to confirm my appointment they also wanted to confirm my payment of an arm and a leg....I kindly told them that I would have to reschedule at another date and time. Nice, huh??
The next day, I contacted the doctor's office to let them know what was going on and set up another appointment with them. Well, when I went in we came to the conclusion that all we can do at this point in time is hope and pray that there isn't anything "serious" such as a tumor or lesions that might progress rapidly until the time when I am able to have that MRI done.
I am still trying to figure out why there wasn't a full brain MRI done when all this started??? One would think that might have been an appropriate place to start BEFORE cutting away a section of some one's skull. But what do I know? I'm not a doctor.....
The insurance dilemma is not mine alone. There are so many others that need insurance and don't qualify for one reason or another for State funded insurance. I am one of them. I have no work related income, but I do have child support so that boots me over the income cut off for Medicaid....but, I can't continue to carry my out of pocket insurance forever. So what is a person to do? In my case, I have to suffer, just like so many others....Something just doesn't seem right about this????? The phrase, "Catch 22" comes to mind.
After the month of February, I will no longer have any insurance unless, God willing, my disability is approved. I'm not sure how well my headaches are going to react to not having ANY meds. They already don't get much relief as it is with medication. We shall see.
I continue to pray each and every day for all those in need and in pain. Maybe someday there will be some sort of end to the insurance dilemma!!!
Feb 3, 2011
New Link....
I have added a new link to the Conquer Chiari website...it gives alot of interesting information and probably more technical explanations than I can. I hope it will help with any questions!!
I'm Not Crazy. The Pain is Real...
I was really nervous about going to yet another doctor. What was she like? Was she going to think I was crazy? Because I was already feeling pretty crazy by this point!!!
She was great....she still is great, I am still seeing her. She also suffers from migraines, so she actually takes what I say to heart.
Well, we discussed my symptoms, length and severity of the migraines, past history of illnesses...the whole nine yards. This where the "home pharmacy" begins.....She started me out on Neurotin and Verapamil along with some samples of Maxalt, to see if these will work on my migraines....the answer to that is no, at least not for mine. Then we moved on to a different set of meds. I can't really remember the order in which I was placed on and pulled off of some of these, but the list keeps growing.
At this time, February, 2011, I am on Topamax, Fioricet, Stadol and Zanaflex....In the past few months I have been on Zoloft (side effect of Topamax can be depression, oh joy!!!), then that was changed to Cymbalta, which made me nauseous everyday so that is no longer an option. Soma which was changed to the Zanaflex because it works different and my muscle spasms have gotten worse. The list goes on and on. Now, mind you, as of this date and time, these still have not gotten me past my migraines or muscle spasms.
The doctor said that I have what is referred to as Status Migranosis, which means a continual migraine. Since my surgery in October, I have had a total of 5 days without a migraine and those are not back to back days. And they have been after I was given a 3 day regimen of meds to take to try and break the cycle. Well, it works...after the third day, I am usually migraine free. Come the fourth day I am right back where I started.
She also told me that chances are, the reason my Chiari became "active" is due to the fusion surgery I had previously. Remember? Where they had to put me in a harness and pull back in alignment? Any who. The wonderful thing about my Neurologist now, is that she is trying to help me get my disability. She has already told me and "them" that there is no possible way I can work with the pain I am in and the loss of balance I have at times.....She knows I'm not crazy!!!!! The pain I feel is real...
Just a note: always remember that just because someone doesn't "look" sick doesn't mean they aren't. To look at me, you can't tell I have a condition that is debilitating, but I do and it is just as important to spread the word about it as it is for any other serious, life threatening condition.
She was great....she still is great, I am still seeing her. She also suffers from migraines, so she actually takes what I say to heart.
Well, we discussed my symptoms, length and severity of the migraines, past history of illnesses...the whole nine yards. This where the "home pharmacy" begins.....She started me out on Neurotin and Verapamil along with some samples of Maxalt, to see if these will work on my migraines....the answer to that is no, at least not for mine. Then we moved on to a different set of meds. I can't really remember the order in which I was placed on and pulled off of some of these, but the list keeps growing.
At this time, February, 2011, I am on Topamax, Fioricet, Stadol and Zanaflex....In the past few months I have been on Zoloft (side effect of Topamax can be depression, oh joy!!!), then that was changed to Cymbalta, which made me nauseous everyday so that is no longer an option. Soma which was changed to the Zanaflex because it works different and my muscle spasms have gotten worse. The list goes on and on. Now, mind you, as of this date and time, these still have not gotten me past my migraines or muscle spasms.
The doctor said that I have what is referred to as Status Migranosis, which means a continual migraine. Since my surgery in October, I have had a total of 5 days without a migraine and those are not back to back days. And they have been after I was given a 3 day regimen of meds to take to try and break the cycle. Well, it works...after the third day, I am usually migraine free. Come the fourth day I am right back where I started.
She also told me that chances are, the reason my Chiari became "active" is due to the fusion surgery I had previously. Remember? Where they had to put me in a harness and pull back in alignment? Any who. The wonderful thing about my Neurologist now, is that she is trying to help me get my disability. She has already told me and "them" that there is no possible way I can work with the pain I am in and the loss of balance I have at times.....She knows I'm not crazy!!!!! The pain I feel is real...
Just a note: always remember that just because someone doesn't "look" sick doesn't mean they aren't. To look at me, you can't tell I have a condition that is debilitating, but I do and it is just as important to spread the word about it as it is for any other serious, life threatening condition.
Recovery??
After every surgery you are told that there will be some pain but that it will ease up and "we will see you in about 6 weeks for your follow up". Well, my Neurosurgeon's office heard from me MANY times before that 6 week follow up....My headaches were horrible, I could hardly walk without losing my balance (still) and I was absolutely miserable. Just to make sure everyone understands, not all decompression surgeries lead to more problems.....there are some that are successful. All Chiari patients are different and so are their symptoms and recovery times.
The surgeon, in the meantime, has referred me to another Neurologist in Little Rock due to the migraine that I had while in ICU post surgery....we will get to that soon.
But before my 6 week follow up, I was in the ER at the same hospital my surgery was done with another severe migraine and feeling like my brain was on fire. All the time up to now I had still been having "headaches" but was told by the surgeon's nurse that it was all normal, part of the healing process....maybe so, but the one that landed me in the ER was far from normal.....but the ER doctor called the surgeon, who came to see me at the hospital and informed me it was just another migraine and that he looked at the CT scan the ER doc had ordered and everything was healing nicely. After a big shot of Morphine and Phenergan, I was sent on my merry way back home to await my appointment with the new Neurologist. That was the last time I saw my surgeon. Once surgery is complete, it is no longer their problem....at least that is how I was made to feel.
Wow. We are almost up to date......thank you all for your patience if I tend to ramble or get of track......my brain doesn't quite work the way it use to.
The surgeon, in the meantime, has referred me to another Neurologist in Little Rock due to the migraine that I had while in ICU post surgery....we will get to that soon.
But before my 6 week follow up, I was in the ER at the same hospital my surgery was done with another severe migraine and feeling like my brain was on fire. All the time up to now I had still been having "headaches" but was told by the surgeon's nurse that it was all normal, part of the healing process....maybe so, but the one that landed me in the ER was far from normal.....but the ER doctor called the surgeon, who came to see me at the hospital and informed me it was just another migraine and that he looked at the CT scan the ER doc had ordered and everything was healing nicely. After a big shot of Morphine and Phenergan, I was sent on my merry way back home to await my appointment with the new Neurologist. That was the last time I saw my surgeon. Once surgery is complete, it is no longer their problem....at least that is how I was made to feel.
Wow. We are almost up to date......thank you all for your patience if I tend to ramble or get of track......my brain doesn't quite work the way it use to.
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