I have finally visited the Neurologist! I don't know how long it has been and I don't know how I have ended up with this guy. But he knows more about Chiari than any other doctor I have seen beside the 2nd neurosurgeon. I LOVE this man!! I saw him in November and he ordered new MRIs and blood tests. This man talked to me face to face for over and HOUR!! Who does that??? Dr. Orr! Crazy thing is he specializes in Alzheimer's, but this man knows so much about Chiari it is CRAZY!! He explained so much to me that no one ever had. What the spinal fluid is doing, (or not doing), why grunting is so bad for me, I mean all this stuff that would have been super helpful when I was diagnosed 5 years ago. (At least I figured out it wouldn't be wise for me to have anymore children!)
Now onto when I went back to him yesterday to talk about my new scans. I haven't changed!!!! HURRAY!! My chiari herniation is still 7mm, he said that as of right now he sees no reason for surgery since my symptoms are still ones that I feel are livable. He did put me on another medication for pain, it is supposed to reduce pain and spinal pressure Indocin I am his test subject. I told him when I lay down on my stomach I feel like I am drowning. Not literally I can't breath drowning but that my head is filling with fluid and I feel like my brain, face, is sloshing around and I have to hurry and turn over. He said how long has this been happening? I told him years. Just something I have learned to live with. He said that was another spinal fluid pressure issue. See I love this man. All the other doctors have just blown me off!!
He also had a bunch of stuff tested in my blood, you know how much of my rx was in my system but I had told him I was super exhausted all the time. Come to find out my iron was an 18. I am now starting iron pills to see if that helps. I will have it retested in 3 months. So that was my visit and have I said I LOVE THIS GUY???
Thursday, December 20, 2012
Thursday, September 6, 2012
Chiari Carnival #7 Topic: How are you doing? Theme: Finally answering truthfully
The truth, the absolute truth... Here goes....
I like to say I am 100%, but since we are being truthful. That would be a lie. Most of the time I am really good. I mean, I am pain free a good 85% of the time. I always have a lingering headache that I have just learned to live with. I just don't let it get me down. It isn't worth taking anything for because I don't want to keep taking medicine and ruining my other body parts (you know important organs!)
Alot of the times I forget words, but people just think I am nuts or should have been born a blonde, I just let them think that. No sense tell them that is my brain being too big for my head causing me to look like an idiot, I really am smarter than I seem right now! I have a Masters degree! The worst is when I am teaching (yes I teach, in fact I am an adjunct professor!) and my mind is gone, and my students are staring at me and I know exactly what I want to say and I feel about 2 inches tall... UGH!! Stupid CHIARI!!
Do you know how many times just typing this I started typing and my fingers just kept going making up all sorts of gibberish. It is like I couldn't remember how to type. Oh and sneezing, which I just did, btw!!! TORTURE!!! My head feels like it is going to combust right there!
That is why I said I am 85% because really I am good but there are so many quirks that when listed separately are just quirks but living with them everyday are CHIARI!!!!
I like to say I am 100%, but since we are being truthful. That would be a lie. Most of the time I am really good. I mean, I am pain free a good 85% of the time. I always have a lingering headache that I have just learned to live with. I just don't let it get me down. It isn't worth taking anything for because I don't want to keep taking medicine and ruining my other body parts (you know important organs!)
Alot of the times I forget words, but people just think I am nuts or should have been born a blonde, I just let them think that. No sense tell them that is my brain being too big for my head causing me to look like an idiot, I really am smarter than I seem right now! I have a Masters degree! The worst is when I am teaching (yes I teach, in fact I am an adjunct professor!) and my mind is gone, and my students are staring at me and I know exactly what I want to say and I feel about 2 inches tall... UGH!! Stupid CHIARI!!
Do you know how many times just typing this I started typing and my fingers just kept going making up all sorts of gibberish. It is like I couldn't remember how to type. Oh and sneezing, which I just did, btw!!! TORTURE!!! My head feels like it is going to combust right there!
That is why I said I am 85% because really I am good but there are so many quirks that when listed separately are just quirks but living with them everyday are CHIARI!!!!
Sunday, July 29, 2012
Carnival #6- Chiari Comforts
Ok so you might have noticed that I flaked for the month of June. Such is life right! So here we are, it is now July and for the Chiari Carnival it is time to talk my Chiari Comforts!
I rely heavily on my drug regimen. I had been seeing a pain management specialist who finally got my pain under control. (But due to insurance problems I am now having to find a new dr and I am starting all over, I am just going to tell them straight up this is working, don't you DARE mess with this!!) Now don't get me wrong, I love a good massage, especially a hot stone... MMMM just typing that makes me want to schedule one!!
So here is what I take and it works for me, may not work for you though (that is my disclaimer!)
In the morning I take 2- 25mg of Topamax pills in the morning as well as 2mg of Zanaflex. In the evening I take 3- 25mg of Topamax as well as 4 mg of Zanaflex. This has basically rid me of constant pain. I do have headaches that will occasionally flare up and before Excedrin was taken off the market I could usually take 2-4 Excedrin Tension and be good. Now I have to take lots of Ibuprofen throughout the day and that barely makes a dent. I am just hoping Excedrin comes back soon!!
So there you have it, my comforts. I also take warm baths when my muscles feel super duper tense. I can't afford too much of the extravagant extras. So I have to make due!
I rely heavily on my drug regimen. I had been seeing a pain management specialist who finally got my pain under control. (But due to insurance problems I am now having to find a new dr and I am starting all over, I am just going to tell them straight up this is working, don't you DARE mess with this!!) Now don't get me wrong, I love a good massage, especially a hot stone... MMMM just typing that makes me want to schedule one!!
So here is what I take and it works for me, may not work for you though (that is my disclaimer!)
In the morning I take 2- 25mg of Topamax pills in the morning as well as 2mg of Zanaflex. In the evening I take 3- 25mg of Topamax as well as 4 mg of Zanaflex. This has basically rid me of constant pain. I do have headaches that will occasionally flare up and before Excedrin was taken off the market I could usually take 2-4 Excedrin Tension and be good. Now I have to take lots of Ibuprofen throughout the day and that barely makes a dent. I am just hoping Excedrin comes back soon!!
So there you have it, my comforts. I also take warm baths when my muscles feel super duper tense. I can't afford too much of the extravagant extras. So I have to make due!
Thursday, May 24, 2012
Carnival #4- "If my life were a movie."
First of all welcome to the Chiari Carnival!! I am so excited to be a part of such a great group of fellow Chiarians... Too bad we had to meet this way but so glad I am in such great company... But on to this months topic!!
If my life were a movie... HERE GOES! Grab your popcorn, Coke (whatever flavor your prefer, in Texas we call everything Coke,) you better be sitting in you favorite chair and have had your potty break because believe my life as a movie is nothing but DRAMA!!
I wish the story I was about to tell you I was making up but unfortunately I'm not.
It all started the day my oldest was born. He just turned 9 in December. All went well with the labor, the epidural seemed ok until the anistesiologist had to try 3 times to get it to go in my back. Finally relief from those awful contractions. Then a beautiful baby is born. But why won't this terrible headache go away?? The nurses kept calling it a spinal headache (something about a spinal fluid leak from the epidural) They needed to try a blood patch. Ok... Here I am 23 with my first baby, feeling like I am literally dying. A blood patch is where they take blood from your arm and then insert it in a catheter back into your back where the spinal fluid is leaking. They tried a number of times to get blood out of my arms. I was so dehydrated they couldn't get blood from my arms (plural), numerous attempts were made. I was black and blue up and down my arms. I felt like I was being tortured. You must lay totally still this whole time because you have piping in your spinal cord the whole time. Well this attempt was unsuccessful and they didn't want to try again while I was there. After this you must lay on your back for a number hours. Now remember I had just had a baby! This baby needed to be nursed, changed, held, loved. Try doing that flat on your back! They then suggested I just drink Mountain Dew...(while flat on my back!)
I am now being released from the hospital still with a raging headache... Told to take it easy the pain will ease up. Life resumes but the pain never truly eases up 100%. I knew from taht moment on that something was not right. 2 and 1/2 years later we move when I am 7 months pregnant from a one horse town to the suberbs of a metropolitan area and my 2nd son is born, this time no epidural complications he is born, no spinal leak, no excrutiating headaches. But extreme fatigue after he is born... I go to the dr, I am diagnosed with MONO... REALLY!! I have a 1 week old! What kind of luck do I have?? I get over that hurdle of a newborn and 2 year old and am still getting headaches. I just figure it is exhaustion... But other weird things start happening. My equalibrium is off. I run into walls, my fingers and toes tingle, they also turn completely white like a dead person when they are cold (terrible circulation).
In the fall of 2007 I tell my PCP about these weird symptoms, he says he wants to send me for an MRI. He says you usually find a zebra while looking for a horse. We were doing scans for MS and lo and behold Chiari was the diagnoses. He was such a smart man! In this same time frame, I have a terrible headache that causes me to pass out cold and break a tooth, luckily it wasn't my jaw! My mother in law also passes away from breast cancer. Talk about super stressful!!
This wonderful PCP who helped me passed away in December 2007 in a motorcycle accident and I cried because he was my angel! Without him I may never have gotten the help I needed! After he diagnosed me I went from neurosurgeon to neurosurgeon because I am adament to keep my head in tact, I finally found one that said surgery could wait until my symptoms finally lead to it.
I have also jumped from neurologist to neurologist because many just feel that my headaches are migraines which simply isn't true!! There is a huge difference and I just want them to understand! I finally found a Pain Management Dr who had been great. But in 2009 I was fired from job and lost my insurance. Let me tell you not having insurance stinks when you have an illness. Many doctors won't see you! Well when you need medication what are you supposed to do? My medication costed $500 a month for almost a year. I was on unemployment and at times choosing whether to feed my family or buying my meds. My husbands had no job at the time either! We were literally broke! But going without medication is like a death sentence. I would have been bedridden and since I was the one with 3 jobs, I had to have the medication to make the money to keep our family going.
Things turned around but when my husband got a new job the company's insurance wouldn't cover preexisiteing conditions for 1 year! That is terrible!! Once again my new PCP covered for me and wrote prescriptions but he said you have got to go back to the specialist, but now the specialist isn't covered under the new insurance and here I am in 2012 back at square one about to have to start interviewing nuerologists all over again! Being sick really stinks. I told you my life was a movie....
If my life were a movie... HERE GOES! Grab your popcorn, Coke (whatever flavor your prefer, in Texas we call everything Coke,) you better be sitting in you favorite chair and have had your potty break because believe my life as a movie is nothing but DRAMA!!
I wish the story I was about to tell you I was making up but unfortunately I'm not.
It all started the day my oldest was born. He just turned 9 in December. All went well with the labor, the epidural seemed ok until the anistesiologist had to try 3 times to get it to go in my back. Finally relief from those awful contractions. Then a beautiful baby is born. But why won't this terrible headache go away?? The nurses kept calling it a spinal headache (something about a spinal fluid leak from the epidural) They needed to try a blood patch. Ok... Here I am 23 with my first baby, feeling like I am literally dying. A blood patch is where they take blood from your arm and then insert it in a catheter back into your back where the spinal fluid is leaking. They tried a number of times to get blood out of my arms. I was so dehydrated they couldn't get blood from my arms (plural), numerous attempts were made. I was black and blue up and down my arms. I felt like I was being tortured. You must lay totally still this whole time because you have piping in your spinal cord the whole time. Well this attempt was unsuccessful and they didn't want to try again while I was there. After this you must lay on your back for a number hours. Now remember I had just had a baby! This baby needed to be nursed, changed, held, loved. Try doing that flat on your back! They then suggested I just drink Mountain Dew...(while flat on my back!)
I am now being released from the hospital still with a raging headache... Told to take it easy the pain will ease up. Life resumes but the pain never truly eases up 100%. I knew from taht moment on that something was not right. 2 and 1/2 years later we move when I am 7 months pregnant from a one horse town to the suberbs of a metropolitan area and my 2nd son is born, this time no epidural complications he is born, no spinal leak, no excrutiating headaches. But extreme fatigue after he is born... I go to the dr, I am diagnosed with MONO... REALLY!! I have a 1 week old! What kind of luck do I have?? I get over that hurdle of a newborn and 2 year old and am still getting headaches. I just figure it is exhaustion... But other weird things start happening. My equalibrium is off. I run into walls, my fingers and toes tingle, they also turn completely white like a dead person when they are cold (terrible circulation).
In the fall of 2007 I tell my PCP about these weird symptoms, he says he wants to send me for an MRI. He says you usually find a zebra while looking for a horse. We were doing scans for MS and lo and behold Chiari was the diagnoses. He was such a smart man! In this same time frame, I have a terrible headache that causes me to pass out cold and break a tooth, luckily it wasn't my jaw! My mother in law also passes away from breast cancer. Talk about super stressful!!
This wonderful PCP who helped me passed away in December 2007 in a motorcycle accident and I cried because he was my angel! Without him I may never have gotten the help I needed! After he diagnosed me I went from neurosurgeon to neurosurgeon because I am adament to keep my head in tact, I finally found one that said surgery could wait until my symptoms finally lead to it.
I have also jumped from neurologist to neurologist because many just feel that my headaches are migraines which simply isn't true!! There is a huge difference and I just want them to understand! I finally found a Pain Management Dr who had been great. But in 2009 I was fired from job and lost my insurance. Let me tell you not having insurance stinks when you have an illness. Many doctors won't see you! Well when you need medication what are you supposed to do? My medication costed $500 a month for almost a year. I was on unemployment and at times choosing whether to feed my family or buying my meds. My husbands had no job at the time either! We were literally broke! But going without medication is like a death sentence. I would have been bedridden and since I was the one with 3 jobs, I had to have the medication to make the money to keep our family going.
Things turned around but when my husband got a new job the company's insurance wouldn't cover preexisiteing conditions for 1 year! That is terrible!! Once again my new PCP covered for me and wrote prescriptions but he said you have got to go back to the specialist, but now the specialist isn't covered under the new insurance and here I am in 2012 back at square one about to have to start interviewing nuerologists all over again! Being sick really stinks. I told you my life was a movie....
Tuesday, May 22, 2012
What a mess!!
I am so bummed. My husband got a new job a year ago and one of the insurance rules was no preexisting conditions were covered for a year. Well I have been flying under the radar with my PCP but he has said I need to go back to the other dr. Well guess what they aren't covered!! I get to start this rigamaroo all over!! Yuck!! So now I have to go and see an all new dr again... What a mess!!! And who knows how long it will be until I can even get it in....
Friday, January 20, 2012
Such helpful news for me!
I hope this helps someone out there as much as it helps me! I can't go and see this dr until my new insurance will pay for preexisting conditions. That is in April but as soon as it does I am scheduling an appointment with this dr. Because thanks to this article I now know what all my crazy dizzy/fainting feeling are!!
The Heartbeat Clinic
The Heartbeat Clinic
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