Feeling lopsided.....confused
Posted , 6 users are following.
I was recently diagnosed with Chiari Malformation I with 6.8 mms tonsils. I can't even begin to explain how it all started because I am still in shock to this day. I have been seeing my primary doctor for 10 + years complaining about stomach pain, back pain, pain in the back of my head, sensitivity to light, pressure in my eyes, weakness, tired all the time, memory problems, the symptoms kept getting bigger and I worked through the pain, and I just sucked it up. I told myself I can get use to it. I was working long hours at the office and would continue to work from home. I had a lot of pressure at work. Actually my entire office was under al it of pressure. My headaches were getting worse and I kept taking Motrin for the pain. On 08/11/16 I was at my office talking to a manager and my co worker brought to my attention that I had slurred speech and my right face was drooping. I continued to push on with work and my symptoms got worse. I got to the point where I could not stand up or speak. I felt as if the air was being cut off. I was taken to the nearest hospital and admitted to the hospital. The ER doctor was treated me for a stroke. My blood pressure was normal, EKG was normal, then he has me do some exercises to see if I could move my head. I was asked to move my head up and then move my head towards my chest when all of a sudden I had a siezure. I was given a anti siezure shot and morphine shot. After that I was taken to the radiology dept.to get a CT with contrast and without contrast. After the CT, the doctor was asking me a series of questions but I had a hard time responding. I knew what I wanted to say but I couldn't. Once the CT results came back, the ER doctor said good news, no sign of a stroke, but there is something questionable that you will need further testing. My husband asked for more specifics and all the doctor said was it was congenital. So I followed up with my primary doctor and she ordered and MRI which confirmed my diagnosis which has been reviewed by a Neurologist and Neurosurgeon. The Neurologist I met with recently took his time with me to go over my MRI. Apparently there is a achranoid cyst and there is increased CSF space over the bilateral frontoparetal lobes
and the Neurologist did confirm I have Chiari Malformation 1. I'm still waiting to see the Neurosurgeon. I don't know how I feel about having surgery. I've been doing a lot of research and most of the results are not good. I am only 39. I am worried about a lot things. My life is not the same. Since the visit to the emergency, I can't bend over without collapsing, I can't drive because I have a stiff neck, my vision sucks, my memory is not the same, I still have slurred speech, I stumble or walk like I am drunk, sometimes I have ringing in my right ear, the back side of the right side of my head aches all the time. I take Topomax for the pain and Imetrex if I'm in too much of pain to bare. I take Valium to help me sleep at night. I keep asking how come this is happening. If I was born with I this condition why did it take so long to diagnose and if I did something to make my symptoms worse then how was I suppose to know that I was not suppose to take on so much stress. I have so many questions. I'm really frustrated and especially finding out that there aren't many doctors and Neurosurgeons that specialize in Chiari in my area. I also want to meantion that it breaks my heart that there is not a huge awareness about this diseases. There needs to be more awareness and we need more doctors to know about this condition. We need our future doctors who want to specialize in diseases of the brain to find a better or more advanced surgery method to fix/correct Chiarai.
0 likes, 20 replies
Linleel Evella4
Posted
It sucks doesn't it? I like to blame every disease/condition I have ever had on Chiari!!! It's also good to know that it's not my fault I'm clutzy or forgetful!! It's all in my head!! I found the "drunk walk" particularly tiresome since I got accosted by a policeman on my way to the bathroom during a Pacers game. He then escorted me there. It was actually sweet! The hardest thing for me is the zombie stupor! I feel like me head is encased in cotton balls.
I had surgery June 2 after being diagnosed in Nov, 2015. I was actually pretty happy to finally have a reason for all my symptoms! I did really well post-surgery, apart from being nauseous from the painkiller. Was getting strength back and planning ahead- then I got back some symptoms. So I've been trying to find out what is going on.
Unfortunately, Chiari Is not well known or understood. And there aren't many treatments for it apart from surgery. Doctor will test for every other disease or disorder. I had a whole slew of tests before I finally got an answer. Worst thing is being exhausted all the time! And my hubby is struggling with being supportive when he is really annoyed at me for always being sick.
Best thing to do is research everything so you know what the doctor is talking about- get copies of your MRI and study it. Be relentless in pestering your doctor, nurse, PA, etc.
HANG IN THERE!!
Evella4 Linleel
Posted
Thank you.
I am keeping track of all my records and I have copies of my MRIs. Still waiting to get a CINE MRI done.
Everyday my symptoms vary. Sometimes my neck hurts and it feels like it's being squeezed and I can't even talk. I described that to my husband that today because I was actually holding my neck. Or sometimes I feel like my head is being squeezed.
I would like to share with you that the other day I drove to the store to buy food and I was in a lot of pain and could barely move my neck. Luckily I have a back up camera, as I was backing out of the parking lot, I was taking my time and being extra cautious, when at the corner of my eye I see a man backing into my car. I stopped and honked at him. He rolled his window down and yelled at me and said he did not have time to wait for me to back out and that it should not take me a long time to back out of a parking space. I couldn't say anything back. I felt as if my vocal cords were cut off. My heart broke and I just cried. I pulled back into the parking space and turned off the car and called my husband. I have not drove since then. 😔
Linleel Evella4
Posted
People are soooo rude!!! Next time just keep backing out!! Don't let some jerk make you feel bad!!!
Are you taking any meds for neck pain? Hopefully you can in to get decompression asap! When you get to that point, give us a holler- I have details on surgery. Other than that there isn't any treatment.
Take care!!!
Linleel Evella4
Posted
It is now 4:10 am I'm not sleeping! (I have sleep apnea- another gift from Chiari). Just remembered to tell you: post surgery my vision is fabulous!! No more wicked sensitivity to light and I found my uber/dark glasses too dark!! Yeah!! Also no more disorientation whenever I go out to the store. I'm working on going walking every day with my pup- she drags me along. If I can get past the need to sleep every half hour, that will be great. (I'm 57, by the way).
Hoping to cheer you up a bit. Do you do any crafts? Knitting, crocheting, painting- that you can do while you're in your recliner? That really helps take your mind off things. Also, get yourself a nice squishy pillow to put behind your neck and a "reacher" so if you drop something you can use it to pick up. They have them on Amazon. Also, my GP ordered me up 800mg Naproxin Sodium for pain and also Hydrocodone- I had a good supply left for after surgery. My GP is much better at ordering drugs for me as my Neurologist and NS were not responsive!! And she has an online "MyChart" system to communicate with to make it easier to get in touch.
When is your Cine MRI scheduled? Hang in there and don't let anymore caustic inhumane idiots get you down!!!!
Kerenza Evella4
Posted
Hello :-)
I can't really say much to help, but just wanted to say you're not alone! Chiari absolutely sucks, and those of us with it completely understand what you're going through. Like you, I went along in my life perfectly OK until it suddenly hit in my 30s and it was a shock! One day I was running on a treadmill, and then BAM! Chiari raised its ugly head!
I don't have any great advice or even really know what to say, (Linleel is always brilliant at responding and usually manages to say everything I want to, but much more eloquently than me!!) but just know there is support put there and it does get easier. OK, so physically things might be hard but you start to learn to accept and deal with it, and mental outlook is really important.
Join some Facebook groups... You'll find a wealth of info and support there.
Wishing you all the best :-)
Linleel Kerenza
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shadow123 Evella4
Posted
Hi, I sorry for what going on with you. I had my surgery in May and I feel I am getting better every day. At least that what I tell myself. I still have headaches to the back of my head and neck. I still get daily headaches to my left eye. My memory still isn't what it use to be. I try not to complain or say to much to people about it, Like you said they don't know what to do or say, they want to be supportive and helpful but they get tired of the complaining and lack of energy that the headaches gives you. It just drains your energy. Since the surgery, my energy has improved some, I try to make the effort to get up and make the most of each day. I take my dog for a walk or work in the yard, or just do things around the house. Its not easy every day, but I still try, I miss my old life, the happy me, the outgoing me, I know she is in there somewhere. Try to make a list of the questions you might have, any concerns to take with you to your MD, Then make another list of the things you used to do before this all began. I have my list and try to do at least a couple things from it each week. Try to stay positive is hard when your in pain, it drains your energy but it help to have something to take your mind off of it, even if its just for a little while. I know I'm probably not that helpful, but like the others, we all wish you the best. If you need to vent your frustrations, you have people here that understand. Hang in there.
Evella4 shadow123
Posted
Hi Shadow123,
Thank you for your response. You are very encouraging. i hope you don't mind me asking you a question about your Chiari. What kind of symptoms did you have? How big were your tonsils? How long did it take until you finally had surgery? I ask all these questions because I am worried about my life. Everything is on hold. I can't work and I can't think of another month being home. I am getting impatient about the process and I don't understand why the medical insdustry drags their feet. We pay so much money in health insurance and everything is a waiting process and ordering unnessessary tests. I'm venting. I want to do something about this! I want to speak out and ask other sufferers like us suffering with Chiari that we are out there and we are on the back burner because of ignorance. I am venting. You said I can vent.
shadow123 Evella4
Posted
My symptoms start inJan 2015, I wasn't feeling well and when I woke up from my nap I was kind of stumbling down the hall way, I couldn't see out of my left eye, I had slurred speech and drooping in left side face. I thought of a stroke. My husband took me to the hospital and they did all the tests, MrI and labs, CT scan. I was admitted into the hospital. After some medicine, I seemed better and they sent me home saying they ruled very thing serious out and said they thought it was a migraine. Never had one in my life. Sent me to a neurolgist he gave me some medicine for when the headaches get bad. From the day this all happen I had bad headaches. Always on the left side, starts to get bad when I hurt more in my left eye. then goes toward the temple and behind my ear and back of head. I saw two different neurologists, the second MD tried differnt meds, I had point injection shots (steroids) I had botox shots - 31 shots ( across the forehead, temples, behid ear, back lower part of head and into the neck and shoulders). He did this on three different occassion about every 3 months. It help so I would have the severe headaches ( with the stroke like symtoms). But the headaches didn' go away. He did another MRI and was able to see the cord pressing into the cerebellum. He sent me to Dr. Heffez In Feb. 2016, for a surgery consult. He asked me all kinds of questions, spent almost half hour, recommended surgery, said it was the chairi surgery. He showed me the MRI I'm not sure the size tonsils. I saw him in Feb and had my surgery May 9th. I know your frustrations, from what I read there are lots of symptoms so it makes it hard for the MDs to diagnose it. I still have the bad headaches( with the stroke like symptoms) it has happen 2 times since the surgery. Called the MD said it must be the complex mirgraine you get. I don't understand sometimes, because I thought that what the chairi was causing. I am sorry for going on so, see why I don't talk about it much, It gets me frustrated sometimes. I am a positive person, and I am hopeful this will go away with time. Sorry again I guess it was my turn to vent. My advise to keep asking the MDs if one doesn't help tell them I want to see some one else. I wish you the best.
Evella4 shadow123
Posted
Hello,
Thank you for sharing your symptoms and challenges. After I read your comment, your symptoms were similar like what I have been experiencing. I do wonder if we did something to trigger our Chiari to be symptomatic. I never had migraines and when I was in the ER being treated for a stroke and once they realized I didn't have a stroke I was told by the ER doctor that I had Atypical Migraine and that I needed to follow up with my GP right away. After that it was a series of tests and now it's official....Chiari Malformation 1, Tonsils 6.8 mm. And who knows if they are bigger now. I'm in more pain than I was before. My neck is what hurts the most. Then the radiating pain in the right ear. I asked the Neuro how can I have this problem all of a sudden if I have been fine all my life? The Neuro said it can be a number of things like stress. Maybe I had too much stress and my Brain couldn't take too much stress
b2wc97455 shadow123
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Jenaa Evella4
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* big sigh*
I was sent to haematology because of my level of tiredness before I was diagnosed with the chiari. Bloods were all normal except for elevated white blood counts and slightly anaemia for which I have had an iron infusion. In my review I told the consulate that I've been diagnosed with chiari after she suggested maybe I was depressed and that's why I was so tired. She said what is that. So I said an Arnold chiari type 1 malformation. She looked blanked and then I had to give her a whole talk about it. I know it's not her specialists but to not even know of a term is a bit behind my understanding.
From reading the threads it feels it's the same long struggle for everyone.
Evella4 Jenaa
Posted
I'm sorry for the late reply. I've been seeing specialists and my symptoms have worsen. I can't be on my own anymore. My husband is considering hospital care because it's too much. I was going to get the Chiari Decompression surgery but now the surgeon wants to rule out something else before he I have a drastic surgery on my cranium. Turns out I have multiple things going on with my brain. The MRI shows excessive fluid on top of my brain which is causing the Chiari 1 symptoms and pushing the tonsils into my brainstem. The surgeon is thinking that is the cause and if it is I will need a different surgery. I am trying to be strong but I really am running out of stength. I am in the mercy of God and my doctors. I hope I can be the go getter I use to be. Positive, smiling, and always making people smile.
Linleel Jenaa
Posted
It is sad, but seems to be the norm everywhere. Neuro doctors know basically nothing about Chiari. I had my surgery June 2. Had my follow up August 10 with a diffferent doctor as my doctor had gone on a leave of absence. Two weeks later I started getting symptoms back. After wrangling with the new doctor, physician assistant, nurse, secretary, etc. I am now seeing a third doctor because second one doesn't know much about Chiari!!!!! WHY DO THEY MAKE THE BIG BUCKS when I have to tell them what is going on with the brain?? Anyway, now you have a diagnosis, get a Cine MRI to see if there is any cerebral spinal fluid blockage. That should tell you whether you need decompression surgery or not. If you don't have surgery, you basically live with the symptoms and take pain pills or some other pills to deal with the symptoms. Even if you have surgery, symptoms may return.. ... Good Luck!!
Evella4 Linleel
Posted
Hi Linleel,
My husband and in mentioned about a CINE MRI and we were told I don't need one. The Neuro seurgeon is is Chiari surgeries for 30 years and is the top Neoro surgeon in northern CA. I saw my GP on Friday and I had a severe body spasam ( siezure). My doctor freaked out and new there is something seriously something wrong and is now referring me to Stanford University Medical. My GP is frustrated that it's taking this long to figure out what is causing me to have all these neurological issues.
Jenaa Evella4
Posted
Stay strong. I hope they figure it out for you soon. I'm being referred to the neurosurgeon now so just gotta wait and see.
How old are you if you don't mind me asking?
Jenaa Linleel
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There's no hope is there?😥😪😫
Evella4 Jenaa
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Evella4 Jenaa
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Linleel Jenaa
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There is no cure. BUT, NEVER GIVE UP!!! We CHIARI WARRIORS will keep FIGHTING this endlessly!! We have to remember one major point!! We all have bigger brains than regular people!! If I'm stuck with this stupid disorder, I'm going down fighting!
1) Get handicapped parking pass so I can park closer to places so I don't get so tired from walking to where I'm going. (I called my Dr.'s Office re: this and haven't heard back yet, however will keep on them).
2) Drive a small amount. Use uber if can't drive.
3) Apply for disability.
4) May have to get a "walking stick" to help with balance. Dr. already prescribed me some patches for nausea due to dizziness.
5) Find something else to think about so not so obsessed with this stupid "Brain Thang." I started up doing painting and pastels again and working on my website. Thankfully all my kids are grown and moved out. And I work from home, when I used to work. 6) Adjust expectations. Don't take on more projects as don't know if I'll be able to do them. Take things slower.
7) Shop online. Easier and no need to drive. Amazon Prime!!