I am so sorry for being MIA the past two weeks. As most of you know, with Chiari, everyday is unpredictable. My pain has been uncontrollable the past few weeks, and the past few days have been the worst. Most of my time has been stuck in bed. I wanted to get on here and share Teresa’s Story with you all for Chiari Awareness Month. I hope to be up and writing again soon.
I never thought my life would change so much. I always thought I was different even as a kid. I felt labeled as lazy and faking it to get out of whatever. It seems like you live with a headache every day, it’s just the intensity changes daily. I thought I was crazy; living at the doctors all the time, being told all your test came out fine, we can’t find anything wrong . Gosh if I had a nickel for every time I heard those words! For over twenty years blood test, ct scans, MRI , X-rays , this pill or that pill, do you take the blue one today or the red one, and we can’t find anything wrong.
I was working at telemarketing, a job that is very hard and takes a toll on you after a while. The way people once again label you, my hands and shoulders were going numb and burning (this was in the summer of 2010) I thought I had carpel tunnel because of my job and the way my hands were being affected. I got sent to a neurologist neurosurgeon who did an EEG and MRI. That was the beginning of my nightmare. I had Chiari, something I never ever heard of or could say. Today that’s all changed.
I wish I knew everything then that I know now. I don’t think I’d ever have surgery. My first surgery for decompression was August of 2010, they removed the bones out of my neck , three months hadn’t even passed and I wasn’t feeling any better, in fact, I actually worse. So they did another MRI and decided a piece of my skull needed to be removed. Why they didn’t do this the first time I have no clue but anyways only days apart from being a year apart for my second decompression surgery August 2011.
This surgery was harder than the first. My blood pressure had gone so crazy high for days and they had to keep giving me shots to bring it down, the headaches? OMG! They didn’t know if surgery or my blood pressure was increasing my pain but it’s like I became a test monkey and I’d watch that morphine pain pump for time to pass to push that button. I don’t think I even slept; the pain was so horrible and I just wanted those meds. I spent like six days in the hospital. My boyfriend whom I had basically just met was so awesome always there by my side. This was all totally new for him. Living in ER’s and doctors offices became our life. When it came time to get my stitches out I was so ready, the nurse began taking them out and when she took this one stitch out I swear it felt like my brain dropped. I got a sick “I’m going to blackout” feeling and she said that’s normal.
Emmanuel ( boyfriend ) and I went out to eat to celebrate the stitches being removed. As we were sitting waiting on our food I got really sick to my tummy and had to go to the restroom , and I wondered what was wrong . It was too late to call the doctor so I kind of blew it off for a couple of days. My head started to increasingly hurt really bad. I would lay flat and it seemed to help. I think we had to call an ambulance about four different times if not more to take me back to the ER cause I could not sit up , the pain was unbearable sitting up. I think they thought I was in there for drugs because the first two or three times basically all they did was dope me up and send me home, the next time we went I was so pissed and refused to leave until they did more tests and figure something out. The doctor came in the room and told me he was going to have to do a spinal tap , I’m thinking he said this to scare me. He doesn’t believe something is wrong, my head hurt so bad I didn’t even know they had already done the tap. I had a CSF leak , apparently one of the stitches had come out of my Dura patch and also I was told I had a brain aneurysm which needed immediate attention.
So in September 2011 they are opening my brain back up to repair that leak. The beginning of my total hell started that day. After a few days and stuff started wearing off, the right side of my face, head , ear and shoulder felt like the sun was three inches away from me and it was constant. In October I’m back in the hospital having my aneurysm operated on (the only way they can reach it is through the groin area), they said if it bust I wouldn’t even make it to the hospital. Even if I was in the hospital my chances were I wouldn’t make it.
Well I’ve had three surgeries on it so far to coil and stent it. It keeps growing my last surgery on it was April 2, 2014. I go again in October to see how things are going. So for this horrible burning pain I ended up having to take things in my own hands cause it got to where my doctor that did my Chiari surgeries would not see me anymore stating the burning pain in my skull and face wasn’t surgery related. I lived in the ER for almost a year until I found another doctor. They did nerve blocks. My back went out during this, so my new doctor did surgery to try and fix that problem. It helped a lot but now I’m starting to have that pain again. That surgery was November, 2012. I had pins put in both sides of my pelvic area for sciatica. I went through so many different drugs trying to kill the pain, nerve blocks, burning of nerves, nothing helped until I got sent to another doctor who suggested an occipital lumbar nerve stimulator. I have had so many problems with the stimulator but will take this any day over that burning pain in my head and face. They think I’m rejecting it. I had it permanently put in on December 9, 2013. It seems the past four years have been a trip to hell. I feel like a burden, I hate my life and feel so sorry for my boyfriend. Life isn’t anything like I was thinking it would be for us. If this pain would leave and my body could heal from monthly surgeries maybe he and I could experience Utopia.
I find it strange how after you get some sort of really serious illness you own it, live it, breathe it, what it’s all about. I’ve become such an advocate for Chiari and try to talk to anyone I can about it. I have educated so many doctors and others in the medical profession. I’ve started groups and I’m like a sponge when it comes to learning anything about Chiari. I find myself trying to find away to make me feel as though my life hasn’t become a complete waste. I’m trying to make a change. I’ve become so compassionate for others and it kills me to see anyone in pain because I so know how they feel. Chiari changes your life so much, it’s like one day your this person; next thing you know you have surgery and that person died and another was born on that operating table, a person struggling to find out what happened, where I went. I for one know life will never be the same and wonder will I ever enjoy it again. Will the pain ever cease? The pain is like voices in your head so loud just want it to be calm.
Thank you Teresa for taking the time to share your story.
Stay Positive dear readers!
I have not been doing well the past few days. My pain has been bad, and I haven’t been sleeping. My Chiari friend Jen Babcock has been kind enough to share her story with us!
I was born and raised a farm girl and a tomboy. I have always been physically active, played sports, loved life and lived it to the fullest. I have never been one to speak up for myself or want to tell my story until now.
My journey with Chiari began back in 2001, working as a rehabilitation assistant on a weekend day helping out the physical therapist on duty. We were working with an elderly patient who had gait (walking) difficulties. As we were walking the patient along the parallel bars, she lost her balance and the therapist and I went to catch her and in the process I injured my neck.
I went through physical therapy myself, injections in my neck, pain medication, depression medications (because they said I was depressed and not in pain), multiple evaluations with multiple doctors and then finally, an MRI was ordered. The results were that I had Chiari I Malformation. My family doctor referred me to the University of Wisconsin, Madison, where I saw Dr. Iskandar. He is a neurosurgeon at UW who had supposedly specialized in Chiari.
It was suggested by Dr. Iskandar that I have decompression surgery. Obviously, if my neurosurgeon is suggesting this, I am going to believe that this is what I am supposed to do. I was released after four days in the hospital only to have to go back two days later with aseptic meningitis. I spent another four days in the hospital. After two follow-ups with Dr. Iskandar, another MRI, an EEG, physical therapy, chiropractics, more medication, and a year of time, I still wasn’t completely normal, but was told that this is my new normal.
I learned to accept the daily neck pain, limited function, numbness and tingling down my arms and legs, etc, and tried to move on with my life best I could. I couldn’t work as much as I used to, but I had to work, I had two small children to raise on my own. I had a full-time job and a college education to finish, so I didn’t use pain medication. I just took over-the-counter medication.
With determination and a go-get‘em attitude, I was successful. I did return to Dr. Iskandar for follow-up at the five and seven year mark. (The seven year follow up was actually with my son, who had been diagnosed with Chiari I malformation as well.) I was told that everything looked fine and that I must still be depressed. I needed to go see my family doctor to start on antidepressants again.
I went on with my life having daily, chronic pain, but I still had to do what I needed to do to survive. I continued to have evaluations for my symptoms. I was told that I had nothing wrong with me. In the summer of 2012 there was an unfortunate accident where someone was thrown off of my boat onto the top of my head, and my symptoms were exacerbated severely by the injury.
I went for evaluations, started my therapy again, increased my over-the-counter medications, and had another MRI. The results showed that I had herniated discs at the C5 through C7 level. The doctor told me I needed to have fusion surgery. Since I was seeing a new neurosurgeon I believed they were the expert, and that I needed to go ahead with the fusion surgery to get relief of my symptoms.
After the surgery in November 2012, my symptoms were worse than before, and have been since. I have seen the neurosurgeon who did my fusion surgery, who told me that it may just take more time to heal. I saw a neurologist in Marshfield who told me there is nothing wrong with me and that it was depression and stress causing my symptoms. My primary care physician has told me that there was nothing that I could do other than the home therapies that I had been doing, and the over-the-counter medications.
With further research on my own into Chiari, and with the support groups on Facebook that I am a part of, I decided to look into the Wisconsin Chiari Center. As part of one of my follow-up examinations, I asked my primary care physician for a referral to this facility in Milwaukee. After my appointment with Dr. Heffez, two hours worth of MRIs, a BAER test, multiple laboratory tests, and neurological tests conducted by the physician, it was determined that my first Chiari surgeon had in adequately performed my surgery back in 2001. My Chiari was never fixed.
The was the answer I needed verifying that my feelings and discussions with all of these other doctors were correct. I had felt that it was my Chiari that was causing my symptoms, but was constantly told that it was not the case. Dr. Heffez informed me that I would need to have my decompression done again.He would have to go in and fix all of the things Dr. Iskandar did wrong.
I found out I also have Tethered Cord Syndrome. It is a condition that is common with Chiari patients. It is something that should have been discovered had the other doctors listened to me when I asked for a full spine MRI.
I will now be going in for another surgery on September 1st, 2015. Dr. Heffez will be redoing my graft, reopening the dura into the cerebrum to make more room as I have compromised cerebrospinal flow, and he is going to place a plate into the lower part of my skull because the first surgeon took out too much.
The reason I am telling my story is so that anyone and everyone who is reading this will listen to their bodies. If you feel as though you are being told something that you do not agree with, stand up for yourself! That is something I did not do enough. Only you know how you are feeling. Even though I did tell my doctors I was not feeling right, they made me feel like I was crazy even though they really had no clue what I was going through. They had no clue about what Chiari malformations truly is.
I have been suffering for 14 years. I am hoping and praying, as are my family, that this second surgery will help me so I can live a somewhat normal life. The last six months to a year has been extremely limited. I am no longer able to lift any weight or enjoy the things I used to because of the extreme amounts of pain I am in, the daily headaches, and the dizziness I feel all of the time.
I am hoping my story will help someone with our condition. Take care of yourself, and stand up for yourself. Use your voice. Don’t let one person’s word be the last word.
Thank you for taking the time to read my story and letting my voice be heard.
Thank you Jen for sharing your story with us. Every story shared helps us be better advocates.
Stay Positive dear readers!
Too many times, people with an unknown condition face so much ignorance when we just want some help. A fellow Chiarian asked if I would share her story to help others understand what we go though.
Aylar Mousavi says,
I am writing this because no one should have to go through what I did at St. Michael’s hospital. I went to the ER because I had been vomiting for six weeks now. A medical student comes in and asks several questions, if I’m pregnant, and so on. He says we will perform some blood tests and go from there. He said in a weird, sarcastic tone that he will also be doing a pregnancy test as if I’m lying about not being pregnant.
I say sure. I wait another hour and Dr. Joel Lockwood comes into my room with my results and mentions nothing about my blood tests, He asks instead why I came into the ER. I told him because I had been vomiting for sis weeks now. I asked him about my blood test results, which he says are perfect. I asked him, “Am I pregnant?” He said no, and asked again why did I come to the ER.
Again, I tell him, I called a private clinic in Toronto. I explained my symptoms to them and they said I’m acute and shouldn’t wait for an appointment. I needed to go straight to the ER. Dr. Lockwood then said “You probably spoke to the secretary there. That’s why they said go to the ER.” I ask him if we should do a Cat Scan to rule out cancer. No, he says. It’s too much radiation, and you should ask your Gastrointerologist to perform a scope.
I asked him what if it’s from my Chiari, which I had to have brain surgery for. He told me, “From your symptoms, it’s not from your brain. We will do an ultra sound of your stomach area.” I demanded a better answer and he just left the room. I saw a nurse outside my room, and I tell her that my symptoms can be from Chiari since my brain tissue is laying low and my spinal cord is being compressed. She said “Not possible.”
I ask what she means by “not possible” and if she knows what Chiari Malformation is. The nurse laughed and said “I do know. Your brain cannot be herniated.” I ask for Dr. Lockwood, and she said, “I will ask him to come see you.” She then left the room, still laughing from what I said regarding my Chiari.
Someone else comes in, and says “We need this room. Go wait in the waiting area for your ultra sound.” I go to the waiting area and see Dr. Lockwood. I explained that I had an upright MRI recently in Los Angeles, which stated my brain is laying low, down to my C1 vertebra, and I have Craniocervical Stenosis. Dr. Lockwood said, “That’s not possible. You don’t have a herniated brain.”
I asked him if he knew what Chiari Malformation was, and he said “Yes, something to do with C1 and C2 vertebra.” No, I said. It’s a herniation of the cerebellum into the spinal column. He said, “Are you quizzing me?” I said, “No, I’m not. I am asking if you know anything about my condition.” He said, ” You don’t have a herniated brain or cerebellum. You would be dead, or not be able to walk.” I said, “Are you kidding me?! Take out this IV. You clearly don’t know anything about my condition, and I do not trust you.”
He walks me to the nurse where many other patients are sitting, and says sarcastically, “Take out her IV. She thinks her brain is herniated,” and laughs out loud. The nurse took out my IV and I asked where I could change into my own clothes. She told me to go to the washroom.
I change my clothes and ask a nurse what the doctors name was (Dr. Joel Lockwood). As I’m leaving, I tell Dr. Lockwood he should go back to medical school, research Chiari Malformation, and try to educate himself. He starts to laugh and tells everyone around him again that (laughing) “She thinks she has a herniated brain.” Another nurse comes towards me in an aggressive manor, and tells me that was NO way to speak to the staff.
I said, “What are you going to do?” She said. ” Walk you out.” I said “No, thank you. I can walk myself out.
I am asking you to please share my story. So many doctors and other medical staff are ignorant of chiari malformation. Many people with chiari die because they’re dismissed my medical personnel. I am extremely frustrated and in absolute disbelief in the way I was treated. No one should have to go through what I did.
Aylar, thank you for taking the time to share your story.
I have been having a few rough days, but I wanted to bring you the story of John and Chrissie. They are a lovely couple from Australia, and were kind enough to allow me to share their story with you today.
John and I were married in 2005 and we have two children, aged 18 and 14. We come from Shepparton, a country town in Victoria, Australia. John is under the neurology team at the Alfred hospital in Melbourne, and we’ve been lucky enough to come across doctors that have a little bit of knowledge about this illness.
Our battle (mainly John’s) with Arnold Chiari Malformation started around this time 10 years ago. John was diagnosed at the end of May 2005 and had his first decompression surgery August 9, 2005. He had suffered from headaches for two years prior to his surgery, and these were gradually getting worse, more intense and would travel from the back of his head around to the top. His vision was getting worse, his balance was so bad that you would think he was drunk all the time.
The first decompression surgery seemed to improve some of his symptoms, except the headaches. (Those have never gone away, just been made bearable with a concoction of drugs) After spending six weeks in rehab learning to walk again, John’s condition did improve, but not to the point he could return to work. He was pensioned (retired) at 30 years old.
In 2008, John had a second decompression surgery. His symptoms had returned with a vengeance. His headaches were getting more intense, his vision was blurry, he was sensitive to loud noise, his hand eye coordination was getting worse, and he walked and spoke as if he had been drinking all day. The scariest part of all, however, was John coughing and choking to the point he would black out.
He improved slightly after the second decompression surgery, but then he developed Hydrocephalus, and had to have a *VP shunt (Ventriculoperitoneal Shunt) put in. The shunt collapsed and had to be replaced. It collapsed again, so the doctors decided on a *LP shunt (Lumbar-peritoneal shunt), but one wasn’t draining enough. They put a 2nd shunt in and that was draining too much. He then had a valve put in one shunt so the doctor could control how much CSF fluid was draining. They finally got it right, only for John to have a bad fall and his shunt popped out. It took four months in and out of hospitals and another seven surgeries for this to be rectified.
10 years after John went in for his first surgery, we had expected John would do a bit of rehab, and be back at work in six months. Three weeks ago, John started needing to be in a wheelchair, except for when he is at home. We now have the car equipped with a trailer to get him about with his wheel chair.
John has had a lot of falls recently and will continue to do so. His body aches all the time. His hands go numb. He loses feeling in his legs. His speech becomes nearly inaudible. His vision is getting worse. He drools without realizing it. His appetite is nearly next to nothing, and when he does eat, it intensifies his headaches and makes him feel nauseated. His short term memory is shocking. He takes at least 20 tablets (pills) a day as well as painkillers in between.
The weather also impacts John, and makes it hard to have good days. His pain is taking a toll on him. He is so sick of hurting, and as his partner, I struggle every day. Although I’ve been with John since he was diagnosed, I will never truly know how much he is hurting or how much he really suffers on a daily basis. I wish I could just wave a magic wand over him and take all his pain away, or just wish that he never got sick in the first place.
There have been a many times I have thought, as hard as we have it, there is always someone out there worse off than us. There are parents mourning the loss of their child. There are children mourning the loss of their parents. There are families struggling to say goodbye to loved ones. There a families trying to cope with a terminal illness. I really could go on, but you get my drift.
John will never improve. Now it is just a matter of getting the medication right and making things easier for him. That is why we now have grab rails throughout the house. He will continue to do physical therapy, speech therapy, and the dietitian will keep a check on him. There has been a bit of adjusting with the rails and wheelchair, but as a family, we will get there.
Thank you for taking the time to read this.
Chrissie and John
*A ventriculoperitoneal (VP) shunt is a device used to relieve pressure from the brain caused by fluid accumulation. VP shunting is a surgical procedure that is primarily used to treat a condition called hydrocephalus, which occurs when excess cerebrospinal fluid (CSF) collects in the brain’s ventricles. CSF cushions your brain and protects it from injury inside your skull.
*Lumbar-peritoneal shunts (LP) are used in neurological disorders, in caseses of chronic increased intracranial pressure to drain excess cerebrospinal fluid (CSF) from the Subarachnoid cavity.
I would like to introduce our first featured Chiari story. It comes from a lovely lady named Nicole Gaudette. She has been kind enough to allow me to share her story with all of you in hopes that it can help someone else on their Chiari Journey.
As always, stay positive!
*Update on Nichole. She recently underwent decompression surgery in Mass. on September 11, 2015. She is recovering at home.
Hi my name is Nicole Gaudette. I am 44 years old and the proud mother of 3. In September 2011, I was diagnosed with Chiari. I had never heard of this condition until I had an MRI.
I first started having my migraines when I was 16. I fell at home from a dizzy spell. I tried to get up but couldn’t because my legs hurt and were numb. I was rushed to the hospital and was given a Myelography. (That is when a spinal catheter is used to put dye into the spine and a special X-ray is taken. Spinal fluid was also drawn.)
During the procedure, something went wrong. From that point on I continued to have migraines. I had several MRIs after that to find the cause of the migraines while I continued to suffer.
Over the years I continued to have migraines. My doctor would give me Demerol shots for the pain and then prescribe me Imitrex shots for the migraines. The shots made my head burn, but it was the only relief that even touched my migraines. My life was never the same.
In 1997 I had my daughter then my son in 1999. My pregnancy previous to these was via C-section. Delivery was tough. I had awful head pressure with both, but I thought it was just my usual migraines.
The summer of 1999 my family and I went to an amusement park. While there, I was on a ride where the walls spin, floor drops and you are stuck to the wall from the force of gravity. I became very ill. I couldn’t breath, my head hurt beyond words, and I thought I was going to die.
When I got off of the ride, my legs felt wobbly, I was weak all over. From this point things went down hill. I began to have migraines and pressure headaches more often. My legs, arms would go numb for no reason.
In 2009 I became a self-catheter patient due to urine retention. I also have problems with bowel movements. December 21, 2012 I had a single level c5/c6 fusion. After my diagnosis in September 2011, many doctors said Chiari was no big deal, and that it could not be the cause of all my problems.
Because of Chiari, I have lost some hearing in my left ear, my vision is blurry, I’m weak all over, and tired all the time. I have tried to work a regular job, but due to my condition, I haven’t been able to work since June 2011. I was approved for Social Security Disability after 4 years of fighting. Social Security doesn’t recognize Chiari Malformation as one of its “Disabling Diseases”.
In June 2015, I was finally given the go ahead to have decompression surgery. September 10, 2015 is the big day. Almost exactly 4 years after being diagnosed with Chiari Malformation.
I hope sharing my story will be able to help others struggling with Chiari and remind them to keep fighting, and don’t take “no” for an answer.
Thank you for sharing Nichole!