I have not written a blog post since May 31st, and it is taking all of my energy and then some to write this one. September is Chiari Awareness Month, and it is year number two of me celebrating it, and while last year I was very enthusiastic about it, this year is different. I'm realizing how much of a grasp Chiari has on me, and how much I have been avoiding talking about how I feel mentally and physically, because I want to believe I am one of the ones who were able to beat it, but I am not. So, for this year, my Chiari awareness month will be dedicated to me facing my fear of putting all that I have been feeling this summer out there, to let everyone know what has been happening physically and mentally, and how I am using my realization of how sick I am to inspire the people around me.
Life Changes:
In July, I starting back as a permanent teacher at Elite School of Dance and couldn't be happier that I am still in the dance world. I always knew in my heart that no matter where I would end up in life, I'd always end up back home, because I knew that that was where my heart was forever. Each night I leave the studio with little realizations of why I was needed back at the timing I came back at.
On September 25th, I start college classes again at Green River College in Auburn, WA. This year I am taking all of my prereqs (only 4 classes) to go towards my application for the Physical Therapy Assistant program, but I wanted to spread them out so I didn't overwhelm myself too much too soon.
On paper it seems like I have things figured out, and for the most part I do, which I am BEYOND blessed for that I have the drive to go beyond my sickness and go the extra mile. However, I am still grieving over what I call "my past life." I avoid thinking about my time at Cornish a lot. I was living my dream... When I am up in Seattle now, I don't go into the buildings anymore. There is a block. The same goes with watching old routines that I did during my time at Elite. I know that this will get easier with time...
CHIARI SYMPTOM UPDATES
Headaches:
Two weeks before my second surgery, I have a C2-C4 bilateral rhizotomy surgery (nerve burning surgery in my upper neck for pain management). This helped immensely after I had my surgery and was healing. Unfortunately, near the beginning of July, this rhizotomy wore off. Typically these are supposed to last anywhere from 6-18months, and mine only lasted 7. I have my second procedure scheduled for Friday, October 13th. I will be getting these surgeries about every 7-18months as long as the pain continues to come back for, well, forever, but that is a small price to pay for quality of life.
I still have daily headaches. They never go away and never really have. I now see a headache neurologist at Swedish and we are going through a slew of different vitamins and medications to see which ones help the best. Nothing will help fully, but anything that helps quality of life is good.
Upper Spine:
My cervical spine muscles are pretty much a hot mess, but were much worse, so technically have become better. The back of my skull and neck, especially where my scar is, has its good days and and with pain. Often times at night I make sure to ice it to decrease any inflammation the day might have added to that area. Overall I just have to be very careful with motion in this area considering I have a lot of my spine missing.
Luckily my nerves are now desensitized enough and my muscles are less spasmed that my physical therapist can use a special device to work on my scar tissue! I was very much apprehensive the first day we worked on it due to the fact that behind the bottom of my scar, there is no bone, only brain tissue and muscles as well as whatever else is back there.
Hands & Other Neurological Issues:
The syrinx I had that went down the entire length of my spinal cord killed so many of my nerves, and really killed off nerves connecting to my hands. The strength in my hands is rapidly getting worse and I'm just rolling with it. It's hard to open bottles, pull things apart, cut things with a fork and knife, and life/hold heavy things. Sometimes when I get too fatigued, I lose control of being able to type or handwrite, but luckily technology can help get around that. I of course still have all of the symptoms from my previous blog posts, but a new one that has come up is that now I have a hoarse voice from time to time, and it is becoming more consistent. Not too much of an issue, just more of an observation. I thought it was from my asthma from all of the fires, but guess not!
Lower Spine/Perineural Cysts:
My lumbar spine is just stuck, pretty much just like my entire back and neck! I have a natural sway back so that most definitely does not help my pain level. Every night and sometimes multiple times during the day, I have to spend time lying on my back with a heating pad to ease muscle spasms and my pain level.
Perineural cysts. That is a new medical term that I have yet to say. It showed up on my very first MRI back in October of 2015 before I even knew of Chiari when I was getting check out for a lumbar spine fracture that I had. They are rare (of course) cysts that lie on my sacrum along my nerve roots, and the nerves actually go through the cysts themselves. Anyways, my doc at the time dismissed them because they were not causing any symptoms. However, I'm pretty positive that they are now. I think they have grown due to the fact that I was diagnosed with Syringomyelia and have had brain and spinal cord trauma since then. My pain is extremely centralized in that area and is a 9 out of 10 at its worst making my surgeon order me an MRI and X-rays. I will be scheduling those this week, so we will see what is up with that at a later note. Hopefully this can be dealt with in a simple way, but with my track record, that doesn't seem too promising.
Legs:
Like I said previously, so many of my nerve routes were damaged due to the fluid in my spinal cord. I have many moments throughout the day where my legs go entirely numb, sometimes just numb or sometimes numb with the painful needle feeling. Usually it's my right leg that decides to go, but my left leg definitely has its moments. Most of the time if I just look down at my leg I can go back to controlling it even if I can't still feel it, but I do often times just sit down and relax. I still can't jump very well, but I have been able to get off the ground a few times which has been exciting!
Mental Health:
I am usually all about talking on this subject, but I am very much working on this part of healing right now, as you can probably get the hint about from my intro bit/life changes bit. What I will say on this is that I do own that I have many, many, many, many problems in this area as anyone would if they have gone through all of this in this short amount of time. Even though I won't say details now, I will never hide that what I face is real, because I am a firm believer that mental health needs to be talked about more and more in this ever changing world.
WOW. If you have made it this far, thank you from the bottom of my heart. I have been trying to write this post this entire month, and it took me a good three days to actually write and post live. Chiari is real, raw, and ends on a good note for some, but leaves some fighting longer and harder. No matter how damn weak I feel, I will fight. Thank you for surrounding me with so much love and support through this life transition of mine. #conquerchiari #chiariawarenessmonth
Monday, September 18, 2017
Wednesday, May 31, 2017
Weather Changes & Symptoms
Hello everyone! Its safe to say that the month of May has had some CRAZY weather changes! A lot of people who have chronic illnesses have problems with different types of weather due to the change in atmospheric pressure and can sometimes even predict what the weather will do before it actually happens. It's kind of cool when you think about it, but it is definitely not fun! People ask me if my symptoms change or heighten during these times, so this post is going to be all about that. I've never really listed out all of my symptoms as a whole, so this will be good for myself and to help inform others. *Reminder that this only applies to my case. Every single Chiari case is different!*
Chronic:
- headache
- difficulty sleeping (insomnia)
- fatigue
- hand weakness
- memory problems
- photophobia
- back pain
- depression/anxiety
- poor eye tracking/focusing
No matter what I do, whether it be a good day or a bad day, these are the things I deal with everyday and if not, more then half of the week.
Off and On:
- dizziness
- leg weakness
- numbness/tingling in hands, legs, and feet
- nausea
- blurred vision
- tinnitus
- difficulty swallowing
- facial numbness
- slurred speech
- abnormal gag reflux
- restless leg syndrome
These symptoms typically occur when I'm having a bad day, or just randomly with no cause which is always a fun time.
Heightened By Cold:
- neck pain
- fatigue
- difficulty swallowing
- all over body weakness
- back pain
When the temperature decreases or a storm is coming, these symptoms of mine go crazy. It becomes hard to move my spine and overall my muscles tighten and won't relax. I have noticed that during the fall and winter, I have much more back pain then I do in the springtime (at least that's how it is looking).
Heightened By Heat/Sun:
- headache
- dizziness
- weakness in hands, legs, and feet
- numbness in hands, legs, and feet
- balance problems
- facial numbness
- photophobia
- slurred speech
- poor eye tracking/focusing
- restless leg syndrome
When it is sunny out and hot, my nervous system goes into overdrive. All of the nerves that have been permanently damaged are revealed to me and it makes it harder to use the right side of my body, especially my hand. Typically on days like these, I don't look at my phone as much and I can't read well and I have to wear my indoor photophobia glasses. It's very hard for me to stay cool and when I get overheated, my nerves go crazy as well as my restless leg syndrome.
I hope that this post was really informative to you all and helps you understand how weather affects me and others with chronic illnesses!
Chronic:
- headache
- difficulty sleeping (insomnia)
- fatigue
- hand weakness
- memory problems
- photophobia
- back pain
- depression/anxiety
- poor eye tracking/focusing
No matter what I do, whether it be a good day or a bad day, these are the things I deal with everyday and if not, more then half of the week.
Off and On:
- dizziness
- leg weakness
- numbness/tingling in hands, legs, and feet
- nausea
- blurred vision
- tinnitus
- difficulty swallowing
- facial numbness
- slurred speech
- abnormal gag reflux
- restless leg syndrome
These symptoms typically occur when I'm having a bad day, or just randomly with no cause which is always a fun time.
Heightened By Cold:
- neck pain
- fatigue
- difficulty swallowing
- all over body weakness
- back pain
When the temperature decreases or a storm is coming, these symptoms of mine go crazy. It becomes hard to move my spine and overall my muscles tighten and won't relax. I have noticed that during the fall and winter, I have much more back pain then I do in the springtime (at least that's how it is looking).
Heightened By Heat/Sun:
- headache
- dizziness
- weakness in hands, legs, and feet
- numbness in hands, legs, and feet
- balance problems
- facial numbness
- photophobia
- slurred speech
- poor eye tracking/focusing
- restless leg syndrome
When it is sunny out and hot, my nervous system goes into overdrive. All of the nerves that have been permanently damaged are revealed to me and it makes it harder to use the right side of my body, especially my hand. Typically on days like these, I don't look at my phone as much and I can't read well and I have to wear my indoor photophobia glasses. It's very hard for me to stay cool and when I get overheated, my nerves go crazy as well as my restless leg syndrome.
I hope that this post was really informative to you all and helps you understand how weather affects me and others with chronic illnesses!
Tuesday, May 9, 2017
CLEAR MRI & 1 Year Anniversary of Surgery #1
As many of you already know, last Monday, May 1st, I had my three month post-op MRI scan and follow up with Dr. Litvack. Leading up to this appointment, I had so many emotions and I honestly thought my spinal cord would still have fluid in it with the amount of back and neck pain I was still having each day. When Dr. Litvack came in all cheery, I was so relieved. He pulled up my imaging from before my second surgery and the one from earlier that day. My spinal cord was clear and my cerebellum was in the correct place! I was worried that after the cerebral tonsils were taken out that my cerebellum would slump down, but now my brain looks like a normal brain (pic below) with extra room to spare!
I still have a lot of irreversible brain and nerve damage, but nothing can get worse unless something weird happens. Dr. Litvack said he would be seeing me within 2-3 YEARS to check up on my lesion on my frontal lobe and to make sure nothing crazy is happening back there. My job is to track my symptoms and any changes that happen. Obviously if I start to feel really bad I have to call the neurosurgery unit. I also need to track any symptoms that increase quickly in case I have a leak in my dura patch (CSF fluid leak) which could cause hydrocephalus. Dr. Litvack referred me to a headache neurologist in hopes that I find relief in that department. I still get headaches at least 4 times a week, but usually more than that. I will still continue to be a patient at the pain clinic and my physical therapy and massage therapy places. It's still a long road ahead, but my mind is eased.
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Alrighty, second part of this post. Today is May 9th, meaning my first Chiari surgery was exactly a year ago! I seriously can't believe it has only been a year since I first went under the knife. A lot of my Facebook memories are popping up, and one of my posts talked about how I couldn't wait to be fixed after this surgery... Little did I know that the first one would just make me worse and only 8 months later I would be having another one. Talk about trauma! I pray that I never have to go through another surgery, but it sounds like I won't need to for a while :) crossing my fingers! I never want to go through that again. Although it has only been a year, I feel like this whole thing has aged me 20 years. They told me it is a 6-8 week recovery, but that's only for the incision and in some cases, the muscles and tissues underneath. In reality, it will take years. Here's to the next years of determination and recovery!
I still have a lot of irreversible brain and nerve damage, but nothing can get worse unless something weird happens. Dr. Litvack said he would be seeing me within 2-3 YEARS to check up on my lesion on my frontal lobe and to make sure nothing crazy is happening back there. My job is to track my symptoms and any changes that happen. Obviously if I start to feel really bad I have to call the neurosurgery unit. I also need to track any symptoms that increase quickly in case I have a leak in my dura patch (CSF fluid leak) which could cause hydrocephalus. Dr. Litvack referred me to a headache neurologist in hopes that I find relief in that department. I still get headaches at least 4 times a week, but usually more than that. I will still continue to be a patient at the pain clinic and my physical therapy and massage therapy places. It's still a long road ahead, but my mind is eased.
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Alrighty, second part of this post. Today is May 9th, meaning my first Chiari surgery was exactly a year ago! I seriously can't believe it has only been a year since I first went under the knife. A lot of my Facebook memories are popping up, and one of my posts talked about how I couldn't wait to be fixed after this surgery... Little did I know that the first one would just make me worse and only 8 months later I would be having another one. Talk about trauma! I pray that I never have to go through another surgery, but it sounds like I won't need to for a while :) crossing my fingers! I never want to go through that again. Although it has only been a year, I feel like this whole thing has aged me 20 years. They told me it is a 6-8 week recovery, but that's only for the incision and in some cases, the muscles and tissues underneath. In reality, it will take years. Here's to the next years of determination and recovery!
Tuesday, March 28, 2017
One-Year Diagnosis Anniversary
I cannot believe it has already been an entire year! I have been staring at this blank screen all day long, not knowing where to begin because so much has changed since this day a year ago sitting at Swedish Cherry Hill.
I did some counting looking back at this year and here are some stats I have come up with:
Surgeries: 2.5 (counting my small rhizotomy procedure)
Days at the hospital: 9
MRIs: 5, about to be 6
Massage Therapy appts: 19
Physical Therapy appts: 64
Before my diagnosis, I had never had an MRI before let alone a surgery or hospital stay. It was crazy how things flipped around so so quickly.
On that rainy Monday in 2016, I had no idea how much this diagnosis and surgery(ies) would change my life. I didn't even realize that Chiari was a chronic condition until I became one of the 20% of people who don't get better/becomes worse after surgery. I remember my mom just dropping me off back at my dorm after a full day of meeting 3 different specialist and getting 7 viles of blood drawn and just carrying on with my day, going to Terpsichore Landing showings that night and still dancing, even though my vision would go black. I was optimistic and I persevered through the rest of my semester to finish and went straight into surgery after finals week. The pain was unbearable, and I thought it would never end.
After my first surgery, I actually did get better. I felt good and went back to school just 4 months post op. I was strong, but got worse very quickly. I tried to push through it because I thought it was "all in my head," but MRIs showed it actually was. "We have to keep watching to see if the syrinx goes away," they said. It didn't. It grew. All the way down my spinal cord. There I am, less than a year since being diagnosed, under the knife once again having a surgery done that hasn't been done in 10-15 years. They said I was that bad. I believe it.
That surgery combined with the rhizotomy procedure (nerve burning for pain control), I am feeling relief. I still have an abundance of symptoms that aren't really "symptoms." My doctor says that some of the neurological problems should get better within the next 6 weeks, but that depending what my MRI shows, that might be my new normal. That is my reality.
Even though this year has been an INSANE rollercoaster and so much has changed, I have learned so much about myself. I never knew how much persistence I held within me, and that has made me strong. I will never ever ever take my health for granted ever again, because all I want to do is have as much energy as I used to, not needing to worry about midday naps and resting times. One of my favorite mantras that I have always strived to live by is to enjoy the little things, the simple life, and if being diagnosed with a chronic illness doesn't force you down that route, I don't know what would. The quest for a cure continues, and as long as I live, Chiari awareness will NEVER stop. The Chiari community is very small, but very powerful. Here's to many more years ahead continuing to fight this battle. #conquerchiari
I did some counting looking back at this year and here are some stats I have come up with:
Surgeries: 2.5 (counting my small rhizotomy procedure)
Days at the hospital: 9
MRIs: 5, about to be 6
Massage Therapy appts: 19
Physical Therapy appts: 64
Before my diagnosis, I had never had an MRI before let alone a surgery or hospital stay. It was crazy how things flipped around so so quickly.
On that rainy Monday in 2016, I had no idea how much this diagnosis and surgery(ies) would change my life. I didn't even realize that Chiari was a chronic condition until I became one of the 20% of people who don't get better/becomes worse after surgery. I remember my mom just dropping me off back at my dorm after a full day of meeting 3 different specialist and getting 7 viles of blood drawn and just carrying on with my day, going to Terpsichore Landing showings that night and still dancing, even though my vision would go black. I was optimistic and I persevered through the rest of my semester to finish and went straight into surgery after finals week. The pain was unbearable, and I thought it would never end.
After my first surgery, I actually did get better. I felt good and went back to school just 4 months post op. I was strong, but got worse very quickly. I tried to push through it because I thought it was "all in my head," but MRIs showed it actually was. "We have to keep watching to see if the syrinx goes away," they said. It didn't. It grew. All the way down my spinal cord. There I am, less than a year since being diagnosed, under the knife once again having a surgery done that hasn't been done in 10-15 years. They said I was that bad. I believe it.
That surgery combined with the rhizotomy procedure (nerve burning for pain control), I am feeling relief. I still have an abundance of symptoms that aren't really "symptoms." My doctor says that some of the neurological problems should get better within the next 6 weeks, but that depending what my MRI shows, that might be my new normal. That is my reality.
Even though this year has been an INSANE rollercoaster and so much has changed, I have learned so much about myself. I never knew how much persistence I held within me, and that has made me strong. I will never ever ever take my health for granted ever again, because all I want to do is have as much energy as I used to, not needing to worry about midday naps and resting times. One of my favorite mantras that I have always strived to live by is to enjoy the little things, the simple life, and if being diagnosed with a chronic illness doesn't force you down that route, I don't know what would. The quest for a cure continues, and as long as I live, Chiari awareness will NEVER stop. The Chiari community is very small, but very powerful. Here's to many more years ahead continuing to fight this battle. #conquerchiari
Tuesday, March 7, 2017
Changes and Realizations
Hello everyone. This post is a bit of a random one filled with many tidbits of information that have accumulated throughout the last month. Overall, my recovery has been great. I have my pain managed very nicely and I have not pushed myself too far. I'm already off of my muscle relaxers and am only taking oxy at night to help keep my pain low while I try to sleep. I still have a great amount of nausea, so I'm thinking that will not go away this time. That's okay, I'll figure out how to manage it eventually. So far ginger ale has been attached to my hip!
Being home has been so great. It's not my ideal thing to be out of school with no job at home, but I had no choice. Focusing on my health 100% has been just what I needed. Hanging out with my parents, my sister, and the animals is fab, especially my sister. She keeps me going and is my best friend. We goof off, watch YouTube videos, listen to Ed Sheeran, and pretty much just make the house loud. There is never a dull moment!
I was able to start physical therapy again and will be starting massage therapy again here soon. PT is my saving grace! I have so much fun there with the trainers and therapists and obviously leave feeling much better. I feel that knowing the muscles of your body that affect you makes the experience much more successful. I like knowing what each exercise does for me and how it works paired up with the therapists manual work. I will be in physical therapy for the long haul, so I'm glad I love going :)
A few weeks ago, I met up with another girl in my community who has Chiari. We told her to go see my surgeon to get checked out and to possibly get surgery to further her treatment. She is now having surgery next week and is excited! However, it has been a crazy few weeks for Swedish's Neuroscience Institute (SNI). If you haven't already seen this, The Seattle Times is currently investigating SNI for having a high number of surgeries and quality of patient care, specifically investigating Dr. Delashaw due to complaints from patients and other health care workers within SNI. I will leave a link to the articles below from the Seattle Times if you want all of the details that I'm not going to go into on my blog. However, due to this investigation, my surgeon Dr. Delashaw has left Swedish leaving my case only six weeks post op with no doctor at the moment. Luckily today the nurse emailed me with the information about my new doctor which eases my nerves a bit, but that doesn't help the fact that the doctor I 100% trusted and has helped me in so many ways is no longer there. It's definitely hard and obviously not the ideal situation, but I will always trust Swedish's Neuroscience Institute. I have had nothing but great care and successful surgeries that I know in my heart I truly needed. I am now going to send a letter to the editor of The Seattle Times in hopes that it is published for all of the hundreds of patients like me. The people who have received great care and whom he has saved because even though I am not dancing, he did save me. He gave me back my quality of life and I am forever grateful.
So that wraps this random blog up. I am getting stronger every day and even though I am not at school or dancing, I have now accepted this path that I am on. Took me long enough.. but I am 95% sure I know what my next step in this world is. I don't want to share until I'm 100% sure, but I don't think that will be much longer. Thank you for everyone's never ending support! #conquerchiari
The Seattle Times - SNI Investigation
Being home has been so great. It's not my ideal thing to be out of school with no job at home, but I had no choice. Focusing on my health 100% has been just what I needed. Hanging out with my parents, my sister, and the animals is fab, especially my sister. She keeps me going and is my best friend. We goof off, watch YouTube videos, listen to Ed Sheeran, and pretty much just make the house loud. There is never a dull moment!
I was able to start physical therapy again and will be starting massage therapy again here soon. PT is my saving grace! I have so much fun there with the trainers and therapists and obviously leave feeling much better. I feel that knowing the muscles of your body that affect you makes the experience much more successful. I like knowing what each exercise does for me and how it works paired up with the therapists manual work. I will be in physical therapy for the long haul, so I'm glad I love going :)
A few weeks ago, I met up with another girl in my community who has Chiari. We told her to go see my surgeon to get checked out and to possibly get surgery to further her treatment. She is now having surgery next week and is excited! However, it has been a crazy few weeks for Swedish's Neuroscience Institute (SNI). If you haven't already seen this, The Seattle Times is currently investigating SNI for having a high number of surgeries and quality of patient care, specifically investigating Dr. Delashaw due to complaints from patients and other health care workers within SNI. I will leave a link to the articles below from the Seattle Times if you want all of the details that I'm not going to go into on my blog. However, due to this investigation, my surgeon Dr. Delashaw has left Swedish leaving my case only six weeks post op with no doctor at the moment. Luckily today the nurse emailed me with the information about my new doctor which eases my nerves a bit, but that doesn't help the fact that the doctor I 100% trusted and has helped me in so many ways is no longer there. It's definitely hard and obviously not the ideal situation, but I will always trust Swedish's Neuroscience Institute. I have had nothing but great care and successful surgeries that I know in my heart I truly needed. I am now going to send a letter to the editor of The Seattle Times in hopes that it is published for all of the hundreds of patients like me. The people who have received great care and whom he has saved because even though I am not dancing, he did save me. He gave me back my quality of life and I am forever grateful.
So that wraps this random blog up. I am getting stronger every day and even though I am not at school or dancing, I have now accepted this path that I am on. Took me long enough.. but I am 95% sure I know what my next step in this world is. I don't want to share until I'm 100% sure, but I don't think that will be much longer. Thank you for everyone's never ending support! #conquerchiari
The Seattle Times - SNI Investigation
Saturday, February 11, 2017
Post-Surgery Update
Well it has been over a month since I have given an update on my health! First off, I was not prepared for the aftermath of my rhizotomy procedure. I was in so much pain, and I was unable to take any anti-inflammatories afterwards for two full weeks. Well, two weeks later I was going under for my second decompression...so it was interesting to say the least.
It is now just about three weeks post-op, and I'm doing much better than expected. This recovery is slightly different than the last for me. I'm dealing with nausea/vomiting rather then pain. I'm already down to one oxy pill every four hours when last time around I was still on three. My fatigue is insane (mainly due to meds), so I find myself asleep more than awake. I have not been out of the house or my bed much, just due to the fact that it takes a lot out of me. I'm trying my hardest to keep my spirits up, but it has been more difficult this time around, most likely due to the fact that Cornish is in session and I feel gross.
Any who... This was a quick update as I don't have much energy to write out more detail. Thank you for all of the continued thoughts, prayers, hugs, and visits. They mean more to me than you know!
It is now just about three weeks post-op, and I'm doing much better than expected. This recovery is slightly different than the last for me. I'm dealing with nausea/vomiting rather then pain. I'm already down to one oxy pill every four hours when last time around I was still on three. My fatigue is insane (mainly due to meds), so I find myself asleep more than awake. I have not been out of the house or my bed much, just due to the fact that it takes a lot out of me. I'm trying my hardest to keep my spirits up, but it has been more difficult this time around, most likely due to the fact that Cornish is in session and I feel gross.
Any who... This was a quick update as I don't have much energy to write out more detail. Thank you for all of the continued thoughts, prayers, hugs, and visits. They mean more to me than you know!
Saturday, January 7, 2017
One Step Forward, 500 Steps Back
It has been quite a while since I have decided to write about my health. I guess I am just in denial of it all. More has changed since just the middle of December, and I feel like I just haven't been able to really reflect and focus on what is actually happening.
My day on December 29th started really early at the Swedish Pain Clinic.
[Oh yeah, side note I am now being treated at the pain clinic THANK GOODNESS. I had some trigger point therapy done on the thoracic area of my back and my doc Dr. Yu recommended facet blocks (rhizotomy) at my C2, C3, and C4 vertebrae in my neck. I had to have two diagnostic testings before he would actually burn and kill off my nerve endings temporarily.]
I checked in and went through with my second diagnostic testing which includes 6 much too long needles going into my spine... super fun. After that I had my neurosurgeon appointment to talk about findings from my continuation of MRIs to check up on my syrinx. I wasn't expecting him to say anything or to find additional fluid in the rest of my spinal cord BUT of course, I got bad news...
Dr. Delashaw came in and honestly had such a disappointing look on his face. He then tells me that my CSF fluid is running completely down my spinal cord. I guess that my case is one of the most complicated he has had in over 10 years based on the fact that I need a second and more aggressive form of brain surgery. In most of the cases he has had in the last decade, just about everyone responded well to just removing part of the skull and C1, and mine did work at first, but anatomy changed for the worst. Now Dr. Delashaw will be going in and opening up the dura (brain lining) and sew a patch in to expand it in hopes that my cerebellum moves along with it. While he is in there, he is going to explore and see if he needs to shave down the lamina of C2 and/or cut out part of my cerebral tonsils. All of this he considers "old school" surgery. He has definitely performed these techniques on patients in the past with great results, and he is hoping that it works for me as well, and that my CSF fluid will flow again correctly and have the continuous syrinx disappear. Phew. That was a lot of information. I'm exhausted just typing it out.
So here I am. Two procedures in the very near future. Jan. 9th (Monday) I will be having my nerves burned and that is just a very quick minimally invasive surgery. I am hoping that with the pain relief I am able to get from this technique that my pain management during my recovery goes a wee bit more smoothly. My brain surgery round 2 is scheduled for Monday Jan. 23rd. I am scared to death, but more frustrated than anything. The only good thing about having this surgery before is that I know somewhat what to expect and I have a whole list of do's and don't's.
It all just feels so surreal, like I'm living in a small box in the middle of the universe of my never-ending nightmare. I want to be "normal" and to do "normal" 20yo things and activities, and I know that I don't get to and I just have to deal with it because this is life and blah blah blah, but I don't want to keep brushing it off like it's nothing, because I should be at school right now dancing and learning about the amazing world and culture around me, but instead I have needles and a hospital bed looming in my future. And it won't be the last time I face this. Two brain surgeries within less than a year. Tell me all of the cliches about how life works and how it's not fair and that there is a reason for all of this, but I just don't want to hear it. I'm not bitter, I'm just frustrated and very very confused. I hope after all of this I can get on my feet and begin to do "normal" things while being "abnormal." All I know of right now is that art is everything, health is fragile, and Chiari needs more funding. Thank you for all of the support. #CMstrong
My day on December 29th started really early at the Swedish Pain Clinic.
[Oh yeah, side note I am now being treated at the pain clinic THANK GOODNESS. I had some trigger point therapy done on the thoracic area of my back and my doc Dr. Yu recommended facet blocks (rhizotomy) at my C2, C3, and C4 vertebrae in my neck. I had to have two diagnostic testings before he would actually burn and kill off my nerve endings temporarily.]
I checked in and went through with my second diagnostic testing which includes 6 much too long needles going into my spine... super fun. After that I had my neurosurgeon appointment to talk about findings from my continuation of MRIs to check up on my syrinx. I wasn't expecting him to say anything or to find additional fluid in the rest of my spinal cord BUT of course, I got bad news...
Dr. Delashaw came in and honestly had such a disappointing look on his face. He then tells me that my CSF fluid is running completely down my spinal cord. I guess that my case is one of the most complicated he has had in over 10 years based on the fact that I need a second and more aggressive form of brain surgery. In most of the cases he has had in the last decade, just about everyone responded well to just removing part of the skull and C1, and mine did work at first, but anatomy changed for the worst. Now Dr. Delashaw will be going in and opening up the dura (brain lining) and sew a patch in to expand it in hopes that my cerebellum moves along with it. While he is in there, he is going to explore and see if he needs to shave down the lamina of C2 and/or cut out part of my cerebral tonsils. All of this he considers "old school" surgery. He has definitely performed these techniques on patients in the past with great results, and he is hoping that it works for me as well, and that my CSF fluid will flow again correctly and have the continuous syrinx disappear. Phew. That was a lot of information. I'm exhausted just typing it out.
So here I am. Two procedures in the very near future. Jan. 9th (Monday) I will be having my nerves burned and that is just a very quick minimally invasive surgery. I am hoping that with the pain relief I am able to get from this technique that my pain management during my recovery goes a wee bit more smoothly. My brain surgery round 2 is scheduled for Monday Jan. 23rd. I am scared to death, but more frustrated than anything. The only good thing about having this surgery before is that I know somewhat what to expect and I have a whole list of do's and don't's.
It all just feels so surreal, like I'm living in a small box in the middle of the universe of my never-ending nightmare. I want to be "normal" and to do "normal" 20yo things and activities, and I know that I don't get to and I just have to deal with it because this is life and blah blah blah, but I don't want to keep brushing it off like it's nothing, because I should be at school right now dancing and learning about the amazing world and culture around me, but instead I have needles and a hospital bed looming in my future. And it won't be the last time I face this. Two brain surgeries within less than a year. Tell me all of the cliches about how life works and how it's not fair and that there is a reason for all of this, but I just don't want to hear it. I'm not bitter, I'm just frustrated and very very confused. I hope after all of this I can get on my feet and begin to do "normal" things while being "abnormal." All I know of right now is that art is everything, health is fragile, and Chiari needs more funding. Thank you for all of the support. #CMstrong
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