CRUSHED IT! $700 for a CURE!

September is over and so ends the 2013 Crush Chiari campaign for Chiari and Syringomyelia awareness sponsored by the Chiari and Syringomyelia Foundation (CSF). This year was my first to participate as a fundraiser and although I know I drove most of you crazy with my incessant posting, I wanted to share my gratitude with you all for your support. The funds donated through the jars have been tallied and donated to the fundraising site. Those of you who supported me in the Crush Chiari campaign raised $700 to go for a cure! You helped me exceed my goal by $200 and have allowed me the opportunity to be one of the top fundraisers for the cause!

The overall Crush Chiari goal was $15,000 and, although we did not reach that goal, you all helped us raise a lot of money for a good cause. As of this evening CSF has raised $1,665 (11.1% of their goal). Please know that YOUR support helped the foundation raise over 42% of that money by supporting me through my fundraising page.

I want to especially thank the locations who allowed me to place my donation jars at their locations, those of you who donated directly on the #CrushChiari website, those who gave through the donation jars and, most especially, those of you who spread the word by teaching others about these conditions. The support I was given last Wednesday for the wear purple for a cure day was so humbling for me! Those of you who wore purple showed how much you truly cared about me and my desire to find a cure for those of us with this condition. The flood of purple did the trick because every time someone would see those of us matching in our purple attire we could explain how we matched due to the Chiari Awareness Month and we could tell them about Chiari. That was what the whole campaign was about. Thank you for helping me realize my vision!!

I’d like to take this time to thank my family for their dedication to helping me raise money for this campaign despite all of the setbacks we encountered this month. Justin Hair, Ginger & Jim Powell, Amber Love, and Stephanie & Aaron Powell have been the epitome of family during this time. They helped me drop off jars, pick them up, pester you all with posts about awareness and donated not only funds, but their time to support me in this cause. They did this even as I underwent my open-heart surgery last week because they knew how much this campaign truly meant to me. Their support should most definitely be recognized!

The following businesses allowed me to place jars at their locations raising $151.80 collectively for a cure:

Cowboy's General Store

Dismuke’s Pharmacy

Luling Tire & Automotive

NAPA Auto Parts - Salt Flat Feed & Mercantile

Stanley Theater Collectibles

Taqueria Durango

Texas Lutheran University Bookstore

The Watermelon Shop

Plans for Future Fundraising and Awareness for Chiari and Syringomyelia:

Unite@Night, June 2014:

I will be participating in the Unite@Night Walk with the CSF Foundation in June of 2014. I have not selected a date for this walk, yet; however, I would LOVE for you to all participate with me. Here is information from their website about the walk:

“The Chiari & Syringomyelia Foundation’s (CSF) unite@night is a one-mile casual evening walk in various locations around the country and in Canada during the month of June. This walk will bring together people who are suffering with devastating effects of Chiari malformation, syringomyelia, and related disorders such as, but not limited to: Ehlers-Danlos Syndrome, hydrocephalus, intracranial hypertension, dysautonomia, and more.”

You can find more information on their website here: http://www.csfinfo.org/walk-information1/.

Crush Chiari, September 2014:

If you would like to participate in next year’s #CrushChiari campaign by allowing me to place a jar at your business, please send me a message. You can place a jar at your business for any length of time you wish. If you would like to participate only in September, that is fine; however, some have asked to allow the to keep one of my jars at their location year round to raise as much money as possible. I would be happy to make a jar for your location. It won’t cost you anything except counter space and the funds go directly to a great cause!

Conquer Chiari Walk Across America, September 20, 2014:

I plan to do a national walk in September next year to spread awareness about Chiari and Syringomyelia. I will be attempting to set up a walk in the Austin Area. Anyone who wants to help is welcome to contact me. We will begin the process of finding locations in Austin in January. Here is more information:

“The Conquer Chiari Walk Across America is an annual fundraising and awareness event comprised of a series of local walks held on the same day.”

To find out more information about this please visit the website: http://www.conquerchiari.org/ccwaa/ccwaa-main.html.

I don’t plan to give up fighting for a cure for any of these conditions. Chiari and Syringomyelia are a part of my life, despite my utter distain for them, and I want to help others who also have to deal with these situations to have a running start. Raising awareness and funding research is the best way I know to do this at this time. I will continue to fight until a cure is found…and maybe then, I’ll fight to ensure everyone can get the cure no matter his or her financial background. I’ve got a lot of work ahead of me…care to join?

Thanks again for your support! 

Crush Chiari, Not Candy!!

I have talked so many times about raising money for Syringomyelia and Chiari awareness and yet never have…until this September during Chiari Awareness month. I decided I wanted to put my money where my mouth was and donate my money and time to an amazing cause and spread the word about these neurological conditions.

If you wish to donate, please visit: http://csf.kintera.org/crushchiari/mistihair. 

For those of you visiting my blog for the first time, I wanted to share some facts with you about Chiari and Syringomyelia so you have some understanding of what people like me go through daily. Many of us with the condition are unable to have any treatment besides pain management (which doesn't always work). I am not a candidate for the decompression surgery for Chiari (where they remove a portion of your skull to release the pressure) or a shunt for Syringomyelia (where they drain the fluid out of the syrinx [cyst] inside the spinal cord).

About Chiari:

Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. 1 in every 1,000 will be diagnosed with a form of Chiari Malformation.

Symptoms of Chiari Malformation include:

Neck pain; Unsteady gait (problems with balance); Poor hand coordination (fine motor skills); Numbness and tingling of the hands and feet; Dizziness; Difficulty swallowing, sometimes accompanied by gagging, choking and vomiting; Vision problems (blurred or double vision); Speech problems, such as hoarseness; Ringing or buzzing in the ears (tinnitus); Weakness; Slow heart rhythm; Curvature of the spine (scoliosis) related to spinal cord impairment; Abnormal breathing, such as central sleep apnea, characterized by periods of breathing cessation during sleep; and several other symptoms.

About Syringomyelia:

Syringomyelia( sih-ring-go-my-E-lee-uh) is the development of a fluid-filled cyst (syrinx) within your spinal cord. Over time, the cyst may enlarge, damaging your spinal cord and causing pain, weakness and stiffness, among other symptoms. 8 in every100,000 will be diagnosed with Syringomyelia.

Symptoms of Syringomyelia:

Muscle weakness and wasting (atrophy); Loss of reflexes; Loss of sensitivity to pain and temperature; Stiffness in your back, shoulders, arms and legs; Pain in your neck, arms and back; Bowel and bladder function problems; Muscle weakness and spasms in your legs; Facial pain or numbness; Spinal curvature (scoliosis); Numbness and tingling; Spasticity; Paralysis (in severe cases, quadriplegia).

You can find more information by visiting: www.csfinfo.org and www.ASAP.org. As I stated earlier, not all of us are able to have treatment besides pain management. I firmly believe that the money we are able to raise in the Crush Chiari campaign will go to fund research and awareness for doctors and scientists. 

For those of you who have already helped me by putting a jar in your business, donating from your own pocket, or helping me spread the word...please know I am so grateful for you and your help! If you cannot afford to donate, please help me spread awareness. I could really use your help in spreading the word! 

Again, if you wish to donate, please visit: http://csf.kintera.org/crushchiari/mistihair. 

The Big Day

It has been quite some time since I have written in this blog, I apologize; however, things have been completely crazy. My son was born in January and I find myself not having much time to update things as I once had. I wanted to update everyone who was interested in how the labor and delivery went since it was not a “normal” birth by any means thanks to my Syringomyelia. Thanks for reading!

I went to the doctor for my weekly checkup on January 16 and discovered that since my blood pressure was high for several days, I should be admitted for observance for at least 24 hours. Following my 24 hours my blood pressure stabilized, but my symptoms were still present. I saw spots and had a massive headache. They noted that in my lab results I had protein in my urine and was in fact diagnosed with Pregnancy Induced Hypertension (PIH). After several emotional conversations with the doctors, nurses and my case manager, we decided it was in the best interest of the baby and me to stay in the hospital until he was delivered.

On Saturday I started feeling very poorly. I started cramping quite a bit and began having strong contractions. They were coming very fast and I was scared because I was only 35 weeks. We were planning to have the c-section moved up to the following Sunday to allow for my son to grow more and for his lungs to mature. They gave me medication and after several hours they stopped the contractions and I was relieved! They stated they would go ahead and complete a second 24 hour urine test the following day beginning at 6am.

The next day I spent feeling the same symptoms as before. The headache had not subsided and it felt as though everything was becoming more prominent. In the afternoon, while completing the urine test, I discovered that there was a considerable amount of blood in my sample. I called the nurses and they told me to get into the bed and hooked me up to monitors. I didn’t feel strong contractions so I asked if I could take a shower and they agreed. At that time I went to the restroom and discovered even more blood this time and started to panic. The nurses came in once I called and said they needed to call the doctor. When the doctor saw the blood, she examined me and discovered that there was even more blood. She said that the amount of blood I had was not considered normal and I needed to have the baby that night. She informed me that I had a placental abruption.

I went into surgery at 9:30pm and was terrified. The doctors, my husband and I decided that it was safer to have the baby via c-section with general anesthesia due to the Syringomyelia. The c-section was necessary due to the placental abruption and the discovery that my son had turned into a breech position overnight (which was likely what caused all the commotion the night before). During the c-section, my anesthesiologists were very careful about intubating me because of my Chiari type 0. A person with a Chiari should not have their heads hyper extended and they were very careful with me to ensure they did not extend my head too far.

When the doctor pulled my son from me, they discovered that the anesthesia had caused problems for him. His heart and breathing stopped and they had to revive him. For this, I am grateful that I was asleep; however, my being asleep is what caused these terrible issues to have occurred in the first place. The doctors got him stabilized and moved me into recovery and him into the NICU. My goal was to hold my son first, and that was no longer a possibility. I did not know that he was taken to the NICU until I was awake (obviously) and I had a very difficult time with this fact. I was not able to see him until the following morning at about 10am. I pushed myself so hard to pass all their physical tests in order to see my sweet son. Following delivery, I had an uneventful stay myself, aside from some stray bleeding from the placental abruption and the obvious pain from delivery. All my pain was masked because I could not have my little boy in the room with me. I was released four days after delivering and did not anticipate the NICU pediatrician would let my son go as we had hoped. We were pleasantly surprised when he stated that he would allow him to come home with us!

I spent 8 days in the hospital. None of these days were related to my Syringomyelia or Chiari malformation. I am not certain of what decision I would have made if I were to do this all over again. I realize that my son was affected by the anesthesia; however, he is here, healthy and in my arms just as I had hoped and prayed, despite the way he entered the world. I have had a strong relapse into the world of pain and discomfort caused by Syringomyelia following the birth of my son. I did not have nearly as many symptoms and felt almost “cured” while pregnant with him. Now I am back to the way I was before my pregnancy. After many doctor visits and MRI’s later, it has been decided that there is nothing anyone can do to minimize my symptoms. For now we are only treating the pain and hoping that one day a medication will help slow the degradation process. It’s not an easy thing to have, but it was the hand I was dealt and I will try to fight this as long as humanly possible – cure, or no cure.

A Rare Glimpse of Vulnerability

I’d like to give you a rare glimpse into my true emotional side of my diagnosis. I try very hard to be positive most of the time but my husband was there last night to witness what a true emotional breakdown is when talking about the fears of what is to come in the future with this disorder. The truth? I’m scared.

So much is unknown. All the research that I have read is merely speculation of what “could” happen to me because each case is completely unique. The possibilities range from no symptoms (which is obviously not my path) all the way to death. I guess it just troubles me when I think about how devastating my diagnosis really was in March 2011. I really want to just forget about my diagnosis and live life as a normal adult, but my symptoms don’t allow me to do that these days.

I have the delivery of my son coming up and I’ve had what they call a patient care conference at the hospital. My case is quite rare and the room was full of doctors and medical professionals offering me some sort of insight into what my delivery might be like in the coming months. They discussed that there is not a lot of research for women with my diagnosis who have become pregnant. Luckily, I have a support group that is amazing and full of women who also conceived when diagnosed with Syringomyelia and/or Chiari. One doctor (anesthesiologist) felt that I could handle a natural birth, while my obstetrician and perinatologist both recommended a c-section delivery. The meeting went on for an hour and a half discussing both the pros and cons of both sides. In the end, we all agreed that a c-section would be the best choice for me. The next decision will come from the type of anesthesia I will be given, whether it is general (completely asleep) or an epidural.

Yesterday proved to be a difficult one for me. I realized that I am less than two months from bringing my son into this world and I am not sure how it will all play out for me physically. My greatest fear is to not see my son being born due to a possible general anesthesia delivery. The other major fear is that I may not be able to fully care for my son the way most mothers are able due to my physical constraints. What the doctors and I completely agreed upon is that my son is in wonderful health and that my concern is not on how HE is going to handle delivery but more so, how I am going to handle it with my condition. We discussed that pregnancy does not worsen my condition, but potentially a natural delivery could.

Colin, our new son, is doing amazingly well. He is growing quickly and, as of our last ultrasound, weighed 3lbs 5ounces at 28 weeks. This is approximately one and a half pounds larger than the other babies in the same week. We will be 30 weeks tomorrow and will have seven weeks until our little Colin comes into our family. Through all of the fears, I am more anxious to meet my little boy and bring him into our already loving family full of wonderful children. Colin will be our final child and will give us two girls and two boys. I’m truly blessed even through all of the pain and anguish the diagnosis brings me.

Home Stretch

Today I went to the perinatal doctor to see if my non related placenta issues were resolved. The great news is, everything has worked itself out and I am no longer at risk for Placenta Previa! That means that Mr. Colin is doing well. I also went to the regular OB today to see how things were going for my routine appointment and to have my glucose screening. I talked to the doctor about scheduling the c-section; however, they have not had my patient care conference to discuss all my options.
 
In this patient care conference they will discuss my anesthesia options, my overall health and all that has to do with the delivery of my sweet Colin. My doctor seems to think everything should be fine but couldn't give me any specifics. The reason for the anesthesia quandary is related to the syringomyelia. They just want to make sure the cyst doesn't grow any larger.
 
On a positive note, my son is growing VERY well and actually already weighs 3 pounds 5 ounces and is in the 79% of babies in his gestational week. Thank goodness he is super healthy because it makes me feel better emotionally even when my spine is feeling like it might just rip right out of my back! I have now started the two week appointment cycle so I will have more updates on the c-section date as they are able to schedule it. I'm in my third trimester and have only 12 weeks to go if I reach 40 weeks. I am so excited to meet this little guy!

 

Realizing I Have Limitations Related to Delivery

Most expectant mothers worry about going into labor at an inopportune time like at the grocery store or at work. Expectant mothers with Chiari and/or Syringomyelia have a much different outlook on labor and delivery. We have to take so many things into account when it comes to both the safety of our unborn children and the safety of ourselves. We generally do not deal with traditional worries as other mothers do, rather we have new challenges to face.

In the very beginning of this pregnancy I was adamant that I was NOT going to have a cesarean section. My obstetrician and perinatal specialist both recommended c-sections and I promptly stated that I delivered my first two children naturally and I wanted to do the same with Colin. Finally at 23 or 24 weeks I saw a post for a conference presentation on one of my Syringomyelia support group pages about pregnancy with Chiari and/or Syringomyelia that was presented by a leading neurologist for my condition. I watched the video and was shocked that they recommended c-sections for all Syringomyelia patients who had not had surgery. I then posted on the support page asking for any ideas from mothers who had delivered with Syringomyelia. Each mother had their own story, but there was one common theme…DO NOT HAVE A VAGINAL DELIVERY! I was taken aback and did not want to believe that it could affect me so negatively. I conceded and agreed to have a c-section during my last doctor’s visit.

Tonight I watched another webinar from that same well known neurologist in the field and he confirmed my fears. I should NOT have a natural birth. Now for the decisions that face me in relation to my labor and delivery. First off, how should I deliver? The answer is obvious at this point, c-section. The second portion of this is HOW should the c-section be performed?

There are a few options which I have to consider with the consultation of my group of doctors. The first is to have an epidural for my c-section. This is the least ideal for individuals with Syringomyelia because it could cause a magnitude of issues including an infection in my spinal cord. The second is to have a spinal tap. Now many people see this as a highly negative term; however, it is one of the safer ways for a person with Syringomyelia to deliver via c-section. The safest way is to have general anesthesia. I am apprehensive about this because I completely miss out on the birth of my son. The other risk factor for this is that they will have to intubate me. Intubation for individuals with Syringomyelia and/or Chiari will cause serious damage. In fact, people like me should NEVER have their necks hyper-extended. This causes some reluctance for the general anesthesia.

My doctor’s are planning a meeting with each of the necessary points of focus during my delivery prior to our delivery of Colin. My medical arsenal for Colin’s delivery will include my OB, Perinatal Specialist, Neurosurgeon, Neurologist, Anesthesiologist and surgical nurses. I feel like I need to go to medical school just to attend my own delivery of my son.

The one thing that I want to make sure everyone is aware of in all of this is one very important fact, no matter how much I have to go through in order to bring my son into this world; I am willing to give everything for him just as I am for my other sweethearts. My children are my life and I don’t care how much pain I have to be in, as long as they are ok, I am one happy mommy. Thanks for reading through and I will keep you posted as I find out more information about my pregnancy and upcoming delivery.

Conference and Videos from Roger W Kula, MD FAAN, Medical Director Chiari Institute:
CSF presents Pregnancy & Diagnostic Methodologies: http://www.youtube.com/watch?v=Qz6MfRCyfCk
ASAP presents Pregnancy in woman diagnosed with Chiari and/ or Syringomyelia: http://www.asap.org/index.php/online-video-library/pregnancy/

 

Taking Care of Myself to Take Care of My Son

I apologize for the amount of time that has lapsed since my last posting. I am now 26 weeks pregnant and have been medication free, besides the rare days I have had to take a hydrocodone approved by my arsenal of doctors, for the entire pregnancy. My symptoms are not as bad as I predicted; however, there are new things that have surfaced.

My current symptoms are generally intermittent with the exception of the obvious back pain. I do have the traditional pain in the area of the syrinx (cyst). The newest pain point is in my lower back. It sometimes feels like someone has jammed a knife blade in between my vertebrae. That is most definitely not the most pleasant feeling in the world. I lost vision more in the last six months than I have in quite some time. I believe it is just a result of not taking my neurological medication. The burning in my face, neck and arms has returned full force. This is extremely uncomfortable, as I’m sure you can imagine.

I had a trip to the emergency room several weeks back when I had a strange grouping of symptoms. I was 23 weeks pregnant at the time. My symptoms were the burning in my face, arms and neck, shortness of breath, overall weakness and I hadn’t felt the baby move much that day. When I called my doctor’s office they told me with my history I needed to head straight to the emergency room. When I arrived, I was wheeled up to the labor and delivery which was terrifying in and of itself. On a positive note, everything appeared to be fine. Despite my labored breathing, my oxygen level was great and my blood pressure was stable and within normal range. They got a great heart rate for our sweet little Colin and besides just feeling crummy, I was fine, too.  I was released after about 4 hours. I was grateful to have my loving husband there with me to console me through the entire process.

They said that Colin was as healthy looking on the monitors as a 40 week baby. That made me feel so much better and made me grateful that I have been so steadfast in not putting anything into my body that would potentially harm him. I love my son so much and he’s not even here. I’d risk my own health to ensure he is healthy and happy. He’s so much more important than me feeling well…my body is not just mine for these 9 months; I am sharing it with my newest little addition.

I also need to remember that I have to rest more, drink more water, and avoid all things that could potentially harm me or my little guy. Things even unrelated to Syringomyelia or Chiari. Things like walking too much, lifting, over-doing it and being around second hand smoke. Breathing is hard enough during the latter stage of pregnancy, I don’t need help not being able to breathe. So I will try to enjoy the last 14 weeks of pregnancy as much as possible and try to stay as healthy as possible. I will try to keep you all posted on my progress.