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.

What Does This Mean for My Baby?

Every since I was diagnosed with Syringomyelia and Chiari, I have been worried that my genes have been passed on to my children. They have not shown signs of having any syrinx or chiari symptoms; however, I am still worried someday it will happen. As rare as Syringomyelia is, I can't imagine my children going through what I have in the past few years knowing my condition will not get better. I don't want them to live that way.

When I found out I was pregnant, I was ELATED! We wanted a baby so badly and we were going to be blessed with our first child together and fourth child total. After a few days of blissful ignorance on my part, I realized that this is my first baby since being diagnosed with both syringomyelia and chiari. Syringomyelia is not known to be genetic, but chiari could be genetic. I was terrified to think that I could pass this on to my new little life.

My OBGYN group sent me to a perinatal specialist who could explain my genetic predispositions. My husband's first daughter (before our marriage) has Cystic Fibrosis so we were also concerned that I might be a carrier for that and that our baby could have both chiari and CF. It took me a while to feel comfortable enough to go to the doctor because of my guilt knowing I have possibly passed these on to my little one.

We found out that the baby had a less than 1% chance of having CF during our genetic counseling On September 19, 2012 we went to have our anatomy screen of our precious little one and discovered in great joy that we were going to have a boy! That was wonderful news for us because that meant we have two girls and two boys. Perfect family! We then focused our attention to the true reason for our scan which was to discover whether I had passed on the chiari gene to my sweet little boy. After a few moments the doctor said the words I had longed to hear...NO CHIARI! I was so excited that the chiari was not passed on to him that I could jump off the table and hug the doctor. 

Unfortunately, he gave me some news we were not expecting which is unrelated to the chiari, syringomyelia or CF. He told me that my placenta was low and that it can cause bleeding in the pregnancy and I may have to have a C-section. He never said the words "Placenta Previa" but I am concerned that is exactly what it is since the definition of that is a low lying placenta. There are a ton of possibilities for this condition and I am terrified. He did give me a glimmer of hope that I would not have any complications, though. He said that this happens to about 10% of the population and that 90-95% of the population will have the placenta move up and not cause any problems in the pregnancy. I am praying to be in the 95%.

Pregnancy and Syringomyelia/Chiari

Well it has been quite some time since I have posted and it was for a great reason...I found out I'm pregnant! I am presently 17 weeks and have been trying to acclimate to the lifestyle pregnancy and a neurological disorder provide to me. I wish I could say that it has been a smooth ride the entire time, but as you who have chronic pain understand, it is not an easy feat in normal circumstances much less with pregnancy added onto everything! I can no longer take medication to keep my symptoms at bay so this will be a difficult 9 months but the outcome will be a beautiful baby and it will have been well worth the pain.

First Trimester:

My first trimester went by without much of a commotion which was very nice. I didn't have morning sickness, I had limited pain (as limited as possible), and not a lot of syringomyelia or chiari symptoms. I was beginning to thing that pregnancy was my miracle pain reliever...NOPE! 

Second Trimester:

Well I am about a month into my second trimester and for most pregnant women, this is the best possible time. Most expectant mothers love this time because they can begin feeling the baby move, feel less morning sickness and get more energy. Unfortunately for me, it appears to be the opposite. I felt much better the first 13 weeks. I am extremely tired, in more pain than I was previously, and my symptoms have returned. I have discovered my twitches have returned, the burning in my face is back, the sensitive skin has come back full force and the fatigue, well I'm fighting sleep right now because I want to finish the blog!

On a positive note, the baby is doing very well and has passed all of the pre-screenings with flying colors. We will meet our little sweetheart in February and we are very excited!

Our Precious Baby - Due between 2/9/13 & 2/17/13

One Year Later and I’m Still Fighting Back

It’s been so long since I’ve updated this that I’m quite certain that I am going to have a completely new group of readers. My plan for this post is to summarize everything that has happened to me with my diagnosis of Syringomyelia up to where I stand today. Happy reading!

I was diagnosed on March 17, 2011 which happens to be my favorite day of the year, St. Patty’s Day and now my wedding anniversary. I was diagnosed from an MRI that I had on my spine and brain due to migraines and back pain. Originally, I went to the doctor because I had a migraine for 8 days straight. On the ninth day, I decided something had to be done. I had a constant headache from January and each day I suffered with the same, dull, aching headache. My doctor was afraid it was something in my brain so he ordered an MRI. While I waited for my insurance authorization to go through, my back began hurting. That’s when I went back to my doctor and he went ahead and ordered a full spinal MRI, also. The test lasted for nearly 5 hours. They ended up having to do two additional tests while I was in the machine. During this time, the fear I had was that I had a brain tumor. What I didn’t realize at the time, was that although that would be a very terrible thing, the chances of ridding myself of the tumor would have been a lot more simple than this diagnosis could ever be.  My doctor called me within 12 hours of my MRI to let me know the news. At that time, I had no clue what “Syringomyelia” was or even how to pronounce it correctly!

Throughout the year I experience a multitude of changes of symptoms. I have experienced nearly every possible symptom associated with Syringomyelia. We were concerned for several months that I was also suffering from Multiple Sclerosis. That was ruled out earlier this year (February). I was relieved to discover that I did not have that dual diagnosis; however, that 5 MRI series indicated a completely separate issue that I was diagnosed with in addition to Syringomyelia. I was diagnosed with Chiari on February 8 this year and was notified that I was not a candidate for surgery on February 22. I’ve had many stressful moments trying to come to terms with this prognosis. There is currently no hope for a cure and we cannot receive treatments to minimize the effects. Once symptoms are present, damage is done and cannot be reversed. My symptoms are pretty difficult to live with from day to day, but I survive and try to stay positive even though I know truthfully it will not ever really get better.

I am no longer scared of having what I have but I do get very frustrated that I cannot do things like everyone else. I cannot parachute this year like I planned on my 30^th birthday. I wanted to follow my brother’s tradition of his jumping when he turned 30. This is something I cannot do and it bothers me so much. I feel like I am held back from some things everyone else can experience. I’m beginning to come to terms with this but it’s hard to explain to my bosses. They have a hard time understanding my needs based on this diagnosis and although I have FMLA, I have major fears about being fired because I am sick. I’ve even been “counseled” on this because I needed to be in the office more according to my boss. It literally added twenty tons of stress on me when he told me that statement. Every since that day, I have to go to work whether I am feeling good or whether I feel like I will faint (syncope is one of my symptoms).

On a very positive note, I celebrated my one year anniversary of being diagnosed with Syringomyelia by marrying my best friend. My husband, Justin, has been there through the Chiari diagnosis and takes care of me when I am sick. He literally catches me when I fall and makes sure I have everything I could ever hope for to decrease my symptoms. Sometimes it works, sometimes it doesn't, but he always loves me. I'm very grateful to have him and my parents in my life. Without them, I don't think I could have survived this diagnosis.

My goal is that one day I can be a professional advocate for persons experiencing chronic illness such as Chiari and Syringomyelia. I would prefer to travel around the country informing people of these disorders. Chiari is much more common than Syringomyelia and is more known; however, Syringomyelia causes quite a bit of damage to our spinal cords and can paralyze or even kill us if we are not careful. Bobby Jones, famous professional golfer, actually died from Syringomyelia.  Research has come a long way, but there is no cure for either Syringomyelia or Chiari. I hope that I can raise money for the cause one day. Keep us in mind if you have money you would like to dedicate to a charity. I know of several organizations that could make your money go to great use for patients like me and several of the people I know and love suffering from this chronic illness.

Stay strong, live life, be bold, FIGHT BACK! -Misti

Bravery at Any Age

I met a sweet little boy today while I was at work. One of my co-workers actually has a son with Chiari! She brought him up to my office today and I found out that he is such a wonderful kid. He's very young but was very compassionate. He had his decompression surgery three years ago and while he was in my office he showed me the pictures from the day he went in to have surgery. I let him know that I am not a candidate for the surgery. We talked for a while about his symptoms and how it made him feel and we recognized that we had quite a bit of similarities. His mother and I talked a little about treatment options and medication. Luckily, he doesn't have to take very much medication.

The surgery actually helped him to fix some of his damage. I talked to them about his age and that his cells can repair much more quickly than mine which makes me not a candidate for the shunt for the syringomyelia. The fact that my CSF flow isn't as constrained as with many chiari patients, I am not a decompression candidate. As he was leaving my office, he ducked his head back in and said, "I really hope you can get your surgery." I almost cried. What an angel!

He, and the other kids, suffering with this are why I want to become an advocate. I so wish I could afford to do that! I still feel very torn about the possibility of having a fundraiser. My medical bills are piling up very quickly and it's just so hard to get them all paid. When each time I have an MRI it costs me $800 and I have to do this twice per year, the bills add up. My very first MRI session was $1800 my part. It's just insane! That's only for the MRIs (overall my MRI's have cost me over $4,000 which I have to pay out). The emergency room visits, monthly, quarterly, semi-annual and annual doctor's visits add up with co-payments, testing and medications that cost money. It's about a $5,000+ a year disability in which I will never be rid of in the future. That is a scary thought for those of us afflicted.

I want to live my life more like Araja. He is a very positive and outgoing young man and I aspire to have his perky attitude for the remainder of my days. I want to be strong, not only for me and my family, but also for people like him that have to also live with what I do...and do so with great bravery.

Accepting Help

Yesterday was a major test for me. It was the worst pain I had endured since the diagnosis and I didn’t pass the test very well. I am a very headstrong and stubborn person. Those of you who know me are nodding your heads right about now. One of the things that I have to learn to deal with is that I am not able to be as independent as I want to be with this disorder. I have to learn that I need to accept help and ask for it when I need to be helped. It has been a struggle for sure.

Because of the pain, I tend to push people away because I do not want them to have to go through the pain of watching me suffer. It’s not my most prized memory to have someone watching me while I can’t move, but I realize that because people care about me they want to help me through this time. I have to let them help me.

Part of my problem is that I do need help, but I don’t want to admit that I can’t do it on my own. That is the MOST frustrating thing in the world for me. I have been doing things for myself since I was a very young child and here I am, 29 years old, and needing people to help me with the simplest of tasks. I’m not allowed to lift over a gallon of milk. Do you realize how frustrating that can be for a mother? It’s super annoying to not be able to lift my youngest child. I haven’t been able to lift my daughter for over 3 years now.

Another of my issues is that I don’t want to have to be on medication for the rest of my life. That is uber annoying. I especially loathe pain medication. There are several reasons why I can’t stand it and addiction is one of them. I have never been addicted to anything in my life (except food, yummy) but I know that addiction is something that I have feared my entire life.  I guess if I can’t allow myself to rely on people to help, I definitely can’t allow myself to rely on medication for help, either. I have allowed myself to take it again and I see why I was so adamant about not taking it…it doesn’t work. When you have as much pain as I have, it seems that the amount of pain medication I am prescribed is not enough to take away the pain. I will not take anything more than I am currently prescribed, though (even if my doctor says it’s ok).

So here I am, day two laying flat on my back wondering when the pain and symptoms will be relieved and I wonder if I will allow myself the help that I know I need. I truly am blessed with my family and boyfriend because I feel like they are always there to support and help me. I just need to allow them to do that and get over my idea that help makes me weaker. I realize that every day that I have to live with this I become stronger. Today I am stronger than I was yesterday, and that is a fact. I had an emotional breakdown yesterday and I rarely do that anymore. Today I feel confident that I will get better and move on to fight this with every fiber of my being. This grey cloud over me will subside soon; I look forward to the sunshine, again.

New Year, No Change

It has been so very long since I have posted to this blog and I am quite sorry about that fact. Many people have asked how things were going with my health and I felt that an update was warranted. Please forgive the long post this time. I will try harder to keep up with my blog to ensure you all get the information about my illness as quickly as possible.

I write this as I lay in bed because the pain has now resumed and is excruciating. I am trying very hard not to become discouraged with the rapid decline in my health; however, it’s becoming a very stressful thing for me currently. Those of you who are very close to me realize that stress is one of the worst things I have encountered with this disorder. It is like fuel to an already smoldering fire and the pain is so much worse and prolonged when I am stressed out for extended periods. I have decided that I need to go back to the doctor and be referred out to someone regarding the anxiety that has formed based on the diagnosis. I believe that the doctors will be able to aid me in my goal of being less anxious and stressed regarding this disorder.

I went through three or more magnificent weeks of limited pain and mild headaches. I was so very blessed to have gone through that during the holiday season. I was able to spend time with my family, dear friends and my amazing boyfriend and his family and I didn’t have much pain to complain about during that time. That was pure bliss. Unfortunately, with the New Year brought new pain and my symptoms intensified. Literally the first day of the year was the day that my symptoms returned at a greater intensity and they have not left since.

My current symptoms include:

o    Gradual loss of muscle mass (wasting, atrophy)

o    Headache (have had the same one since January 2011)

o    Muscle function loss

o    Numbness or decreased sensation (Index finger and Big Toe are the two most affected areas)

o    Decreased sense of pain or temperature

o    Lessened ability to sense that the skin is being touched (This occurs for me on my upper neck region and base of my spine)

o    Neck, shoulders, upper arms, trunk -- in a cape-like pattern (I’m a sloucher)

o    Slowly, but progressively, gets worse (That doesn’t seem fun, huh?)

o    Pain down the arms, neck, or into the upper back (Very severe at this time)

o    Weakness (decreased muscle strength, independent of exercise) in the arms or legs

o    Loss of bladder function (yeah, that’s a fun one to admit at 29)

Additional symptoms that may be associated with this disease:

o    Muscle contractions (Check)

o    Rashes (Check)

o    Spasms in or tightness of the leg muscles (Check)

o    Uncoordinated movement (Double check)

Because I have the majority of the symptoms of Syringomyelia and many symptoms that are in addition to these, I am still very concerned that there is much more to this illness than just the SM. I have been unsuccessful in getting into the neurosurgeon of my choice to confirm or deny the existence of Multiple Sclerosis (MS). I have mixed emotions on how I feel about that possibility because, of course, I don’t want to have another affliction that will place me in a wheelchair much more quickly than I wanted; however, with knowledge of what the additional factor could be comes treatment that could possibly help me through this pain and degradation.  Currently there is no cure for Syringomyelia and there likely will never be because of the fact that it is a cyst within one’s spinal cord. I do have faith, though, that even without a cure we can still lead normal lives with the right combination of treatments and medications.

As always, your continued support and concern is greatly appreciated. Thank you all for taking the time to get to know my affliction.