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.

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