Tuesday, April 23, 2013
I would like to address why I mentioned the PFP or bladder prolapse in my last post. Before I ever got pregnant, I went to a specialist in Ehlers Danlos. I have both Mitral and Tricuspid Valve prolapse, with very visible veins through my skin. My father died from heart related issues in his mid 40's which he was plagued with since childhood. Many Chiarians are aware that EDS and Chiari can co-exist. I was concerned about the vascular form due to my history. The expert basically told me that without genetic testing, he could only speculate. His opinion was that I most likely do not have EDS, or if I do it is very mild, and to continue on with my life plans. My point... bladder prolapse could be a result of EDS (weakened connective tissue). Of course women have this issue who do not have EDS. I did just have my third child! But, given this forum, I thought it pertinent to mention. As with every single symptom we deal with on a daily basis, it is a guess as to the origin: I feel nauseous today. Is it Chiari or did I eat something bad, or perhaps I have the beginnings of a migraine, maybe its an ulcer...
Posted by Lori at 1:50 PM
Wednesday, April 17, 2013
Finally, a moment of peace! I thought I would catch this puppy up and apologize to anyone that did not receive a response from me. I have been in a baby fog. My son was born on Nov. 21, 2012 (day before Thanksgiving) in a very dramatic and harrowing ordeal. We are both fine now (sort of). Anyway, he ended up being a very colicky baby. My husband works 12 hour days with an additional 2 hour commute. Having just moved right before falling preggo, I have no family or friends to help. I was alone. The first 3-4 months sucked!! I am not exactly a spring chicken anymore! Finally, my pediatrician put him on Zantac and told me to stop all dairy as I am breastfeeding. It has been a total game changer! I have a whole new son :)) So I have spent the last 3 weeks catching up on sleep (as we all know, chiarians need more sleep than the average bear) and am ready to take this blog on again. I still have an enormous amount of responsibility outside of this so please be patient and make sure that you read the whole blog, as most questions are answered within. I just wanted to send my love out to all those searching for answers. This is a hard road and if my blog can help at least start the conversation about alternatives to the caveman hatchet surgery still barbarically performed on many unnecessarily, then I am a very happy woman! My Chiari after baby... Spring is here in Indiana; always a bitch. I have headaches at least 3 times a week. I cannot take my Axert, which always seemed to help, due to nursing Z (my son). I am relying heavily on Tylenol and, at its worst, 800mg Ibuprofen. So far it has worked alright. The only other real crapper is that I had pelvic floor prolapse of my bladder. That is so awful! I cannot even believe I am admitting this on a public forum. It is embarrassing and almost shameful. Definitely something women do not talk about. But, as a chiarian, I know you all are quite use to embarrassing topics in regards to our bodies. Besides, I want to take some of the shame out of prolapses. My doc put me on estrogen cream and it has done wonders. I guess breastfeeding sends you into a false menopause causing low estrogen. She said that most likely I will make a really nice recovery once I stop. Good to know. Well, have to run. I hope the fact that I have been off living my life is a source of inspiration for anyone out there wondering if they will ever be normal again. The key to chronic pain is positive thinking. Definitely not easy but, if you can master your mind, you can live past the pain :) Much love, Lori
Posted by Lori at 7:16 AM
Tuesday, July 17, 2012
I am the absolute worst at communication, so I apologize for the delay in information. A lot has happened in seven months. First, I do not have EDS or if I do it is very mild according to the South Bend doc. This information allowed me to continue on with my plans for pregnancy. My husband and I were to start Clomid (fertility drug) in March but God stepped in and saved us the expense. I am currently 21 weeks pregnant with a little boy!! I am so excited!!! I already have two girls through a previous relationship and relish the idea of a son. My hubby is over the moon :) We are calling him our "little monster" since he has always measured about a week ahead of schedule. It has been a blast finding monster themed clothing and nursery items. This has not been the easiest pregnancy but, then again, I am a good decade older than I was the last time I was with child (my youngest will be 12 next month and my eldest will be 18 in 2 1/2 months). I cannot remember if I ever blogged about all of the losses my husband and I endured before this baby. It pretty much tore our marriage apart and we separated for awhile three years ago. But found our way back to each other after six months and we are stronger than ever! We decided that we would try one more time before my bio clock ticked out; if it didn't work then we lived out our lives without regret. Well, it worked! I have been exhausted but regulating my hashimoto's (thyroid disease) has been a challenge. I think I slept through the first four months. Then there is the heart issue. It drives me bonkers. I can feel it flopping around on me in there. It never feels like I have enough oxygen. Finally, there are the headaches. They are almost daily. Some feel very Chiari-like in nature. Some just feel like migraines (which we all know can be the Chiari manifesting in a sneaky way). I truly cannot distinguish between preexisting health problems, pregnancy and just plain old age related issues. I think they are blending together into this triad of trouble for my poor abused and battered body :P As a side note: I have seen a high risk doc down in Indy with an impressive resume. He seems to think that there is no reason I cannot give birth vaginally. I had both kids fairly quickly and he thinks that if I "labor down" I will only have to push a couple of times and that should not have any effect on my already decompressed Chiari. I should preface this with the fact that I have little to no problems with valsulva maneuvers as long as they are not too prolonged. My OBGYN concurs. My original Cleveland Clinic doc, Dr. Di, is no longer there so I could not ask his opinion but I did get the opinion of his boss which was general anesthesia with C-Section. Keep in mind that this is not commonplace for him since he is the pediatric neurosurgeon and they tend not to have pregnancy concerns. For me, this seems like a very archaic way of thinking. There have been studies, although very very small, that tell a different story in regards to birth and Chiari. Dr. Oro's nurse has a report on the Web of one which demonstrates women having vaginal and epidural births with fantastic outcomes. There are also studies by TCI which say pretty much the same thing although they break it down even further. According to TCI, if you had a small herniation that has been successfully treated and do not have a syrinx, you can attempt a vaginal birth relatively safely. They do however recommend a CINE MRI at 35 weeks to ensure adequate CSF flow before committing to a delivery method. I have not decided if I will have the CINE. I am happy and that is what matters right now. I love my husband. I love my girls. And I love my little monster :))) I wish everyone health, prosperity and a pain free existence!
Posted by Lori at 6:54 AM