Other moms with serious medical issues?..long

I was just wondering if there are any other twin moms that have serious medical issues? I was diagnosed 3 years ago this May when I was 24 years old with 2 very rare medical conditions. The first was Syringomyelia or SM. It is a lesion in the center of the spinal cord that progresses with time and will eventually leave me either paralized from the neck down or death. (I know not that great, huh) And the other was Chiari Malformation or ACM or CM. It is a malformation of the base of my skull that doesnt allow enough room for my brain so my brain falls into my spinal column blocking cerebral spinal fluid. This is what caused my SM. They believe it is a birth defect and possibly genetic, but havent found a gene yet. I am not sure if my DD's have it but I did tons of research before becoming pregnant and some experts in the field of CM/SM believe that folic acid might prevent it so I doubled the recommended dose so hopefully, my girls dont have it. I also have Degenerative Disc Disease in my neck, Cervical Kyphosis (curve in the neck) and scolosis in my back. CM and SM are very rare. Only about 200,000 cases worldwide.

SM causes many problems similiar to MS. I have alot of weakness in my legs/arms/hands/feet, alot of pain mainly in my legs and back, severe headaches daily, vision problems, numbness/tingling in my hands and feet, and the list goes on. There is no cure, only brain surgery to try and stop the progression. I had the surgery 2 1/2 years ago. They removed an 1 1/2" of my skull, shaved my C1 vertebra in my neck, and opened my dura (hard outer layer covering the brain) and replaced with a piece of my own tissue. Unfornuately it didnt work and I am still progressing.

My DH and I weighed the thought of children for a few years b/c we just didnt know what to do. I didnt want to pass it on, we werent sure how well I could carry a baby, and care for baby once born. After a while I decided that if I didnt have children I would regret it forever so we decided to have a baby. Who knew we would have 2!! My pregnancy was actually a life saver. My first trimester was rough, my headaches were horrible, I was in bed most of the time but after that, my symptoms all disappeared and have been better since giving birth. This past week has been pretty rough, I hope that it is just the weather and not the disease progressing again

Caring for the twins is really hard for me to do but somehow I manage. I know without them, some days I wouldnt make it out of bed but with them, I know I have to. They are worth every bit of everything I go through daily battling this disease. The only part that tears my heart out is knowing that they are going to have to watch their mother suffer from this awful disease. It is a slow, painful disease that no one should have to deal with, let alone watch a loved one with it....

Anyways, sorry for the long thread. Just curious if there are any other moms of twins out there with serious medical issues, yet we still find it in us to raise these beautiful babies.

 

I was just wondering if there are any other twin moms that have serious medical issues? I was diagnosed 3 years ago this May when I was 24 years old with 2 very rare medical conditions. The first was Syringomyelia or SM. It is a lesion in the center of the spinal cord that progresses with time and will eventually leave me either paralized from the neck down or death. (I know not that great, huh) And the other was Chiari Malformation or ACM or CM. It is a malformation of the base of my skull that doesnt allow enough room for my brain so my brain falls into my spinal column blocking cerebral spinal fluid. This is what caused my SM. They believe it is a birth defect and possibly genetic, but havent found a gene yet. I am not sure if my DD's have it but I did tons of research before becoming pregnant and some experts in the field of CM/SM believe that folic acid might prevent it so I doubled the recommended dose so hopefully, my girls dont have it. I also have Degenerative Disc Disease in my neck, Cervical Kyphosis (curve in the neck) and scolosis in my back. CM and SM are very rare. Only about 200,000 cases worldwide.

SM causes many problems similiar to MS. I have alot of weakness in my legs/arms/hands/feet, alot of pain mainly in my legs and back, severe headaches daily, vision problems, numbness/tingling in my hands and feet, and the list goes on. There is no cure, only brain surgery to try and stop the progression. I had the surgery 2 1/2 years ago. They removed an 1 1/2" of my skull, shaved my C1 vertebra in my neck, and opened my dura (hard outer layer covering the brain) and replaced with a piece of my own tissue. Unfornuately it didnt work and I am still progressing.

My DH and I weighed the thought of children for a few years b/c we just didnt know what to do. I didnt want to pass it on, we werent sure how well I could carry a baby, and care for baby once born. After a while I decided that if I didnt have children I would regret it forever so we decided to have a baby. Who knew we would have 2!! My pregnancy was actually a life saver. My first trimester was rough, my headaches were horrible, I was in bed most of the time but after that, my symptoms all disappeared and have been better since giving birth. This past week has been pretty rough, I hope that it is just the weather and not the disease progressing again

Caring for the twins is really hard for me to do but somehow I manage. I know without them, some days I wouldnt make it out of bed but with them, I know I have to. They are worth every bit of everything I go through daily battling this disease. The only part that tears my heart out is knowing that they are going to have to watch their mother suffer from this awful disease. It is a slow, painful disease that no one should have to deal with, let alone watch a loved one with it....

Anyways, sorry for the long thread. Just curious if there are any other moms of twins out there with serious medical issues, yet we still find it in us to raise these beautiful babies.

 

Oh wow, Im so sorry you have to go through this all. I just wanted to pass along prayers to you and your family I really admire your strength to care for your children with that is on your plate

 

First off, I am so sorry that you are going through all these health issues and second, you are one strong lady! You should be very proud of all you have done despite your health problems.

 

First of all to you!! You are one very strong lady to cope with all that and your babies. I dont know if you would class this as a serious medical issue but i have epilepsy that is brought on by lack of sleep(not very good when you have twins that are 9.5months and still not sleeping through the night properly!) I had only ever had 2 fits in 7 years before i had the babies and now since the babies have been home i have had at least 6 that i know of. There is the constant worry that i am going to have a fit and drop one of them or hurt one of them. It scares me half to death sometimes. But like you i just get on with it and try not to let the worry take over me! Just enjoy your babies just now and take each day at a time, you never know what tomorrow will bring x
P.S your babies are gorgeous!!!

 

Sounds like you are a strong lady. Big Hugs and Prayers for you!

 

Sorry to hear of your condition. I can relate to be scared and dropping your children. My arms sometimes give out and I have balance issues and it does make you a little nervous. We have a superyard and everytime I lean over I am afraid that I am going to lose my balance... I just try to move slow and I really have to think about how to sit my kids down. I know that sounds crazy but you know...

Thanks for the kind words. I have dealt with my condition, as well as I can. I belong to a wonderful support site and the people are great. Without them, I wouldnt be were I am today. I know everyone on there thinks that I am crazy b/c I chose to be unmedicated. Most people are on many different types of meds to control this and that, mostly the pain. I decided before I got pregnant to stop all meds for that babies sake, then after they were born, I decided that I wanted a clear head to care for them. The meds that they usually want us to take are very strong and most make me feel like I am drunk or they wipe me out.