I am looking at the title of this post and hoping that there won't be so many more!!:) Here is the latest:
My neurologist called me Wednesday morning and let me know that he was not comfortable with the MRI that the OB doctor had ordered. He said that as a neurologist that he had never heard of having an MRI on your side and that it would be a very fuzzy picture and that it would not show anything so that basically it would be a waste of time. So, I cancelled the MRI for Thursday morning. Then, the neurologist called me Thursday and asked me to come in that day that he had some tests that he wanted to run. So, we went yesterday afternoon and they were able to do a special MRI with what they called a Lumbar Coil that they wrapped around my body. I felt like I looked like a mummy football player! Anyway, with that around me they were able to tilt me slightly to the left until I could tell that I was not going to pass out. They also gave me oxygen the whole time and I think that really helped me to breathe. So, they did the MRI and were able to get a clear enough picture to know if there was anything they could do surgically to relieve any pressure that may be on the spinal cord from a tumor or a mass of any sort that may be there.
The MRI showed that there was nothing there that he can do surgically to take care of this problem right now. This was disappointing in one way because I had a hope that maybe he would find something simple to give me back the use of my legs. However, the positive side is that if there is nothing they can do surgically, then that means we don't have to make any more hard decisions regarding our little baby and any risks to him.
Then, he said that he wanted to do 2 other tests - a Nerve Conductivity test, and an EMG (electro myo graphy). The nerve test was to test my peripheral nerves (for example, carpel tunnel is not a problem with the spinal cord - it is a problem with the nerve near your wrist). So, I guess there are diseases that affect your peripheral nerves that he needed to check mine. So, they put these silver disks taped over my ankle bone and then wires are connected to a computer and he would hit a button on the computer and my toe would jump. Then he would tape it behind my knee, hit the button and my whole leg would jump. He said that my peripheral nerves were responding but that the message was going down but it was not coming back up. He was not sure why this was. Then, the EMG test is a test where they take about a 2 inch needle and put it in the muscles in your legs at different places and wiggle the needle around and the sound that should come from your muscle sounds like loud radio static. One look at that 2 inch needle being pushed in my leg muscles made me thankful, for the first time, that I had no feeling in my legs!!!:) This test checks to see if your muscles are getting any signals from your central nervous system (your spinal cord). My muscles made no noise at all. So, they are not getting any signals from my spinal cord. He tested the muscles in my back where I can start feeling stuff (above my waist) and the muscle sound was loud and clear. So, the doctor said that proves that something acute happened in the spine at the Lumbar area.
The problem is, that he is not sure what. He said that all the symptoms of what happened on March 12th are classic of a stroke in your spine. He said that everything fits that perfectly. Apparently, pregnancy increases your risk of a stroke and they come in like lightning, do damage, and then be gone. The thing that is confusing to him is because of all the symptoms of 2008. He said a stroke would not happen gradually. He mentioned that something called Guillian Barre could cause all of this but that he couldn't say for sure if that was it because he cannot rule out MS although what happened is very uncommon for MS. I asked him if we could rule out MS and he said no. He said that he needs to do a detailed MRI of my brain and spine as soon as I have the baby. Then, that will help him rule in or rule out some other things. So, he won't say anything for sure. He said that he has to figure out if one thing is causing all of this, or if two different things are going on. He just doesn't know yet. I asked him if we could rule out Lou Gherig's disease yet because that is the one that really scares me. He said that yes, he felt we could rule it out because my muscle sound would have been very loud and that was one thing he was checking on. So, I was very happy to have that ruled out and that was another positive for the day!
So, the million dollar question - do we know if I will walk again? We do not know. The doctor said that with anything that happens to the spinal cord, the longer it takes for you to get any movement or feeling back, the less chance you have of a recovery. I did not ask him straight out if he thought I would walk again because I wasn't in the mood to hear an answer. I thought I had had enough info for one day. I will ask at another time I guess.
I will say this, if you want a good perspective on life, go sit in a neurologists waiting room for about an hour. It is very sobering and makes you thankful for the life you have because there is always someone worse than you.
We are going to change and have the baby at a high risk pregnancy center in Cincinnati. The neuro had talked with the OB doctor there and they said that I am a high risk and that I need to be in a better facility and that OB doctor wants my case and will take me as his patient even though I am already 33 weeks. So, we just have to call and make an appointment which we will do Monday morning.
Our hearts are at peace. Although we know that nothing can be done to help me walk right now, we are relieved that the baby will be safe until it is time for him to be born and we won't have to make any hard decisions concerning him. I feel so calm knowing that my Heavenly Father has all of this in control and is concerned for me and my baby and is leading and guiding us and filling us with His peace.
Hopefully, the next update will not be about me!!! I will update again after I see the new OB doctor in a couple weeks and let you know what he is saying about the baby and delivery plans. I want to thank you again for your prayers. Please keep it up. I love you all!
Friday, June 19, 2009
Tuesday, June 16, 2009
Medical Update #2
I want to thank you all so much for your prayers. I know the Lord is leading us one little step at a time and we are trying to walk in the light that we are give. Sometimes through all of these things with the baby and my health, I get SO frustrated and unsettled about big and little things. It seems the little things have a tendency to frustrate me more than the big things. However, it is during these times that I realize that I am either being shallow, selfish, or full of self-pity and my eyes and focus are not on the Lord but on my circumstances. I do not want to be an individual like this let alone a Christian who should be a testimony of my precious Lord. So, I guess the struggles are good because they make you take a deeper look and provide an opportunity to mature just a little bit more.
We saw the OB doctor yesterday morning and he is very uncomfortable with inducing an earlier than 39 weeks. He understands the neuro's concerns but doesn't want to induce an earlier. I think this is in part because the hospital is really not equipped for an babies that would be born earlier. Also, the baby is still breech so that worries him. He wants me to have another ultrasound to make sure our little fellow is growing like he should. Also, because I am only able to feel the baby with my hands on the outside of my stomach, I am not feeling him move as much as you would in a normal pregnancy so they just want to keep an extra careful eye on him. For this, I am grateful! The OB wanted to consult with a radiologist about the risk it would be to the baby for me to have a cat scan which he thought I could do on my side but that would involve radiation. I am NOT comfortable with that. I don't mind a cat scan for myself but if I were to have one after this baby was born, then I would not take along Briley, Caleb, Isaiah, Audrey and Macey for a free scan with me. So, I do not want to take Elisha along with me (inside of me) for the scan that only I need. So, I told the doctor I wasn't comfortable with that.
They called me this morning and told me that we were going to try to do another MRI at a different facility where I may be able to lay on my side for the procedure. So that is scheduled for Thursday morning at 9:45. We will try it and see what happens. All we know to do is to take one step at a time and pray about each step and try to follow what we think the Lord would want us to do.
We still have much to pray about and more decisions to make but we thank the Lord for the direction that he has given so far. We are also praying about if we just need to go to a larger facility to deliver the baby now that new things have arisen and kist may be too large for this small hospital where we are currently supposed to deliver. So, please help us pray about that and for the Lord to guide us.
Pray for my poor hubby - he is such a wonderful and devoted man. I am not saying this to be bragging in any way, but he really worries and becomes burdened the most over anything that concerns me and he has always been this way - not just since I became sick. So, with the church burdens he carries as a pastor and now the heaviest burden he has ever had to face with me, I know that he always has a lot on his heart and mind and I am asking you to please uphold him in prayer. He never complains and he is always so willing to do anything but it burdens me to see him carry such a huge load. I thank God for him and cannot even begin to imagine what it would be like to go through all of this without this godly man by my side.
I will keep you updated as I know more so that you can pray knowledgeably.
~Alicia
We saw the OB doctor yesterday morning and he is very uncomfortable with inducing an earlier than 39 weeks. He understands the neuro's concerns but doesn't want to induce an earlier. I think this is in part because the hospital is really not equipped for an babies that would be born earlier. Also, the baby is still breech so that worries him. He wants me to have another ultrasound to make sure our little fellow is growing like he should. Also, because I am only able to feel the baby with my hands on the outside of my stomach, I am not feeling him move as much as you would in a normal pregnancy so they just want to keep an extra careful eye on him. For this, I am grateful! The OB wanted to consult with a radiologist about the risk it would be to the baby for me to have a cat scan which he thought I could do on my side but that would involve radiation. I am NOT comfortable with that. I don't mind a cat scan for myself but if I were to have one after this baby was born, then I would not take along Briley, Caleb, Isaiah, Audrey and Macey for a free scan with me. So, I do not want to take Elisha along with me (inside of me) for the scan that only I need. So, I told the doctor I wasn't comfortable with that.
They called me this morning and told me that we were going to try to do another MRI at a different facility where I may be able to lay on my side for the procedure. So that is scheduled for Thursday morning at 9:45. We will try it and see what happens. All we know to do is to take one step at a time and pray about each step and try to follow what we think the Lord would want us to do.
We still have much to pray about and more decisions to make but we thank the Lord for the direction that he has given so far. We are also praying about if we just need to go to a larger facility to deliver the baby now that new things have arisen and kist may be too large for this small hospital where we are currently supposed to deliver. So, please help us pray about that and for the Lord to guide us.
Pray for my poor hubby - he is such a wonderful and devoted man. I am not saying this to be bragging in any way, but he really worries and becomes burdened the most over anything that concerns me and he has always been this way - not just since I became sick. So, with the church burdens he carries as a pastor and now the heaviest burden he has ever had to face with me, I know that he always has a lot on his heart and mind and I am asking you to please uphold him in prayer. He never complains and he is always so willing to do anything but it burdens me to see him carry such a huge load. I thank God for him and cannot even begin to imagine what it would be like to go through all of this without this godly man by my side.
I will keep you updated as I know more so that you can pray knowledgeably.
~Alicia
Saturday, June 13, 2009
Medical Update
First of all, I want to thank each of you for your prayers. I know that the Lord has all things in control and He knows what He is doing, and I am trusting in that, but it sure is a blessed comfort to know that people are praying for me.
As far as the update, I am now 32 weeks pregnant and my OB doctor wanted me to see a neurologist as a consultation to see if there was anything MS-wise that they would need to be on a look-out for, or red flags, during delivery. I had to get a new neurologist to do this, because my old neurologist would not take the insurance that we now have. As we went Monday morning to consult with the neuro about what we thought was just a basic routine procedure to please the OB doctor, we were not even slightly prepared for what he told us.
As he came in and asked a LOT of questions and did a thorough examination, he then told us that although everything that has happened in 2008 is very symptomatic of MS, and he was not saying that I did not have MS, but that me waking up suddenly paralyzed from my waist down was not classic MS. Actually, he said that it can happen but that it is very rare - occurring in only about 3% of the MS population. Because of this fact, he said that he was most uncomfortable with saying that what happened on March 12 was because of MS. He was very disappointed that all medical people have been saying "this is MS, and this is awful, but this is the way it is." He said that although that may be the truth in the end, that he was in no way ready to say that right now and he thinks that something else may have happened on March 12 that is not related to MS. At least, he said that he had to pursue it before he would say it was because of MS.
He said that I needed to have an MRI so that we could see what was going on in my spine. I said, "Okay, as soon as the baby is born we will do that." He said that he really was not comfortable with waiting that long because the longer we wait, the more permanent damage might be done. So that led to the next question of "What could it be?" He listed about 15 things in about 30 seconds of possibilities from a blood clot in the spine to a tumor to bleeding in the spine, I can't even pronounce some of the other things he rattled off. Jimmy asked if my life was in danger and he said that he did not think so because it has been 3 months already. We asked if there was something that he found that was fixable, would that mean surgery and could that be done while I was pregnant? He said that yes, it would mean surgery and that we would have to decide what risk would be greater to us - me possibly never walking again, or the risk it may cause to our baby. This, to me, is an impossible question. He said that they may get in there and see something they can fix, or they may see something that they know they cannot fix, or they may see nothing and then we are right back to square one.
However, he told us that we needed to start with the MRI and he wanted to do one right away so we had one scheduled for last night. We had talked to our OB dr. and asked him if it was a risk to have an MRI and he said that he thought that we should do it. We prayed about it, sought some counsel and felt peace to go ahead with the Dr.'s decisions. We kept praying that the Lord would just keep our little baby safe. So, last night, we went to have the MRI done. To make a long story short, I was not able to have the MRI. If I lay on my back for more than about 5 or 6 minutes I begin to pass out. I have known this to be true at home in my own bed, so I was worried that I could make it through the MRI. I told the radiologist this and so she knew that it was a potential problem. Well, sure enough, I started passing out and I hadn't even been in there for 5 minutes and the whole procedure was to take an hour. The radiologist said that the baby is laying on my aorta and cutting off the blood supply to me and the baby and she did not want us to proceed any farther. I agreed knowing that I would just go in and pass out again. So, now we are not sure what will happen next.
The neurologist will want me to be induced early but we are not sure what the OB will think about it. I will talk to the neuro early Monday morning and I have an appointment with the OB on Monday at 10:30 a.m. Since we will be talking about inducing me early, we have to decide what the risk will be to the baby as compared to a chance they may end up finding that nothing can be done at all. If they decided for me to have the baby, I will have to change all plans on where to deliver as the hospital I was planning on delivering at is not equipped for early babies. This will mean another new doctor.
This has all been an emotional roller coaster for me - especially since I am not an emotional girl! I cannot stand the thought of bettering myself if it would hurt the baby. I don't think I could live with the guilt. On the other hand, if there is a chance for me to walk again, and I feel like the new neuro has given some hope, then I would be so very excited. I am afraid to get excited though for fear it won't happen and then I will have to deal with the major disappointment.
Having said all of this, we know that our lives and the life of our baby boy is in the Lord's hands. The very fact that I was passing out on the MRI table last night, was helpful and comforting to me. How? Because we had the green light from all the doctors, and we even felt peace about proceeding and we still feel like we made the right decision to get the MRI, but in the midst of all that, we know the Lord was looking out for us and the baby. Even though we felt a go-ahead about it, we have been praying that the Lord would keep the baby safe, and apparently He stopped the MRI in His own way. This is a comfort because it just reassured once more that He is in control and even in the last minute, He will make His way known. This is a comfort because there may be many more hard decisions to have to make, but the Lord knows our hearts and that we are seeking His face, and we know that He will take care of everything - no matter how everything turns out - it will be according to His will.
This has calmed my heart and I do not fear what decisions may have to be made. We do covet your prayers on our behalf. We KNOW that people are praying and I cannot thank you enough. Please keep it up and know that we love each of you and thank God for you being in our lives.
As far as the update, I am now 32 weeks pregnant and my OB doctor wanted me to see a neurologist as a consultation to see if there was anything MS-wise that they would need to be on a look-out for, or red flags, during delivery. I had to get a new neurologist to do this, because my old neurologist would not take the insurance that we now have. As we went Monday morning to consult with the neuro about what we thought was just a basic routine procedure to please the OB doctor, we were not even slightly prepared for what he told us.
As he came in and asked a LOT of questions and did a thorough examination, he then told us that although everything that has happened in 2008 is very symptomatic of MS, and he was not saying that I did not have MS, but that me waking up suddenly paralyzed from my waist down was not classic MS. Actually, he said that it can happen but that it is very rare - occurring in only about 3% of the MS population. Because of this fact, he said that he was most uncomfortable with saying that what happened on March 12 was because of MS. He was very disappointed that all medical people have been saying "this is MS, and this is awful, but this is the way it is." He said that although that may be the truth in the end, that he was in no way ready to say that right now and he thinks that something else may have happened on March 12 that is not related to MS. At least, he said that he had to pursue it before he would say it was because of MS.
He said that I needed to have an MRI so that we could see what was going on in my spine. I said, "Okay, as soon as the baby is born we will do that." He said that he really was not comfortable with waiting that long because the longer we wait, the more permanent damage might be done. So that led to the next question of "What could it be?" He listed about 15 things in about 30 seconds of possibilities from a blood clot in the spine to a tumor to bleeding in the spine, I can't even pronounce some of the other things he rattled off. Jimmy asked if my life was in danger and he said that he did not think so because it has been 3 months already. We asked if there was something that he found that was fixable, would that mean surgery and could that be done while I was pregnant? He said that yes, it would mean surgery and that we would have to decide what risk would be greater to us - me possibly never walking again, or the risk it may cause to our baby. This, to me, is an impossible question. He said that they may get in there and see something they can fix, or they may see something that they know they cannot fix, or they may see nothing and then we are right back to square one.
However, he told us that we needed to start with the MRI and he wanted to do one right away so we had one scheduled for last night. We had talked to our OB dr. and asked him if it was a risk to have an MRI and he said that he thought that we should do it. We prayed about it, sought some counsel and felt peace to go ahead with the Dr.'s decisions. We kept praying that the Lord would just keep our little baby safe. So, last night, we went to have the MRI done. To make a long story short, I was not able to have the MRI. If I lay on my back for more than about 5 or 6 minutes I begin to pass out. I have known this to be true at home in my own bed, so I was worried that I could make it through the MRI. I told the radiologist this and so she knew that it was a potential problem. Well, sure enough, I started passing out and I hadn't even been in there for 5 minutes and the whole procedure was to take an hour. The radiologist said that the baby is laying on my aorta and cutting off the blood supply to me and the baby and she did not want us to proceed any farther. I agreed knowing that I would just go in and pass out again. So, now we are not sure what will happen next.
The neurologist will want me to be induced early but we are not sure what the OB will think about it. I will talk to the neuro early Monday morning and I have an appointment with the OB on Monday at 10:30 a.m. Since we will be talking about inducing me early, we have to decide what the risk will be to the baby as compared to a chance they may end up finding that nothing can be done at all. If they decided for me to have the baby, I will have to change all plans on where to deliver as the hospital I was planning on delivering at is not equipped for early babies. This will mean another new doctor.
This has all been an emotional roller coaster for me - especially since I am not an emotional girl! I cannot stand the thought of bettering myself if it would hurt the baby. I don't think I could live with the guilt. On the other hand, if there is a chance for me to walk again, and I feel like the new neuro has given some hope, then I would be so very excited. I am afraid to get excited though for fear it won't happen and then I will have to deal with the major disappointment.
Having said all of this, we know that our lives and the life of our baby boy is in the Lord's hands. The very fact that I was passing out on the MRI table last night, was helpful and comforting to me. How? Because we had the green light from all the doctors, and we even felt peace about proceeding and we still feel like we made the right decision to get the MRI, but in the midst of all that, we know the Lord was looking out for us and the baby. Even though we felt a go-ahead about it, we have been praying that the Lord would keep the baby safe, and apparently He stopped the MRI in His own way. This is a comfort because it just reassured once more that He is in control and even in the last minute, He will make His way known. This is a comfort because there may be many more hard decisions to have to make, but the Lord knows our hearts and that we are seeking His face, and we know that He will take care of everything - no matter how everything turns out - it will be according to His will.
This has calmed my heart and I do not fear what decisions may have to be made. We do covet your prayers on our behalf. We KNOW that people are praying and I cannot thank you enough. Please keep it up and know that we love each of you and thank God for you being in our lives.
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