Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 Oh where to start. I was born with spina bifida and a double tethered cord. My pedi never found it. I had a skin tag near my butt crack and no other mark. I never had any symptoms growing up except some kidney stones. I had a perfectly happy healthy child hood. When I was 23 I got hurt at work and then my back went down hill and I had my first surgery. Was good for a year but now back in pain. At 9-10 months my advice is if you waited this long wait a little bit longer. If she hadn't had any bowel or bladder issues don't mess with what's not broken. Once you start surgeries shell will most likely have many more. Wait till she 12+ see if she walks fine etc. Waiting a few months might make all the difference if I went 23 years she might be able to too. My dr said if I hadn't aggravated it lifting 300lbs I might have never knew I had it and might have never needed surgery! This message was sent from s' iPhone. Apologies if it does not format corectly. > Hi! My name is Martha and my 10 mos old daughter will be going in for surgery for a tethered spinal cord at Duke on 4/18. We are very nervous but very hopeful too! I just wanted to tell you a little about her condition and our story and if anyone wants to chime in with info, advice, anything... we would greatly appreciate it. It is nice to have support like this when no one I KNOW truly understands the situation at hand. > > Kennedy was born with a large, bright strawberry on her low spine. She was in the special care unit when she was born because of a high temperature and low blood pressure likely because of a very long labor. I was able to see her AFTER having manual removal of my placenta (ouch)! She stayed in the special care unit until our discharges two days later. I asked her nurses and doctors about the spot but no one seemed concern. Later, at her pediatrician appts, I often asked about the spot, only to be told it was a hemangioma and would go away. > > I later noticed a hole (now to be known as the dimple). It was easily seen if you just slightly pull on one cheek to separate the crack. I just thought it was cute. I didn't know anything. > > Later, my husband got a new job in a new town and we got a new pediatrician with the move. At her 9-month appt, she was immediately concerned about the strawberry because it had a slight fatty pouch. She quickly looked for the other markers (dimple and deviated buttcrack) and referred us for a MRI. In under a month, we found out she has a tethered spinal cord (both lipomyelomeningocele and fatty filum terminale) and will be needing surgery. Dr. Fuchs at Duke Childrens Hospital is her physician. > > ***Sorry to be lengthy. We've been told to expect for her to stay in the hospital 6-7 days after surgery because of her type of tether and likely be out of daycare 2-3 weeks after. > > My frustration with the hospital pediatricians from her birth and her first pediatrician in our old town and their lack of care in this matter is growing and I'm not sure if there's anything I can do. Additionally, I'm VERY scared at the potential costs of this entire scenario. We have good insurance but we already pay $600/mos for it and received $500 in bills alone last week from the MRI (with more to come I'm sure and many more after surgery and our lengthy stay). > > Do children born with this condition qualify for anything financially that can help us? Medicaid? SSI? My husband and I are both teachers and see that this might take us FOREVER to pay off. Is there any assistance out there? How does the Mc House work? > > Is this condition something that we could see again if we want another child in the future? Has anyone had this surgery at Duke and/or had Dr. Fuchs? Any info anyone can provide to help us at this point would be MORE than appreciated. Thank you. *Martha & family > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 Hi Martha My name is Corinn and I have a now five and a half year old who wasn't diagnosed until she was 2!! I live in Boston which is supposed to be the Mecca of all hospitals and yet although my daughter showed symptoms and had a dimple no one even checked until she was 2.My daughter whose name is Amani has undergone three untethering surgeries. Because of this delay she has suffered some extensive permanent damage and I now take her to the world famous Dr. Ben Carson at s Hopkins hospital in land. I have become very knowledgeable about this condition as it has over taken my daughter and my life. I am very glad that you found a doctor who recognized this and your daughter is receiving help!! Even if it was a by chance situation. your daughter will be in pain after and will have to lay completely flat for 24-48 hours after but the pain medication will help with that and trust me she won't be addicted( the pain Meds are narcotics) she will then slowly sit up over the coarse of a day or two increasing her level ten degrees every hour. After that she will have to stand to put pressure on her feet and make sure all neurological function is in tact. Where Kennedy probably doesn't walk yet they will probably take other measures rather than walking to make sure her movement is in tact. I know how frightening this can be and how unsettled you feel but trust me kids are resilient and your baby girl will recover faster than you'll believe. Although she has to stay out of daycare for a few weeks she won't be laid up it's just as a precaution for the incision. I hope this helped some and honestly if you have any questions what so ever PLEASE feel free to ask me no matter what. I am more than willing to answer or help in anyway. I'm a single mom and I k ow how hard and frustrating as well as scary all of this is. I'll be praying for you all and wish little Kennedy a speedy recovery!! > Hi! My name is Martha and my 10 mos old daughter will be going in for surgery for a tethered spinal cord at Duke on 4/18. We are very nervous but very hopeful too! I just wanted to tell you a little about her condition and our story and if anyone wants to chime in with info, advice, anything... we would greatly appreciate it. It is nice to have support like this when no one I KNOW truly understands the situation at hand. > > Kennedy was born with a large, bright strawberry on her low spine. She was in the special care unit when she was born because of a high temperature and low blood pressure likely because of a very long labor. I was able to see her AFTER having manual removal of my placenta (ouch)! She stayed in the special care unit until our discharges two days later. I asked her nurses and doctors about the spot but no one seemed concern. Later, at her pediatrician appts, I often asked about the spot, only to be told it was a hemangioma and would go away. > > I later noticed a hole (now to be known as the dimple). It was easily seen if you just slightly pull on one cheek to separate the crack. I just thought it was cute. I didn't know anything. > > Later, my husband got a new job in a new town and we got a new pediatrician with the move. At her 9-month appt, she was immediately concerned about the strawberry because it had a slight fatty pouch. She quickly looked for the other markers (dimple and deviated buttcrack) and referred us for a MRI. In under a month, we found out she has a tethered spinal cord (both lipomyelomeningocele and fatty filum terminale) and will be needing surgery. Dr. Fuchs at Duke Childrens Hospital is her physician. > > ***Sorry to be lengthy. We've been told to expect for her to stay in the hospital 6-7 days after surgery because of her type of tether and likely be out of daycare 2-3 weeks after. > > My frustration with the hospital pediatricians from her birth and her first pediatrician in our old town and their lack of care in this matter is growing and I'm not sure if there's anything I can do. Additionally, I'm VERY scared at the potential costs of this entire scenario. We have good insurance but we already pay $600/mos for it and received $500 in bills alone last week from the MRI (with more to come I'm sure and many more after surgery and our lengthy stay). > > Do children born with this condition qualify for anything financially that can help us? Medicaid? SSI? My husband and I are both teachers and see that this might take us FOREVER to pay off. Is there any assistance out there? How does the Mc House work? > > Is this condition something that we could see again if we want another child in the future? Has anyone had this surgery at Duke and/or had Dr. Fuchs? Any info anyone can provide to help us at this point would be MORE than appreciated. Thank you. *Martha & family > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 Sorry I also meant to tell you that the Mc house is great!! They are very supportive and they make sure to make it their priority to make you comfortable and take whatever areas off of you during your stay. As far as the financial piece I know the struggle. I pay for Amani's healthcare out of pocket as I am unemployed due to her need for care. I have true ssi a few rimes but its been denied but every state is different so I would give it a try. You can also try your local spina bifida Association because depending on how large it is and what they receive For donations they can help you with some reimbursements. Hope this info helped you out some and Again I'm willing to help in anyway if you think of something I may not have answered please don't hesitate to ask. I'm sure I can get you an answer! > Hi! My name is Martha and my 10 mos old daughter will be going in for surgery for a tethered spinal cord at Duke on 4/18. We are very nervous but very hopeful too! I just wanted to tell you a little about her condition and our story and if anyone wants to chime in with info, advice, anything... we would greatly appreciate it. It is nice to have support like this when no one I KNOW truly understands the situation at hand. > > Kennedy was born with a large, bright strawberry on her low spine. She was in the special care unit when she was born because of a high temperature and low blood pressure likely because of a very long labor. I was able to see her AFTER having manual removal of my placenta (ouch)! She stayed in the special care unit until our discharges two days later. I asked her nurses and doctors about the spot but no one seemed concern. Later, at her pediatrician appts, I often asked about the spot, only to be told it was a hemangioma and would go away. > > I later noticed a hole (now to be known as the dimple). It was easily seen if you just slightly pull on one cheek to separate the crack. I just thought it was cute. I didn't know anything. > > Later, my husband got a new job in a new town and we got a new pediatrician with the move. At her 9-month appt, she was immediately concerned about the strawberry because it had a slight fatty pouch. She quickly looked for the other markers (dimple and deviated buttcrack) and referred us for a MRI. In under a month, we found out she has a tethered spinal cord (both lipomyelomeningocele and fatty filum terminale) and will be needing surgery. Dr. Fuchs at Duke Childrens Hospital is her physician. > > ***Sorry to be lengthy. We've been told to expect for her to stay in the hospital 6-7 days after surgery because of her type of tether and likely be out of daycare 2-3 weeks after. > > My frustration with the hospital pediatricians from her birth and her first pediatrician in our old town and their lack of care in this matter is growing and I'm not sure if there's anything I can do. Additionally, I'm VERY scared at the potential costs of this entire scenario. We have good insurance but we already pay $600/mos for it and received $500 in bills alone last week from the MRI (with more to come I'm sure and many more after surgery and our lengthy stay). > > Do children born with this condition qualify for anything financially that can help us? Medicaid? SSI? My husband and I are both teachers and see that this might take us FOREVER to pay off. Is there any assistance out there? How does the Mc House work? > > Is this condition something that we could see again if we want another child in the future? Has anyone had this surgery at Duke and/or had Dr. Fuchs? Any info anyone can provide to help us at this point would be MORE than appreciated. Thank you. *Martha & family > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 As far as your insurance since both of you are teachers and I am assuming you might have the same coverage. If you do you may have what they call dual coverage which if you both have a family plan that the school covers. Then what your ins does not cover the other will. They should bill both insurance under yours and his and see what they do. you may want to hold off paying it for now. Find out how much your deductables are for each and family. Say, it is 500 deductable that you have to pay before the insurance starts to pay then ins pays80% and you 20% to a max of $1000 or $5,000 out of pocket per calender year depending on your insurance plan. Then that would be the absolute max out of pocket you should have and then you can at least plan and make payment arrangements with the doctors and hospitals.  Then again with both of you working and with both ins that may be less or not that much. Hopefully this will be your situation. Need to check it out.  You may ask for a social worker from the hospital and they should be able to guide you too for assistance programs from your state. From what I have been told about the ronald mcdonalds house is that they are great! Very reasonable rates. Something like $10-$20/day. So it is doable. This is something the hospital should be able to help you too. You may want to ask Dr. Fuchs office to have the hospital call you with all this. You are somewhat lucky that your new peds was on top of it and referred her for a mri immediately. Carol ________________________________ To: " tetheredspinalcord " <tetheredspinalcord > Sent: Tue, April 5, 2011 7:41:50 PM Subject: Re: Intro to Group  Sorry I also meant to tell you that the Mc house is great!! They are very supportive and they make sure to make it their priority to make you comfortable and take whatever areas off of you during your stay. As far as the financial piece I know the struggle. I pay for Amani's healthcare out of pocket as I am unemployed due to her need for care. I have true ssi a few rimes but its been denied but every state is different so I would give it a try. You can also try your local spina bifida Association because depending on how large it is and what they receive For donations they can help you with some reimbursements. Hope this info helped you out some and Again I'm willing to help in anyway if you think of something I may not have answered please don't hesitate to ask. I'm sure I can get you an answer! > Hi! My name is Martha and my 10 mos old daughter will be going in for surgery >for a tethered spinal cord at Duke on 4/18. We are very nervous but very hopeful >too! I just wanted to tell you a little about her condition and our story and if >anyone wants to chime in with info, advice, anything... we would greatly >appreciate it. It is nice to have support like this when no one I KNOW truly >understands the situation at hand. > > Kennedy was born with a large, bright strawberry on her low spine. She was in >the special care unit when she was born because of a high temperature and low >blood pressure likely because of a very long labor. I was able to see her AFTER >having manual removal of my placenta (ouch)! She stayed in the special care unit >until our discharges two days later. I asked her nurses and doctors about the >spot but no one seemed concern. Later, at her pediatrician appts, I often asked >about the spot, only to be told it was a hemangioma and would go away. > > I later noticed a hole (now to be known as the dimple). It was easily seen if >you just slightly pull on one cheek to separate the crack. I just thought it was >cute. I didn't know anything. > > Later, my husband got a new job in a new town and we got a new pediatrician >with the move. At her 9-month appt, she was immediately concerned about the >strawberry because it had a slight fatty pouch. She quickly looked for the other >markers (dimple and deviated buttcrack) and referred us for a MRI. In under a >month, we found out she has a tethered spinal cord (both lipomyelomeningocele >and fatty filum terminale) and will be needing surgery. Dr. Fuchs at Duke >Childrens Hospital is her physician. > > ***Sorry to be lengthy. We've been told to expect for her to stay in the >hospital 6-7 days after surgery because of her type of tether and likely be out >of daycare 2-3 weeks after. > > My frustration with the hospital pediatricians from her birth and her first >pediatrician in our old town and their lack of care in this matter is growing >and I'm not sure if there's anything I can do. Additionally, I'm VERY scared at >the potential costs of this entire scenario. We have good insurance but we >already pay $600/mos for it and received $500 in bills alone last week from the >MRI (with more to come I'm sure and many more after surgery and our lengthy >stay). > > > Do children born with this condition qualify for anything financially that can >help us? Medicaid? SSI? My husband and I are both teachers and see that this >might take us FOREVER to pay off. Is there any assistance out there? How does >the Mc House work? > > Is this condition something that we could see again if we want another child in >the future? Has anyone had this surgery at Duke and/or had Dr. Fuchs? Any info >anyone can provide to help us at this point would be MORE than appreciated. >Thank you. *Martha & family > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 Hi Martha. : ) Congrats on the birth of your daughter! I don't think my friend Allie is on this group, but if I remember right, she used Dr. Fuchs for her son's detethering. If you'd like me to confirm that and ask her if I can give you her email address, I will. I'm sure she would love to talk with you. : ) Stacey mom to Sofia age 5, VACTERL > > > Hi! My name is Martha and my 10 mos old daughter will be going in for surgery for a tethered spinal cord at Duke on 4/18. We are very nervous but very hopeful too! I just wanted to tell you a little about her condition and our story and if anyone wants to chime in with info, advice, anything... we would greatly appreciate it. It is nice to have support like this when no one I KNOW truly understands the situation at hand. > > > > Kennedy was born with a large, bright strawberry on her low spine. She was in the special care unit when she was born because of a high temperature and low blood pressure likely because of a very long labor. I was able to see her AFTER having manual removal of my placenta (ouch)! She stayed in the special care unit until our discharges two days later. I asked her nurses and doctors about the spot but no one seemed concern. Later, at her pediatrician appts, I often asked about the spot, only to be told it was a hemangioma and would go away. > > > > I later noticed a hole (now to be known as the dimple). It was easily seen if you just slightly pull on one cheek to separate the crack. I just thought it was cute. I didn't know anything. > > > > Later, my husband got a new job in a new town and we got a new pediatrician with the move. At her 9-month appt, she was immediately concerned about the strawberry because it had a slight fatty pouch. She quickly looked for the other markers (dimple and deviated buttcrack) and referred us for a MRI. In under a month, we found out she has a tethered spinal cord (both lipomyelomeningocele and fatty filum terminale) and will be needing surgery. Dr. Fuchs at Duke Childrens Hospital is her physician. > > > > ***Sorry to be lengthy. We've been told to expect for her to stay in the hospital 6-7 days after surgery because of her type of tether and likely be out of daycare 2-3 weeks after. > > > > My frustration with the hospital pediatricians from her birth and her first pediatrician in our old town and their lack of care in this matter is growing and I'm not sure if there's anything I can do. Additionally, I'm VERY scared at the potential costs of this entire scenario. We have good insurance but we already pay $600/mos for it and received $500 in bills alone last week from the MRI (with more to come I'm sure and many more after surgery and our lengthy stay). > > > > Do children born with this condition qualify for anything financially that can help us? Medicaid? SSI? My husband and I are both teachers and see that this might take us FOREVER to pay off. Is there any assistance out there? How does the Mc House work? > > > > Is this condition something that we could see again if we want another child in the future? Has anyone had this surgery at Duke and/or had Dr. Fuchs? Any info anyone can provide to help us at this point would be MORE than appreciated. Thank you. *Martha & family > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2011 Report Share Posted April 7, 2011 That would be wonderful Stacey if you don't mind! thank you for your responses, to everyone. Unfortunately, my insurance doesn't seem quite as good as yours. My daughter is actually only on one insurance, it's not set up the way some of you have suggested or wondered, but I wish it was. But thank you for those ideas! We head in for pre-op today as well as another appt with Dr. Fuchs. I've got to get all of my questions written down! Thank you for the support everyone! Martha > > > > > Hi! My name is Martha and my 10 mos old daughter will be going in for surgery for a tethered spinal cord at Duke on 4/18. We are very nervous but very hopeful too! I just wanted to tell you a little about her condition and our story and if anyone wants to chime in with info, advice, anything... we would greatly appreciate it. It is nice to have support like this when no one I KNOW truly understands the situation at hand. > > > > > > Kennedy was born with a large, bright strawberry on her low spine. She was in the special care unit when she was born because of a high temperature and low blood pressure likely because of a very long labor. I was able to see her AFTER having manual removal of my placenta (ouch)! She stayed in the special care unit until our discharges two days later. I asked her nurses and doctors about the spot but no one seemed concern. Later, at her pediatrician appts, I often asked about the spot, only to be told it was a hemangioma and would go away. > > > > > > I later noticed a hole (now to be known as the dimple). It was easily seen if you just slightly pull on one cheek to separate the crack. I just thought it was cute. I didn't know anything. > > > > > > Later, my husband got a new job in a new town and we got a new pediatrician with the move. At her 9-month appt, she was immediately concerned about the strawberry because it had a slight fatty pouch. She quickly looked for the other markers (dimple and deviated buttcrack) and referred us for a MRI. In under a month, we found out she has a tethered spinal cord (both lipomyelomeningocele and fatty filum terminale) and will be needing surgery. Dr. Fuchs at Duke Childrens Hospital is her physician. > > > > > > ***Sorry to be lengthy. We've been told to expect for her to stay in the hospital 6-7 days after surgery because of her type of tether and likely be out of daycare 2-3 weeks after. > > > > > > My frustration with the hospital pediatricians from her birth and her first pediatrician in our old town and their lack of care in this matter is growing and I'm not sure if there's anything I can do. Additionally, I'm VERY scared at the potential costs of this entire scenario. We have good insurance but we already pay $600/mos for it and received $500 in bills alone last week from the MRI (with more to come I'm sure and many more after surgery and our lengthy stay). > > > > > > Do children born with this condition qualify for anything financially that can help us? Medicaid? SSI? My husband and I are both teachers and see that this might take us FOREVER to pay off. Is there any assistance out there? How does the Mc House work? > > > > > > Is this condition something that we could see again if we want another child in the future? Has anyone had this surgery at Duke and/or had Dr. Fuchs? Any info anyone can provide to help us at this point would be MORE than appreciated. Thank you. *Martha & family > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.