Guest guest Posted June 4, 1999 Report Share Posted June 4, 1999 Hello everyone, I posted a week ago saying that my daughter was going to have a MRI done. She had this done this morning and it was quite an experience! They did put her to sleep because she is only five. She is home and doing well. I requested to speak to the radiologist and was told okay. I asked several questions. He had not heard of Dr. Milhorat and his redefining of what chiari is. But after I explained to him what I knew regarding the redefining, He told me that me daughter's cerebellum is so compressed. He said there is NO room for it. He said he could see that the posterior fossa was extremely small and that the foramen magnum was very, very tight. He said it was too small. I asked about the odiotiod bone. He said that it was tilted alot. He spoke to me in simple english. We got interupted because I called to go recovery. He wanted Dr. Milhorat's number and also the date the article came out. OH, I asked about a syrinx and he said he didn't look for a syrinx. But that he would go and look again at the films. He said he would send a copy to my daughters doctor for me. Well, this is child number two that has been diagnosed! Only three more to go! This is so hard to find out that my children are being cursed with this evil. My heart is so broken for them cause I know what they will have to endure. ( I too have ACM). It looks like my daughter will have to have surgery, possibly soon. I will know more next week. I had a lump come up around my collar bone last week. They did a biopsy on it Wed. because it was getting bigger. They will know what it is Monday. I'm having symptoms of Hodgkins diease. But I do not know what it is. I will wait and hear from the doctors before I start to get scare. If anyone feels led to pray for my family, I would appreciate it. I believe prayer works! Ledena/TN _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 > I had a lump come up around my collar bone last week. They did a biopsy >on it Wed. because it was getting bigger. They will know what it is Monday. > I'm having symptoms of Hodgkins diease. But I do not know what it is. I >will wait and hear from the doctors before I start to get scare. If anyone >feels led to pray for my family, I would appreciate it. I believe prayer >works! Ledena/TN Hi Ledena, I am so sorry to hear that you have 2 children with ACM. It is so difficult for adults to go through, but to have a child robbed of thier natural, playful, childhood is heartbreaking. Yes prayers are sent right now for your family. I also have a knot on my collarbone and they protrude. I have no idea what this is. I did talk with Dr. Oro about it and his nurse took notes. They were interested as it being another symptom of chiari but were reluctant to call it that as they had not had other patients with that complaint. I have swelling and soreness in that area....wish I knrew what it is. I hope you will post as soon as you hear something. Hugs, Judy Marie ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 Hi Ledena, I feel very compelled to pray for you and your family and certainly will do so. I am sorry to hear of your recent news about your daughter. Let's hope and pray that early intervention is the best medicine possible for our babies. Hopefully treatment, at the onset of their symptoms, will help them achieve as *normal* a lifestyle as possible. I am putting my faith into this theory...have to! As you may recall, my 4 yr old son has ACM/SM and my 10 yr old daughter will be going to the neurologist next month and an MRI done thereafter. Neither my husband nor myself have ACM and thus, we are plagued with mixed emotions. In the meantime, I will continue to pray my daughter is ACM-free...only time will tell. I will be thinking of you and your family during this very difficult time. Warm regards, Suzanne L. (Danny Boy's Mom) 4 yrs. old ACM 1, SM 8 Months Post-Op, Children's Hosp., Boston My daughter has ACM! >Hello everyone, >I posted a week ago saying that my daughter was going to have a MRI done. >She had this done this morning and it was quite an experience! They did put >her to sleep because she is only five. She is home and doing well. >I requested to speak to the radiologist and was told okay. I asked several >questions. He had not heard of Dr. Milhorat and his redefining of what >chiari is. But after I explained to him what I knew regarding the >redefining, He told me that me daughter's cerebellum is so compressed. He >said there is NO room for it. He said he could see that the posterior fossa >was extremely small and that the foramen magnum was very, very tight. He >said it was too small. I asked about the odiotiod bone. He said that it >was tilted alot. He spoke to me in simple english. We got interupted >because I called to go recovery. He wanted Dr. Milhorat's number and also >the date the article came out. OH, I asked about a syrinx and he said he >didn't look for a syrinx. But that he would go and look again at the films. > He said he would send a copy to my daughters doctor for me. >Well, this is child number two that has been diagnosed! Only three more to >go! This is so hard to find out that my children are being cursed with this >evil. My heart is so broken for them cause I know what they will have to >endure. ( I too have ACM). It looks like my daughter will have to have >surgery, possibly soon. I will know more next week. > I had a lump come up around my collar bone last week. They did a biopsy >on it Wed. because it was getting bigger. They will know what it is Monday. > I'm having symptoms of Hodgkins diease. But I do not know what it is. I >will wait and hear from the doctors before I start to get scare. If anyone >feels led to pray for my family, I would appreciate it. I believe prayer >works! Ledena/TN > > >_______________________________________________________________ >Get Free Email and Do More On The Web. Visit http://www.msn.com > >------------------------------------------------------------------------ > >eGroups.com home: /group/chiari > - Simplifying group communications > > > > ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
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