son newly diagnosed and confused Mom

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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son newly diagnosed and confused Mom

Postby tbkids » Thu Jan 20, 2011 11:40 am

My 7 year old son has been complaining of dizziness, headaches, and ringing in his ears. After being treated for a sinus infection for weeks, the pediatrician finally sent him for an MRI. The MRI showed a type 1 7mm chiari. I sent his MRI and report to a NS out of state because I was having problems getting an appointment with the local specialist. He confimed the diagnosis and said my son only had a few of the symptoms. He said that if his symptoms were constant and bothering him, treatment consisted of surgery.

We finally saw the local NS yesterday and the appointment was a disaster that left me more confused than ever. The neurologist in his practice came in and informed me that his symptoms were not caused by the chiari. He did an exam and said that my son was medically fine. He suggested counseling. His assessment did not make sense and I kept asking questions, so he finally left to get the NS. When he walked out, my son pointedly stated that he is not fine and he doesn't feel good. I do not believe my son is making up or exagerating his symptoms. This has been going on for 10 weeks and I know he doesn't feel good. I had been warned about the NS's "bedside manner", but I was completely shocked at how bad it was. He didn't examine my son at all and stated that the chiari is not causing his symptoms. When I asked him how he could know that, he just said that it wasn't bad enough to cause symptoms. How on earth could he know that for certain? What are the odds that my son has chiari symptoms and a chiari, but it is not related? Their suggestion was to ignore it because "90% of medical conditions left untreated go away". I also asked what type of monitoring needed to be done for the chiari, and he said none. My son only had a regular brain MRI, and has not had an MRI of the spine to see if there are other issues.

I don't want my son to have surgery, but I think dismissing the chiari is a very bad idea. I also need to find some way to help my son. I have contacted the out of state NS to ask his opinion, but am wondering what else I should do. The pediatrician is absolutely no help and I'm currently looking for a new ped too. The local NS is supposedly a chiari specialist, but I just don't trust him. In fact, the more I think about the appointment, the more angry I get. Can you recommend any other NS he could see? I am fine with travelling if necessary.


Thanks T
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Re: son newly diagnosed and confused Mom

Postby razzle » Thu Jan 20, 2011 1:20 pm

there is Dr. Menenz in Iowa
Dr.Oakes in Alabama
dr Frim in Chicago
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: son newly diagnosed and confused Mom

Postby tbkids » Thu Jan 20, 2011 2:47 pm

Thank you. I will try two of them as one of the ones you listed was who we saw yesterday. I might have taken his word for it if he had bothered to examine my son and answer my questions without being condescending.
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Re: son newly diagnosed and confused Mom

Postby memom » Thu Jan 20, 2011 4:08 pm

I am so sorry that you and your son are having to go through all this. We too were told that chiari was not causing our daughter's problems at first. I said what about the ringing in the ears and vision problems? How about the pain in her legs and arms? What about the fatigue? They blew it all off. Finally, when she came home from school with double vision, I knew I had to find another doctor. We ended up traveling to Washington D.C. We see Dr. Robert Keating. He is fantastic and is so easy to talk too. He is with Children's National Medical Center. You can send him your films and he will give you a second opinion.

Don't give up! You will need to develop tough skin and muster up lots of strength. Please let us know how things go. Praying for your entire family.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: son newly diagnosed and confused Mom

Postby johacas » Thu Jan 20, 2011 5:37 pm

I, too, understand what you are going through. My daughter, now 12, was diagnosed a year ago. She was very fatigued and had terrible headaches. She had a great deal of muscle weakness and couldn't even get up the school steps without needing a break. She also became quite sad because of the way she was always feeling. We saw two neurosurgeons - one at Children's Hospital of Philadelphia and one at Hershey Medical. The CHOP neurosurgeon told us we had three options - surgery, wait or get a second opinion. He was not very friendly - I just felt like we were a number, he read her film, told us what he saw and moved us on. He said her symptoms could be from Chiari, but may not. Her herniation is 8 mm. The neurosurgeon at Hershey seemed to think she should have surgery immediately since she was unable to make more than two hours of school. He stated that the size of herniation didn't matter - it was where the pressure was. He also showed us her films and explained her films/symptoms and why he felt they were connected. He was great with Cass and made her feel very comfortable. I think it was the first time she felt like someone listened to her and believed her.

We were very confused, as we were unsure of what was best for her. Our insurance didn't cover Hershey and we weren't crazy about the bedside manner of the CHOP doctor so we decided to wait. We tried different medications, physical therapy and counseling. We also got her a Chapter 15 for school. Recently we have noticed she seems to be getting worse (and she is talking much more about not feeling well) - she has ringing in her ears quite regularly and gets "Chiari headaches" when she laughs, which has caused her to withdrawal from a lot. She has developed some type of tic or something to try to relieve the headache she gets when laughing and it breaks my heart to watch her. She is becoming sad again and quite concerned about her health. I dread beginning the whole doctor chase again and am dragging my feet in dealing with it. It is so frustrating to know something is wrong with your child and have doctors dismiss it/you. I also have a 16 yr-old with M.S. who is seen by the neurology department at CHOP and I love them...I also love the neurologist that treats my daughter's Chiari symptoms (not that we've had success), but I am dreading going back to see the neurosurgeon. I know I wasn't much help, but I wanted to let you know that I understand how you feel and where you are coming from. I think the worst part is seeing my daughter feel like nobody hears her or nobody understands what she is going through. Good luck and let me know how you make out!
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Re: son newly diagnosed and confused Mom

Postby lttutrow » Thu Jan 20, 2011 6:27 pm

Just my thoughts, but you are absolutely correct to move on for another opinion!!! A full spine MRI is part of the standard of care for a Chiari, and a cine flow study can be helpful in making decisions about surgery. My daughter's herniation was small, but her CSF flow was very blocked. When the nsg got in there, she found the shape of her skull and a ligament where it didn't belong were contributing also to the restricted flow...which had been measured on the cine flow study even though those two issues hadn't been visualized on the MRI.

That said, I won't say that either of my kids are symptom free since surgery. It still is a difficult decision, and while some go on to be symptom free after surgery, many still are not. My thought is that at least I know more damage isn't being caused from lack of csf flow/brain herniation/pressure to the brain stem.

Our first opinion from a local nsg who had a great reputation was a horrible experience. He was dismissive of my son's 10mm Chiari, did not do a full spine or cine flow study, and missed seeing what I later learned was an obvious syrinx in his cervical spine visible even on the brain mri. Later, I found out he had a close friend and mentor die and was involved in a law suit over the care of a child who had been abused by a parent and died. It was quite a stressful time for him I am sure. Many other Chiari families we've met since LOVE this Dr, and think he has given them life saving care. We must have caught him on a bad day.

Thinking of you guys, and hoping you find answers!!!
Lori
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Re: son newly diagnosed and confused Mom

Postby tbkids » Fri Jan 21, 2011 10:03 am

Thank you all so much for replying. I'm glad to know that I'm not overreacting, and that others have overcome the struggle to have their child heard. I'm still waiting to hear back from the doctor at UCLA, but I'm also planning to start calling some of the others mentioned here. I just want to find out for sure what is causing my sons symptoms, so we can at least have a plan to manage things.
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Re: son newly diagnosed and confused Mom

Postby cari » Fri Jan 21, 2011 10:37 am

If you are on the West Coast-my 4yr old daughter saw Dr. Jorge Lazareff @ UCLA. He reviewed her MRI and offered a second opinion. We did not have him do the surgery because he was outside of our insurance group, but I really liked him. He was very patient and took the time to really listen to all our concerns and asked us quite a few questions about her symptoms, etc.
My daughter has a 13mm Chiari and syringomyelia that runs almost the entire length of her spine. She has never experienced any symptoms at all. The Chiari and syringomyelia was discovered from a fall that fractured her skull. She had surgery in August 2010 and the first post-op MRI showed a 50% reduction in the syrnxes. We consulted 3 NS before deciding to have the surgery. Each NS strongly recommended surgery-not one suggested a "wait and see" approach.
Good luck to you!
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Re: son newly diagnosed and confused Mom

Postby tbkids » Fri Jan 21, 2011 12:02 pm

Thank you. Dr. Lazareff is the one I am waiting to hear back from. He reviewed the MRI last week, and said he concurred with the radiologist. He said my son had a few of the symptoms and the severity would determine the course. He never once mentioned that the chiari wasn't causing his symptoms. We've only communicated via email, but he was very kind. Unfortunately, I am in the Southeast, so not close to UCLA at all, but I will travel if necessary. My insurance is excellent, so I don't think I will have any problems on that front. At least I hope not. I'm also planning to call Dr. Frimm and see if he will review the MRI. Do any of you know about any of the NSG in Atlanta, Nashville or Memphis, these are all driveable from Alabama?
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Re: son newly diagnosed and confused Mom

Postby medicpt » Sun Jan 23, 2011 7:21 pm

For johacas,

My dtr was diagnosed with a Chiari, and we tried to find a specialist in our area who was covered by our insurance. we live in the southeastern part of PA. Hershey was closest, Philly was next.... but we opted to go to Wilmington DE to Nemours Children's Hospital. We saw Dr. Joseph Piatt. He was initially cautious with the first MRI, ordered an additional MRI, then made the recommendation to move to surgery. Everyone at Nemours was kind and compassionate. Dr. Piatt completed a great neuro exam, and took a good history, he even endured a 45 min "cross examination" of questions by my husband and I on the initial consult. We did not feel rushed or like a number. My daughter had her surgery on Sept 30, 2010. to date, she is doing grea! (Her primary problems were central sleep apnea and vocal chord paralysis) BTW, Dr. Piatt has done some research articles on Chiari and has interest in treating these kids. There was even another Chiari kid next to us in the PICU done the same day.... they do a good volume of decompressions so they know what they are doing with these kids.

Unfortunately, in working in the healthcare world, I am familiar with CHOP and Hershey, and recently, I cannot say that I would personally recommend either institution for Chiari kids. CHOP because they would rather see the kids with other neurologic problems... they just don't see Chiari as a big deal. Hershey because the nursing care leaves something to be desired and I have seen some post op menengitis.

Wishing you the best as you work with the medical community and your child for her health. The chiari kids are all in my prayers.

wendi2
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Re: son newly diagnosed and confused Mom

Postby momintexas » Tue Jan 25, 2011 1:43 pm

Hello.

Although we aren't in the Southeast, we are in the South! :) My daughter had exceptional results with Dr. Dale Swift, pediatric Neurosurgeon in Dallas, TX at Children's Medical Center. Our entire experience was very positive from start to finish! My daughter's outcome has been nothing short of amazing and I credit Dr. Swift for giving my daughter a wonderful life! :)

Wishing you the best of luck and sending thoughts and prayers your way. Happy to answer any further questions.

Sincerely,

Lana
Mom to 9 yr old Madison - 19mm CMI diagonosed 2/2009
http://www.caringbridge.org/visit/madsi
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Re: son newly diagnosed and confused Mom

Postby hagiefamily » Wed Feb 09, 2011 2:55 pm

My daughter was diagnoised 10/10 with CM 1 and I am feeling the smae way, confused and frustrated. I did see Dr Menezes in Iowa City, Ia and he was fairly vague also and he is suppose to be one of the best. Dr. Menezes told me that she shouldn't ride roller coasters and be the last one on the team to dive for the volleyball and that he would see her again in a year. He also told us that CM 1 did not cause her siezures, yet he didn't really care to point us in any other direction for help. We too are a little frustrated.

Anne in Iowa
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Re: son newly diagnosed and confused Mom

Postby hagiefamily » Wed Feb 09, 2011 3:00 pm

My daughter was diagnoised 10/10 with CM 1 and I am feeling the same way, confused and frustrated. I did see Dr Menezes in Iowa City, Ia and he was fairly vague also and he is suppose to be one of the best. Dr. Menezes told me that she shouldn't ride roller coasters and be the last one on the team to dive for the volleyball and that he would see her again in a year. He also told us that CM 1 did not cause her siezures, yet he didn't really care to point us in any other direction for help. We too are a little frustrated.

Anne in Iowa
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Re: son newly diagnosed and confused Mom

Postby tbkids » Fri Feb 11, 2011 10:06 am

Just thought I would give a quick update. I have spoken with both Dr. Lazareff and Dr. Keating. They both think his Chiari is significant enough to warrant further testing. We are going to UCLA next Tuesday for a CSF flow study and full spine MRI. We will see Dr. Lazareff after the MRIs. Hopefully, we will have some more definitive answers next week. Thank you all for your insight.
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Re: son newly diagnosed and confused Mom

Postby kellbell » Fri Feb 11, 2011 11:13 am

Good luck to you all. I pray that you get the answers and the HELP you need for your son. Please keep us updated.
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