We had our 2nd appt with the NS yesterday. After out 1st meeting I was to get my daughters eyes checked ans a spinal MRI. No syrinx! Thank goodness. I thought this appt would be a complete waste of time because of the NS's previous comments. He said that he only operates on 1 in 10 patients. Now I realize what he was doing. He wanted to rule out every possible reason for her headaches, bad grades and fatigue. Her eyes were fine as well. He wanted to know if she had gotten any better since the last visit. Everything is the same. So towards the end of the visit, he said that he'd be willing to do the surgery. I was shocked! Then the tears came. In his opinion her quality of life is not normal for a healthy 17 yr old. So dec. 16th will be the big day. I'm so nervous. Now on to her NL. We have an appt with her just 2 days before surgery. She is TOTALLY against surgery and even made fun of it on a way. She doesn't think that my daughters symptoms are even related to her chiari. I'm a little scared to see what she has to say about us going thru with the surgery. All she wants to do is medicate medicate medicate. Here are her symptoms, please tell me what you think.
Daily headache
Nausea
Inability to focus
ADD symptoms
Neck pain
Dizziness
Extreme fatigue
Snoring
Depression
All of these are on a daily basis
Thanks Christine. I’ve read it but I’ve been a little hesitant about what I blame on chiari. I can’t deny it anymore. Why is it that you get no where the your NL but you action from the NS?
Christine H. said:
symptoms list chiari.htm Here is the link Tonya. It can be found in the discussion area if it doesn’t work.
Christine H. said:Hi Tonya!! Those sure sound like classic Chiari symptoms. I’ve had all of those and then some over the course of my life. Actually one of our members was nice enough to post a long list of symptoms that we seem to have at some point or other, acutely or chronically. She also posted questions to ask your doctor. I will find the link and come back and repost. I’m sending well wishes for a great surgical outcome. Please keep us posted on her post op status…
Congrats and good luck!!! I am glad the NS thinks surgery is a good idea. I think her symptoms sound like Chiari.
My husband and I have spent 11 months trying to figure out if our sons 24/7 headache is caused by his Chiari. He has always had neck pain and in the back of the neck headaches but all of the pressure behind his eyes causes constant headaches 24/7. We have decided to go Jan 16 to Barcelona to get the surgery. They do Section of the Filum Terminale which is a 1 hour procedure and they have had excellent results. We have emailed 10 patients from that clinic and they all had great success. I would just make sure the Ns is a Chiari Specialist and has done alot of these surgerys. We have been to so many Drs and 2 said it was the Chiari and the others said no. Sinus surgery, Allergy specialist and Nl tell me he is just a headache type of a guy ( I am not going to accept that answer!), Trigger point therapy, Tmj, Fibromalagi and the list goes on....And finally talked to a physic who said the surgery will help my sons symptons. My biggest fear is to have my son go thru this and it not be Chiari. Good luck with ur daughter and let us know.
Tonya,
I am happy to hear that your daughter has a good NS..from what you posted, your NS made sure that there was nothing else that could be causing these Sx's...100% agree with Christine H.....sounds like classic Chiari sx's..
It is a wonderful thing that she can be treated soon...from all I have learned...the sooner you have symtomatic Chiari treated with decompression surgery...the better the outcome...
For instance, if one goes yrs and yrs without a proper Dx and many of us here have had that issue, the long term success is not as great as someone who is treated promptly.
I have shared this b4 on this site..but i want to tell you in case you didn't read it....My niece is an MRI tech...her hospital got a new machine and Meg volunteered to give it a test run.....Well...they found a (I believe it was 6mm Chiari) and a huge syrinx..long and wide...she went straight to a NS...bypassed NL...botttom line is she is 8 weeks post op and Wed was her 1st day back at work..she is feeling great...she had sx's like H/A's and numbness on the side of her face...NL's blew her off ..and gave her med..no MRI.
Can I ask what the purpose is for you daughter to see the NL before surgery??? When my NS gave me the Dx and treatment plan, i came right and asked him something like..."So, there is no need for me to go to another NL at this point, right." NS responded something like.."NL's are not educated on Chiari Malformations so,yes, I would say the NL is now out of the loop." Maybe you may want to call your NS and see if there is a specific reason for your daughter to go to this appt with NL..ask, what exactly is the purpose of a NL visit???
Keep us posted.....Peace.
Lori
Well her NS is also a sleep study specialist and ordered a sleep study. I JUST got the sleep study report 2 days ago and it just so happens that she also has obstructive sleep apnea. This is due to a recessed chin. You can’t really tell by looking at her because she’s so darn beautiful, but it is considered a craniofacial deformity. Lots of people are worse off than her and you can really see the malformation. She’s really lucky. However because of this, the opening in her throat is really small. Hence the snoring . When she was 9 yrs old, we had her tonsils and adenoids removed but the snoring still continued. She got braces at 11 years old and that’s when the orthodontist discovered the chin and jaw problem. So in a nut shell, she will have to keep her appt with the NL now, to get a referral to a craniofacial surgeon. She won’t be happy about the decompression but oh we’ll. What does she expect me to do? My daughters quality of life isn’t all that great. One surgery at a time I suppose. Her NS is wonderful and the best of the best
lori said:
Tonya,
I am happy to hear that your daughter has a good NS…from what you posted, your NS made sure that there was nothing else that could be causing these Sx’s…100% agree with Christine H…sounds like classic Chiari sx’s…
It is a wonderful thing that she can be treated soon…from all I have learned…the sooner you have symtomatic Chiari treated with decompression surgery…the better the outcome…
For instance, if one goes yrs and yrs without a proper Dx and many of us here have had that issue, the long term success is not as great as someone who is treated promptly.
I have shared this b4 on this site…but i want to tell you in case you didn’t read it…My niece is an MRI tech…her hospital got a new machine and Meg volunteered to give it a test run…Well…they found a (I believe it was 6mm Chiari) and a huge syrinx…long and wide…she went straight to a NS…bypassed NL…botttom line is she is 8 weeks post op and Wed was her 1st day back at work…she is feeling great…she had sx’s like H/A’s and numbness on the side of her face…NL’s blew her off …and gave her med…no MRI.
Can I ask what the purpose is for you daughter to see the NL before surgery??? When my NS gave me the Dx and treatment plan, i came right and asked him something like…“So, there is no need for me to go to another NL at this point, right.” NS responded something like…“NL’s are not educated on Chiari Malformations so,yes, I would say the NL is now out of the loop.” Maybe you may want to call your NS and see if there is a specific reason for your daughter to go to this appt with NL…ask, what exactly is the purpose of a NL visit???
Keep us posted…Peace.
Lori