I am sooo sorry to hear what u r going thru. It is not fair that this is happening plus your ds is so young. I heard symptoms can cycle and return for sometimes no obvious reason.who did surgery? Was it a true chiari specialist?? The only thing i can advise now is contacting a chiari center...my heart goes out for u and ur family
I'm very sorry to hear about your son's issues. Can't imagine how unpleasant and frustrating this all must be for him and you as the parent.
I do have every symptom that you cite above. I do also have other issues beside Chiari though so where they are coming from who knows for sure.
However the issue that his home with me is the speech. That problem completely left me after the surgery nearly two and half months ago. That is until about two months back. I was really doing very well and then literally overnight my symptoms came back. Speech has been the most progressive other than the pressure in the head. Some other symptoms as well are getting rather disturbing.
As for the MRI... JMO... but I don't feel a Radiologist's comments are worth the ink they are printed with. Why? Let me give you an example. I had a CT scan just about 3 years prior, now had a recent MRI last week. The CT scan specifically says 'No Chiari 1 present." This was pre dx for me so I had no clue what Chiari was even. Now I've had decompression surgery 2.5 years ago so what does the recent MRI say? This was read by the same Radiologist and despite changes that I KNOW are there he says "unchanged from 2009 CT scan". I pulled out those old scans to try and see why he would say that. I can visibly see the difference in herniation and in a prevalent cyst.
So for what it's worth my advise to you would be 'Don't put all your faith in this Dr.'. I really feel that your son needs to go see a different Dr for a second opinion. Something IS causing these symptoms. When I was 8 my first visible symptoms started getting life altering. I was taken to a Dr. who kept saying everything was normal. he eventually, in front of me at 8 years of age, told my mom that I was making it up for attention and that there was nothing wrong with me. Trust me, you want to get your son to another Dr that will look for the causation of all this and forget about the 'unchanged' because obviously 'something' is changed.
Hope I didn't babble too much...
Do you have a Chiari specialist for your little man? If you don't then I recccomend finding one immediately, and if your NS is a chiari specialist, then I would get a second opinion. I have never had surgery, and my herniation was 7mm 2 years ago and grew to 1.2 cm in the last year. I am not sure why but I know that it sounds like your son is def having symptoms reappearing and I know you want answers. You might have to travel to see a specialist, but it is the best that I can tell you. I am so sorry to hear that your DS is having a hard time. I wil be keeping him in my thoughts and prayers :) WEll wishes coming your way.
I just have to agree with CW on this one though....find another DR. because all the symptoms you listed are things that most of us here deal with on a daily basis. Dont let your precious little man get lost in the Chiari run around!! There are helth pages here that has a Drs list that memebers have used, its not meant as a refferal, but it will give you a starting point to research a Dr that is right for your son, and I would make sure to get more than one opinion..but def make sjure that the opinion comes from a true Chiari Specialist. Take care
Hi and welcome to the Chiari forum.
I have to say I am so sorry ur little guy is going thru this...yes, this can be chiari...and I would take CW's advice and find a diff NS.....
Not knowing who u took ur child to, or what the situation was, I always feel an outside look may be of help. A true chiari specialist is who u want to contact and one that deals with children.
Scar tissue in the last few yrs could be an issue, as well as if he hit his head , had a jarring fall...a number of things.....
Then there is the related issues, were they ruled out?... A syrinx, Ehlers-Danlos, sleep apnea, PTC, tethered cord, over crowding.....???
May I ask how at age 2 he was dx'd with chiari?...I am curious.
Thank you for all the comments. From the research I had done prior to surgery his Neurosurgeon is one of the best in the country. Chiari being at the top of his list, Dr. Crone Cincinnati Childrens Hospital. However he is retiring and I'm not sure they even placed my son with a new Neurosurgeon yet. He wasn't due back for 4 more years due to 5 years of good stable checks. The few times I have called, they blow me off completly and say it's not Chiari symptoms and tell me to turn to Neurology, which was of no help. I got his Pediatrician to order the MRI and e-mailed Dr. Crone directly to look over the scans. He has corresponded back and forth and also doesn't believe this is the issue. I really feel like it is but I really value his knowledge so I'm kind of in a state of total confusion. As far as him being diagnosed at 2 well, that's kind of a long story. I knew within a few hours after he was born something was wrong with him. Call it mothers intuition or just a gut feeling but he screamed non stop this aweful blood curdling cry. This continued all the way up to surgery. He started to have tremors at 5 months old. I was being told he had colic, acid reflux, and I wasn't feeding him enough ( he was chunky). I was told by his Ped at the time he was perfectly healthy and I told her perfectly healthy babies don't shake and I wanted him to see a Neurologist. He wasn't like other babies either he didn't take anything in didn't look around contently and didn't even smile till 8 months. He cried all the time!!! Got the MRI from Neuro and was told they found a Chiari Malformation but he was asymptomatic. From there we had a major fight on our hands. The Neurosurgeon he was placed with did not feel his Chiari caused him any symptoms and I was told he possible had behavior problems at 8 months old. I am still doumbfounded by that! We found out he had sleep apnea (obstructive) and sent to ENT who said it was caused from the Chiari probably poor muscle tone. At that point his Neurosurgeon wanted him to get in with the sleep clinic and they were booked out 4 months. My son at that point was what I call cycling. He would have a few good days followed by extremly bad weeks. He did this thing with his head where he would shrug it into his shoulder. He couldn't sleep would wake an hour later screaming and wrenching like he was on fire. It would take hours getting him back to sleep all the while flailing around, and an hour later we would do it again. At this point he was 15 months old and he had dark cirlcles under his eyes and couldn't stand or walk, he would just fall down, I believe from sleep deprivation. I called his ped, Neurosurgeon, and ENT begging for help and they all said we can't help you you have to wait for the sleep clinic appt.. Luckily I had a connection with a mother from ASAP who lived in cleveland. We packed him up at 5 in the morning and drove to Cleveland clinic E.R., where she meet us. I went over his history showed them a scan and begged for there help. After almost sending us away and me breaking down on the doctor she agreed to admit him if I would allow them to run a bunch of test to see if it was something else. I agreed. They came back and told me it was the Chiari and if I chooses not to do surgery he would have to within a year. We came back home and his Neurosurgeon had left to practice in another state. Yeah, so we would be placed with another doctor, right. Uh, noo! Aparrently it doesn't make them happy when you do what we did. His pediatrician told us she would not be his doctor anymore and we were told that the other Neurosurgeon was booked out 2 years, good luck. I was soo scared in that moment thinking what did I just do. So, I finally got it togeather and by the advice of one smart lady called Neurosurgery Dept back and left a message that given the different opinions of his old Dr. and the one we saw in Cleveland and the fact they they said he needs surgery we would need a third opinion. Since they can't get us in for two years I would need that in writing right away for my insurance company so we can take him out of state. I recieved a call back 2 hours later stating that the Neurosurgeon looked over the scans and he would need to see us immediatly. They got us in that week. We were told that had that Neurosurgeon had seen his scans he would have had surgery months ago as he had no CSF flow in front of the herniation and very little in back. So we scheduled surgery. He was operated on at 1 and 1/2 and the revision right before his second birthday. I believe if I would have given up then like they wanted me to it would have been much longer for a proper diagnoses.After typing all that I feel like I already know I shouldn't give in this time. It's just harder this time because he was doing soo good. I also don't want to blame something on his Chiari if it could be something else and I know the Chiari is always on our minds for him. Again though my gut is screaming at me that it is, also it doesn't help that they are saying it's not Chiari symptoms when I've done the research for 7 years now and I know they are. I was talking with my son today when all of a sudden he looked at me as if he was scared, eyes wide open like he was making them as big as he could. He did this about 10 sec. and I asked him what just happened. He was doumbfounded and said he didn't realize he did it. I asked him if something hurt and he said they always just feel funny. I noticed too during the eye exam at the eye doctor and Nuero that he can not follow an object downwards. His eyes will get real big as if he is trying then they shoot sideways. They blew it off saying sometimes it's hard for an 8 year old to do, they will recheck at a later date and made note of it. I feel it's all connected somehow.We see his Ped. tomorrow to come up with a plan and from what I understand they want to rule out each symptom alone organ by organ specialist by specialist. I just feel like at this point there isn't much more test or doctors to see. He is to the point where it is effecting him emotionally. He is crying all the time becoming depressed and scared. He is missing so much school going from doctor to doctor. I have thought about calling the Neurosurgeon who saw him in Cleveland to get his opinion if all else fails. I don't want it to be the Chiari and I really don't want to think about another surgery for him. I would love to put this out of my mind and look for another cause. However, when I go over his symptoms it keeps pointing me in that direction. Sorry I just responded with a book, he has a complicated history.
Hello,& welcome so sorry u & ur son r dealing with this. First I would like to say u r a GR8 mother,as Selma always tells me go w/ur gut,moms seem to have that gift of knowing :) My DD's NS made this statement & asked me to pass it along. Her specific problem lied with in the brainstem,her problem was that the brainstem was being compressed,which is what caused the herniation,ur DD'S symptoms were from the brainstem compression alone. My daughter has had most of the symptoms ur son is suffering with,& more.The more she grew,the wose they became. She is being cared for by The Chiari Institute,in NY. I truley no the pain u r dealing with. I myself spent 3yrs trying to get her the help she so desperately needed. I to was told she was making it ALL up.UR in my prayers.
WOW...u have been thru a lot and so has ur dear child....
But, I did not read where they ruled out a syrinx, or tethered cord, or ehlers-danlos....PTC...all related issues....glad they did find the sleep apnea as that is a big one many Drs do not think to look for.
Which Dr in Cleveland?.....
U deff need another NS that is a true chiari specialist to look at ur child to see what else may be going on.....
I always felt that the mom's with chiari were in a position to help their children as they have been thru this already and know the ropes so to speak and know what to look for, but a mom's natural instinct is always going to direct u as to what is right and wrong with ur child.
Keep is posted
The MRI impression states stable examination compared to the previous study in Aug. 2011. Mild tonsillar ectopia remains, greater on the right than the left. No significant compression of the anterior aspect of the cord or medulla with adequate CSF. No specific post surgical complications are intentified. From what I'm told no syrinx or teethered cord. His recent MRI did include the spine. What is Elhers- Danlos ? I have not heard of this. The doctor in Cleveland was Dr. Lucianno. He worked under Dr. Benzel I believe. I saw on the Cleveland Clinic website you can get an online second opinion from him. I was thinking about doing that and seeing what he thinks. If he does think it's related we could make an appt. to go see him again.
So a MRI of the cervical spine , thoracic and lumbar was all done.....
Ehlers-Danlos* is a connective tissue disorder that many with chiari have as it is a related condition.
There r several types of EDS* and u do need to be checked by a rheumatoid Dr to rule this out, but it can affect how one feels and heals post op.
We do have a EDS group here on MedHelp and there are video links posted that explain what it is -http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc
The video's r done by a Dr that also has EDS...so u may find it helpful to watch a few of these.
Hi. Sorry to hear about your son's sufferings. It is not easy to tell if it's from Chiari, however, my doc specializes on Chiari in children. He said it is not uncommon for a recurrence in children and that they may need another decompression later on because as they grow, the blockage returns and the symptoms come back plus add scarring to that. He told me this when mine recurred (though I am not a kid). Getting another opinion from Dr. Luciano sounds like a good plan of action at this point. At least it is a start. Good luck!
Everytime i am reading through this thread i feel so sad and sorry...do ask for a second online opinion and if u tell them whats going on i am sure a true specialist at least has explanation...sending u loads of strength and love
Unbelievable! I feel livid for you as well. My condolances go out to you and your sweet son. I agree with everyone who have reponded and what mdavid said is so true. I am so glad that the sleep apnea was found, it is rediculous that they couldn't see him sooner.. to have to wait 2 months for a sleep study when he is having all these other symptoms must have been so stressful for you and your son. I have Chiari as well and have a 16 month old DD. Although she doesn't present any obvious symptoms I wonder if she still has it. I had some childhood issues but they didn't get real bad until I was 24. I will be discussing this with her pediatrician during her next check up. I am not sure when we should pursue an MRI for her.
I know how much it hurts to have Chiari, no child should EVER have to suffer this way. And to be treated poorly by medical personnel is unacceptable. It makes me so mad to read about how your son has been treated. I commend you for everything you're doing. You're a strong woman!
I am sorry for the circumstances that brought you to our forum but I want to welcome you and your son to our chiari family.
Thank you all for the support and comments. I went to his Pediatricians appoitment well prepared and we had a very long meeting. I had a list of possible things it could be as well as questions about his MRI's. She said my questions were very legit but she couldn't answer them so she gave me a referrel to the Neurosurgeons. She also did blood work up to check his thyroid all though she doesn't believe that's the issue. She said she doesn't think my son has Aspergers or mild Autism but she did say that she thinks there may be something mentally causing it. She said she believes he feels it and it's happening but it still could be from anxiety. She also stated it could be a medical reason we just haven't found as she had a patient who awoke one day and couldn't walk. It lasted a year and then she came out of it like nothing was wrong. They never figured out why that happened and they can't say if it was something mental or medical. I have been looking for every possible cause even down to his singulair that he has been on for years but had come off of for 6 months and just recently started again. I feel like I'm doing more work than the doctors but if it gets us some answers I'm okay with that. The Neurosurgeon office called to ask about the referrel and after reviewing his history said it is a possibility a growth spurt and scar tissue could be causing this, they want a swallow study done and exam by ENT and then he will see them in June. He should have his glasses soon so we will see if that helps and he also has an O.T. appoitment which I'm going to see about crainal sacral massage. He also sees his Speech therapist Wed. so hopefully she can put her two sense in, as that is the part that concerns me the most since it has deteriated so much. We can't get him into the devolpement and behavior clinic for about a year as it is one of the best in the country and they are booked out that far. I am keeping detailed records of everything and looking up everything I can.
Thanks for posting the update...I pray u get even more answers and he gets the help he needs.
Do keep us posted and if there is neway we can help let us know : )