My son is sixteen years old and was diagnosed with chiari malformation a year and a half ago. He has had all the usual symptoms associated with chiari, i.e. blackouts, head and neck pain, burning in arms, neck pain when he sneezes, intense eye pain when he turns his head, etc...( Along with the usual dismissals from neurosurgeons ) The more symptoms he has, the more thin his hair has become on the back of the head. He also has 3 small bald spots located on the back of his head close to the neck area. Is this another complication of the chiari?
May I ask, is ur DS on ne meds?..if so, which ones...did he have ne treatments for chiari?
Chiari is connected with autoimmune disorders, one is Hashimoto's Thyroiditis....and the thyroid can affect hair loss, as well as another possibility...the pituitary gland...with some it can get compressed and affect different things as well.
Ask to have ur DS' TSH, free T3, free T4 and TPO antibodies checked....also a ultra sound of the neck can also help dx this condition and connection.
He isn't on any meds, the doctors in this area are clueless about how to deal with his chiari.
We have been to 2 neurosurgeons and they both state his 5 -6 mm descent isn't bad enough to be causing his problems. I am beyond frustrated ( and worried) at the lack of knowledge, by medical professionals in the northwest florida area.
Every time I mention a new problem to his pediatrician she just gives it a brush off and doesn't deem it very important.
Her only redeeming quality at this time is that she will refer him to wherever I can find a neurosurgeon that might listen to us. (albeit with a condescending attitude)
Currently, we are in the process of initial contact with Dr. Ragheb at Miami Childrens Hospital. So far, we have only seen him once and he said our MRI's we brought from Pensacola were poor quality and inferior. So we now have to go back in a month to get an MRI at their hospital.
I don't know if he will help my son or not.It doesn't bode well when he doesn't ask us, in detail, what all of his symptoms are.
We'll have to wait and see...
So, at this point I don't know who to ask, or tell, about the possible pituitary connection.
My son is ready to give up, he is currently receiving speech therapy due to it being worse and also mental health counseling to deal with the anxiety of living with the chiari and no medical person seems to understand what he is going through.
It is a shame that there is not more widespread knowledge about chiari, and a lay person has to dig to get all the current information about this terrible disorder.
Thanks for your reply and I appreciate any and all info you can provide!
Did u check with Dr Barth Green he is a Chiari dr in Miami...not sure what ages he treats or how good he is, but we have had several members go to him....u may want to check him out at least.
The only other option is to travel...I had to go out of state....many others did as well......
Tell ur son, giving up only prolongs the inevitable.....this is something that will need to be dealt with, so sooner while younger is best....
And I agree with u about the medical profession not knowing enuff about chiari to help those of us who come knocking....on the web u will read that chiari is a rare congenital condition, it is not rare, look at how many have it, it is the well informed and experienced drs that r rare.....
Last, it is not the length of the herniation, but if there is a CSF obstruction and overcrowding that is important. Too many drs look at the size...my one tonsil was only 4mm, the other was 6mm I had surgery bcuz I had an obstruction and bcuz of the symptoms I had as a result.
If the tonsils were not the issue, I would not have felt better post op, but I did...and have not had many of the symptoms return...some have and some I still deal with...but that is chiari and it was also let go far too long....I was 48 when finally dx....I went to drs when I was ur DS's age.
Thanks so much for your words of support!
Yes, I called Dr. Green's office first and was informed they do not take pediatric patients. I asked if they could refer me to someone who could help my son, and that's how I contacted Dr. Ragheb.
His primary problem is the blackouts and feeling like he is going to blackout. It only happens when he bends his neck (even at a slightl angle) for at least 5 minutes, or yawns.
Most people take for granted how often your neck is bent, i.e. sitting at a desk looking at a textbook, yardwork, housework, reclining,...
He now has the new symptom of eye pain when he turns his head. He turned his head to look at a teacher as she lectured, and was struck with sudden intense pain behind his eye, at some point the pain migrated to the back of his skull and neck.
He has several other symptoms, but these are the most troubling.
We flew from Ocala to Miami for his appt, via Angel Flight, and he had the worst pain in the back of his neck, when we were landing.
As we will probably be flying again when we go back, do you know of something we can do to help lessen the effects of the landings?
Tell him he is not alone. I am seventeen and have a cm1 scoliosis and cervical mylopothy. I live in colstant pain. Head neck joint back and emotional. No meds or doctors or procedures have yet to help me. I still attend school as a senior but i cant concentrate and i have a horrible time keeping up because of all my dr appts and just being in pain. The worse thing to do is give up. To give in to the pain. He needs to know people who understand and can help him keep his chin up.
Hi...he should try earplanes to help with that ear pressure...my DD swears by them...chewing gum will help as well....
I know a few that were placed on Dianmox or TOPAMAX to help reduce the pressure if that is the problem,....do talk with his drs .
U will also want to travel with a pillow to help keep his head from bobbling around....
I was told to raise everything to eye level so I am not looking down...most of us have this same issue with our necks.....
When sitting in an auditorium I found it best to sit on the the left and look right...looking to the left was always a bigger issue...looking straight ahead works ok too...,see if he can change seats till he finds what position works better for him.
Hi,my son came home from school and said that he had trouble breathing for a period of less than 5 minutes. He said he was writing on the assignment for that class and just felt an inability to breathe properly, lasted for a few minutes,and as suddenly as it came on, it just went away.
He said he wasn't stressed or anything he was just leaning forward to do the classwork and was writing when it happened.
I asked him what he would have done if it had lasted longer, and he said he would have freaked out.
I have put in a call to his pediatrician and am waiting to hear from her. I wouldn't be surprised if she just rationalized it away...
I'll keep u posted.
Btw, thanks so much for all your advice! It helps to know there is someone who understands!
When my symptoms started to get worse I noticed on my neck my facial hair was either gone or very thin in several patches. It lasted for quite a while. After the surgery it's back to normal and even again. I searched and searched before about it but could never find anything. I have no idea if it is related but thought I would mention my situation as well in case it helps.
Hi, Just back from Miami last week to do the latest MRI. Dr. Ragheb wants to go ahead with the decompression surgery but does not want to open the dura. He said my son had a 6 mm descent and he can see where the problem is, when he bends his neck. He seems to think decompression without the duraplasty will be enough to give him relief.I hope he is right! It is such a relief to finally get to a surgeon who knows what is going on!
Hi...I know this procedure is primarily done often on children.
If ur Dr is talking about the bony decompression-: The simplest option is bony decompression only. After exposing bone, a portion of the occiput and the posterior arch of the C1 vertebra are removed. The dura and underlying brain are not disturbed. This operation is performed by a minority (but a growing number) of surgeons. Most believe that expansion of the dura is also needed.
Some NS's will score the dura for the expansion...some will not touch it at all....ask more questions...
Since ur DS is having breathing issues...it seems surgery is something u may not be able to avoid much longer.
I'm not sure of the exact terminology he used in our conversation. I was in shock that we finally had a neurosurgeon who knew what was going on. I have his nurse's email to contact with any questions. I will inquire about more details.
I did ask if they were going to use the interoperative ultrasonography during surgery to monitor the cerebellar tonsils, and his nurse said yes. She said that it was on the OR schedule as having the decompression performed with a possibility of duraplasty.
Have you ever heard of a chiarian having rigidity episodes?
A few weeks ago, his neck became rigid with every muscle corded up and an inability to move his neck. ( this happened after bending head back). He also had chest pressure at the same time. It lasted about 5-10 minutes and slowly relaxed. He had severe backache for the rest of night.
Then a few weeks later, when we were flying back from Miami in an unpressurized cabin, it happened again as we had to go up in altitude to 8000 ft,but it happened to his whole right arm. It was corded up and rigid. He couldn't bend it or anything for a few minutes and then it slowly let go.
Have you heard of that before? the surgeon didn't think it was related to pressure change.
My 16 year old daughter had decompression surgery in Feb. 2011. In June 2011 we went back in for w/Duraplasty. She is showing an amazing recovery and regaining most of her feeling and senses. We are returning for a follow up MRI next week to check syrinx. I don't usually post but want to encourage anyone facing this frightful time.
Hi Selma! My son is now 3 months postop from bony decompression surgery performed by Dr Ragheb. I am happy to report that all of the chiari symptoms have been greatly relieved! His syncope episodes have ceased and the intense head and neck pain is nonexistent.As soon as he woke up in recovery, he had sensation in his knees for the first time in 2 years! we knew at that moment, he was finally going to have relief. My joy is indescribable! Believe it or not, our neighbors teen daughters,(2) have just been dx'd with chiari and I was able to tell her where to avoid going so as not to waste their time. are
Thank you for all your words of wisdom and encouragement! I directed her to this website and told her how much it helped me deal with some frightening moments during my son's worst symptoms. Thankfully for her,Dr Trumble in Orlando, has laid out plans about the future treatment options for her daughters. I told her that for chiarians, THAT is the biggest hurdle to overcome. To have validation of the Chiari diagnosis from the medical community,is the hardest part. Selma, I don't know why it is that way, but it is becoming a personal mission to raise awareness the best way I can!
My daughter is a pt of Dr Ragheb's too. we plan to have the decompression surgery with duraplasty for her chiari 1 in june. She has no symptoms now but Dr R feels while he has no crystal ball, we can prevent permanent neuro damage if we do surgery before she has symptoms. she has a syringomylia too. i just wanted to know your experience with Dr. R. so far, my husband and i felt good about our visit there but i'm nervous about doing surgery since she has no complaints right now.
The member u r replying to has not been active since March of last yr, so u may want to PM (private message) them so an e-mail is sent alreting them to activity....
May I inquire as to what symptoms ur DD has now?...With a syrinx, it is suggested to do surgery to help prevent perm nerve damage....Has this Dr also ruled out all related conditions in addition to syringomyelia?
I have nothing but good to say about this dr! The hospital and staff was great and he received awesome care there. His symptoms have subsided to the point that he has no more of the debilitating symptoms that kept him from living a full life. We consider Dr Ragheb a liberator for his decision to help my son when no one else would!
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