Welcome to the Chiari and Syringomyelia Forum...<img alt="Blank" class="icon_img_ww push_pin_icon" src="//dmg98m9mr6pi1.cloudfront.net/RoR/images/blank.png" />
Please read this message before you post!
This is a good place for info and comfort.
If you are here, then you, or someone close to you, has probably been diagnosed with Chiari, or a related condition, such as Syringomyelia. Or you are trying to diagnose yourself.
We are not doctors or health-care professionals. We are not qualified to give you better advice than your Doctor. This is simply a gathering of like-minded people sharing their experience and what we have discovered and hopefully putting things in “Plain English”.
Most of us either have Chiari or are close to someone who does.
With that said, I'll try and give you a little primer on what's going on;
Chiari is a congenital malformation of the brain - you were born with it and over the years it's gotten larger.
Basically, a part of your cerebellum (lower-back part of the brain) is expanding out below your skull into your spinal column. This is called a cerebellar tonsil herniation. The doctor might have put a number with this - such as “5mm”. This is how far below the skull in millimeters the herniation has reached.
Chiari can cause problems with sensory perception, balance/coordination, memory/concentration, severe headaches/pressure in the skull and other issues.
If it gets large enough it can start causing problems in the spine - blockages of spinal fluid called syringomyelia (or syrinx). This can cause other serious issues - including paralysis if not taken care of.
Chiari isn't really considered life-threatening, but it is life-changing. There is no cure for this, but there are steps that can be taken to lessen the symptoms. Talk to your doctors. Surgery is often needed, but some people prefer to try other ways first.
Make sure you have a Chiari Specialist as a neurosurgeon and neurologist. This is the most important thing you can do at this point! Not all neurosurgeons or neurologists are specialists at this. Make sure yours is.
We know what you are going through - to a point. Everyone is, of course, different. A lot of us have had, or need the operation - or are parents or loved ones of Chiarians
If you need to talk, a lot of us check these boards daily or at least several times a week.
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I was diagnosed with a syrinx 9 years ago when I lost the sensation in my right foot. Since then, the symptoms have got worse, I have awful pain in my ribs, tiredness and no touch sensation on my back and arms. I get horrible pins and needle like sensation in my fingers and knees if I overdo things. My GP doesn't understand, I have a great neurologist who comprehends. It gets me down that my GP is not interested, even though she is sent letters from my neurologist and I have shown her info from the net. I have had other complications and recently had my stomach removed and part of my bowel as neither worked and was at risk of causing cancer. The fact that they were removed should show how severe the problem is, but still my GP does not seem to care! Am I the only person with this problem?
Unfortunately too many with a syrinx, chiari or other related issue do have the same problem with their drs. The best thing I can suggest is to locate a dr that specializes in chiari and syringomyelia.
I personally do not have a syrinx, and know that the members here that do, can offer a more detailed account of what they r going thru.
Please see the Health Pages for a list of chiari drs for u to begin ur research to find a dr that will be better suited to help u.
I had joined here 2 yrs ago,, lost my ID so had to change me username to jenthewren08 from achyten....... BUT,,, here is what I"m so concerned about..... looking for suggestions and HELP.
In September 7th, 2009, I had an MRI that reported as showing some mild tonsillar ectopia.. The cerebellar tonsils protruded through the foramen magnum for about 4.9mms.
There was no kinking of the CC junction and the forman magnum didn't look excessively ( this word bothered me) ,,,,,,,,as the neurologist says did not look excessively tight,,,, to me it meant that it must've been tight....to say that...
For one thing, I did not like the Neurologist to begin with! He said that this matter had been long standing,, and was of no clinical concern...
However,,,, I feel different,, with having numbness in my hands, my legs too and feel very weak, with lots of pain.. in fact I have to take narcotics to help with all the pains I have.
I also suffer from fibromyalgia, and have for 35 yrs or so..
About 2 months or so ago,, I awoke one morning paralized,,,, was alone, so layed there in horror....... but I did not go to the dr. to tell him this right away... as I don't have faith in my GP either. My GP, told me that I had a tumor when I got these results, and never did bother to explain anything to me.. When I"d bring it up to him,, he'd act like i didn't say a thing to him,,,, he was just so ignorant!! I know he was sorry that he even said that I had a tumor....He most likely didn't know enough about my test result, to begin with...
So here it is March 2011,,, and am no smarter with this all.....although as I"ve read,, most seem to have headaches,, where I don't,,,, I only feel some pressure at the back of my neck...along with neck and shoulder pain...
I"ve had an MRI of my spine,, and it shows that I have mild levoconvex scoliosis.,,,,DDD at
L4 through S1 levels,,,,,bony lateral recess stenosis on the right in below the level of the exiting L5 nerve root,,,,,,grade 1 L5 spondylolisthesis with accompanying bilateral spondylolysis..................etc....whether these things have anything to do with Chiari 1 I don't know..............but could sure use some help with whether you think I should have another MRI or not, as I worry a lot.... so any help would be greatly appreciated.......
I also had an Ultra sound of my Cervical Spine, that showed mild-to-moderate spondylotic changes, with lipping of the anterior vertebral body margins. There is mild accompanying disc space narrowing at C4-5 and mild to moderate narrowing at C5-6. The exit foramina are maintained. There is mild left C4-5 facet joint degeneration. Generous sized C7 transverse elements are noted.
Also mild bilateral sacroiliitis...again,,, I don't know if this has anything to do with Chiari 1.
How wonderful it would be to have support from my husband,,but no, I never get any at all.
I envy the lady whose hubby is doing research for her,,,,,,,, she's soooooo lucky!!! Good for you!!! I forgot who it was,,,sorry.....
Hi achyten, I remember ur old sign on name : ) u can get help from MedHelp deleting the old account so u do not show 2 accounts...and I will reply to all ur concerns via a PM....I am glad to see u back on the forum, but so sorry u r still in a stalemate with treatment and a dx.
Any one have advise for young children. My son is 5 years old and was recenlty diagnosed with chiari 1 malformation, the neurosurgeon wants to do surgery asap however my husband and I are hesitant because we found all this out because he was having movemnet problems with his eye. He doesn't have anyu headaches or anything like that so to put him throiugh a surgery seem extreme. Any advise I would appreciate it.
For a child this age it may be diff for him to communicate symptoms he may be having as he may see them as"normal"...and not a symptom. Same thing goes for HA's, not all with chiari will have them..and not many realize that asking if u have pain with strain does not compute too well...ask if he gets head pains when he moves his bowels....let him know this is not "normal"...but if he has always had it, he may not think nething of it.
Find a true chiari dr for pediatrics...not just a NS...there is a big diff.....
Ask y they want to do surgery...eye issues is not uncommon for chiarians.....but u want to know if ur DS has a CSF obstruction....and over crowding. Also, check for sleep apnea.....too many drs do not check for this.
Hello..We are looking around the country for help for our 16 year old. Her chiari symptoms have worsened and she takes pain meds to make it through each day,
She has a reflexed odontoid process and the neurosurgeons that we have seen feel like we'd be opening a can of worms if she had surgery. We are looking for an expert with tons of surgical experience. Any suggestions?
U r looking for a DR, not knowing where u live I can only give u a link to our list of Drs we compiled with the members here of their own drs....iu have to research all drs on the list, and know this is not a referral, just a means to help u get started with ur research.-
Hi SelmaS! For about 3 yrs now I have been experiencing pain in my right leg that felt like it was on fire. Over the years the pain has gotten worse. The lower right side of my lowerstarted to hurt, then my right hip. Last yr I noticed that I couldn't distinguish hot or cold with my right foot. I had been going to so many diff doctors and had gotten so many diff diagnosis but nothing they did worked. My chiro knew that I wasn't making this up and he referred me to another othopedic (3rd one). He had me get another MRI of my lower back and that is when something showed up in my thoratic spine After having an MRI of my whole entire spine I was diagnosed with Chiari 1 with a syrinx and was referred to a neurosurgeon. He told me I would need surgery so this past Jan I had undergone surgery. It's been 3 months now and I am having a lot of pain in my left shoulder that goes down my arm and also have pain in my upper back. I also been depressed and don't feel like I can talk to my dr. about it. ( I don't think he believes I am still in pain) is it normal to still have pain and be depressed?
If ur pain is worse then b4 surgery, u may be having one of a few issues.....
Were u checked for tethered cord?...that can cause u to feel worse post op.
Were u checked post op for ICP?
The depression is pretty typical...specially at 3 months...I remember that is when I began to notice many of my symptoms coming back...what I did not know is that is part of healing and it doesn't last.
The way I feel today at almost 2 yrs post op and how I even felt at 1 yr post op is drastically different.Recovery can be slow, and what u do activity wise can affect ur recovery.
I just received a diagnosis of cerebellar tonsillar ectopia from my doctor this morning. She called me back this afternoon to tell me that she had talked to a nurosurgent and that he had told her that I need an other MRI and he think acording to the first MRI that it's most likelly Chiari malformation. My doctor did not seem woried, she did not give numbers (I see that you mm and others). But ready a few post here made me nervous. But I'm also relived to know that I'm not imaginating my pain like my previous MD had told me. What I am to expect? I need guidance, thank you.
U deff want to make sure u have a NS(neurosurgeon) that is a true Chiari specialist.....and u will want to have more testing done...such as MRI's of the cervical spine,thoracic and lumbar spine to rule out a syrinx and tethered cord and other issues with the disks.
U will also want to have a CINE MRI to see if u have a CSF obstruction and overcrowding....depending on ur symptoms and how the chiari is affecting ur overall health u may not require surgery now or netime in the future...it all depends on what the tests reveal.
I just found my sisters and brothers after 41 years. My oldest sister is 50 yrs old she has chiari with syrinx. around the time i found my sisters and brothers i was told that i have a thoracic spinal cyst this was after i was in the er for severe back pain that radiated from the right thoracic area to right breast bone area i could not breath in deep, reach for anything or just move. I have been having weakness in my legs and arm weakness. Recently I have had epidural blocks and also intercostal injection. I went to a neurologist and he started me on neurontin in which it doesnot help. I also have lower lumbar bulging disk, and cervical bulging mild stenosis and degenerative joint disease. My sister had surgery but still has syrinx. The dr told me that thoracic cyst are rare and i am wondering if I also have syrinx dont know need answeres i told the dr about my sister having chiari wondering if chiari is congenital
Yes, chiari is congenital and so is syringomyelia(syrinx) also called cysts...so u most likely already have that...the issue is, were u checked for chiari?
Also, with the disk issues were u tested for Ehlers Danlos syndrome?
And the reason that many drs feel a thoracic syrinx is rare is bcuz a syrinx can be congenital too, or come from an injury.The thoracic area is protected by the rib cage, so it is less likely to have sustained an injury to incur a syrinx..and that is the only instance of a syrinx most drs associate them with. U really need to be checked for chiari as it is a possible reason for ur syrinx forming.
This advice is really helpful, its good to hear from people who have felt the effects of syringomyelia first hand. Like you said it is life-changing and causes serious issues. I would hope that I and others can be as understanding and care as you. http://www.chiariinstitute.com/syringomyelia.html
Thank you for reposting this. It is great to be able to share with family members so they can understand what the condition feels like and what anatomy is affected by it. It is so much more clear and to the point than what I have been able to find on the internet.
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