What to do

[Mglee78]

6 months ago I started having symptoms , went to dr and had MRI . They said that I did have spots on my brain but they were not the cause of my problems . Upon receiving a copy of all my medical records , I discovered I have chairi 1 with an arachnoid cyst . I have had 2 nuero docs look at my MRI and not tell me this . I don't know where to go or what to do .

[selmaS]

  Do keep us posted...u never know u may be someone to ADD a new Drs name to our list....

[Mglee78]

no i have not had the cine mri , and yes believe me i want the best no matter where we have to go and my husband agrees , i am gonna start the search for one this week and hope they take me seriously but i won't stop til they do . thank you so much for your advice .

[selmaS]

  With Chiari it is possible to have symptoms drastically different for others that also have it, and it is also possible to have something more then just Chiari....

Chiari alone can affect all of our body and how it functions or doesn't....but Chiari also has related conditions that can affect us as well.

Have u had a CINE MRI, MRI's of ur brain, cervical, thoracic and lumbar spine?

  It is very possible that both the cyst and ur Chiari are causing ur issues.....

I strongly suggest if u need to travel to get to one of the top Chiari specialists....do not settle for someone close to home that may treat it as u have more going on and need someone that not only treats but researches how Chiari and related conditions affect us.

[Mglee78]

i  live near paducah ky , as for my symptoms, when it became a "problem" , i was at work ( i used to be a rural mail carrier before this all started) and it felt as if lightning had struck my brain, i have no memory of the rest of the day my husband came and helped finish my route this was on a saturday , by the following tuesday my body was tremoring so bad i was in a wheel chair , and the worse head ache of my life ,the tremors are not all the time now but are daily ,  i have had burning in the back of my head , neck and shoulder pain, numbness in my hands to the point that i drop things often vision problems , extreme light sensitivity , i have times that i have no control over my arms and legs they shake which makes walking difficult , stuudder when i speak, i also have memory loss. i was diagnosed with functional movement disorder ( which basicly means my nervous system malfunctioned and no longer communicates with my brain ), however i do not know which of these symptoms are a direct result of the chiari or if the fmd is a proper diagnoses  

[selmaS]

  Hi and welcome to the Chiari forum.

I see u got info and found the lists of Drs.....

As for the Drs not telling u, so many feel Chiari is an insignificant finding as they do not know or believe it can and does affect us...I had old MRI's that had tethered cord on it which does not always show and I was not told...they only deal with what they understand....that is my take on it.,...egos.

U will want to see a few known Chiari Drs to find the right one for u....

May I ask what area u live in?

And what symptoms are u dealing with?

[kwalker0004]

I know how frustrating it is. I was diagnosed in January. The neurosurgeon and neurologist didn't even tell me anything. My PCP is the one who told me I had this condition. They both chalked it up as migraines. Never went over the MRI with me so I was sent home confussed, scared, and they prescribed Topamax. Got home because the two I seen were two hours away from where I live. My PCP found a NL who was coming to do a surgery and had actually been specializing in Chiari for 15 years. My PCP called him up and he agreed to consult with the both of us. On monday, he met us at the local hospital and for the first since I was diagnosed I felt relieved. He went through each MRI scan with me and pcp. Showed me what they where talking about. And for the first time in a month i just found out my herniation is 6 mm. But its not the length that will have a true chiari doctor concerned. It will be the thickness of the tonsils as that is what has mine concerned. Since mine are thick this could mean I have a CSF blockage or a CSF flow problem. So dont worry to much about the length the doctors are more worried if its pressing up against your brainstem and how thick the herniation is.
Kelcie

[Mglee78]

thank you for your response ,i found the list of doctors and there are several pretty close . before i found this site my husband and i were thinking of going to the mayo clinic or sending copies of everything i have to different nuero doctors in hopes of one willing to take my case.it has been very discouraging not knowing where to go or what to do. i do know this is what i have , it is written in my medical records by two different nuero doctors and i can see it on my mri disk. i don't know how many mm since my doctors didn't even tell me . now we are hopfully on the right road so thank you again

[kwalker0004]

Hi and welcome....
If you truly believe this is what you have look at the list of doctors on this website. These doctors on here are doctors that patients from this site have been treated by and/or liked. Just remember these are not referrals by no means. This site also doesn't endorse these doctors. Next step see if any of these doctors are located in or around you. Dont get discouraged. Many of us do have to travel. As there are so many of us who have this condition and not so many doctors who truly understand this condition. ( I have had this problem and I supposedly have the 2 best hospitals in my own backward). But before you set up any appointments do research on all NLs in your area. Education is the key to your success. Educate yourself on your condition that way when you consult with these NLs you will know when you have found the right one for. Make the doctors listen to you, dont allow them to pass you off. There are other conditions you should wants to rule out as well.