Just been diagnosed yesterday!

[Benita1234]

Hi everyone my name is Benita and I'm from Alabama.  I have just been diagnosed with Chiari level 1.  I have had tons of symptoms and never knew what was going on til yesterday.  I am trying to get educated about this rare disease so I thought I would start here.  My best friends sister is having the surgery right now has we speak.  What are the odds of her sister having it then now me.  But anyway I was wondering if there were any good doctors in Alabama or close by.  I am close to the Mayo Clinic in Jacksonville and might go there or where my best friends sister goes in Miami.  I am original from South Florida.  I was wondering what are the steps I need to take first.  I am having an MRA today because I am not getting any blood flow to the left side of my brain.  A couple of days ago I was so weak that I could hardly walk and I couldn't verbally express what I was thinking.  He sent me for an MRI and found the Chiaris.  I have herniated disks in my neck that are also pinching my spinal cord and spurred bones as well.  I have pains all over my body all day, fatigue, headaches, frequent urination, foggy head.  You name it I got it.  Any information you guys have would be greatly appreciated!  I don't know what the next step is after the MRA.  My best friends sister, who recommended this site, told be I needed to find out how much spinal fluid I have built up through an MRI.  I'm glad to find such a wonderful support group and any information of what I will have to deal with in the future would be great!!!  Thanks!

[Rahe28]

Hi there and welcome to the family :)

I was where you were three months ago. Being educated on Chiari and its related conditions and finding the right specialist/NS is necessary part of all of our journeys. Have you checked the thread here or posted and ? to see if anyone knows of anyone? Not sure what part of Alabama you are from but I know of two good NS here is Louisiana that are educated on Chiari. I know it is a long drive but alot of people have to travel to find a Dr. I really got lucky to find one here. I believe there is one in Mobile, Ill check for you and try to get the info. I have the all over pain, and I find that by taking a hot epsom salt bath helps....not sure if you have tried the epsom bath yet. Not alot that you can do about the fatigue other than what Selma has already suggested. I do notice that one strong cup of coffee with a bowl of friut to pick on throughout the day tends to help a little with the grogginess and fatigue. I am so sorry for the reasons that have brought you to us, but am happy to welcome you with open arms :)  Like the rest have said, if you need info or just need to vent or tell us a story, we are here. I have found some wonderful people here, and I am sure you will too.

[selmaS]

  It is possible that u also r in need of vitamins and supplements....ask ur PCP to do blood panels to check, vit D, B12, magnesium and potassium, calcium.

Once u find a NS they can give u a NL to work with they know them the best.

[Benita1234]

Thanks guys for all of the support.  I am still unable to find a good neurologists.  And in pain constantly.  My muscles feel like they can not hold up my body,  I've been taking hot baths and using a heating blanket and it gives me some relief.  But I was wondering if anyone had any suggestions for all over body pain and the fatigue is terrible.  

[deadmemory]

Hello,

I don't have any better advice to give you, I just saw that you were new and wanted to welcome you to our chiari family!

Krystal

[linnielou232]

Welcome and I'm so happy you found this site.  We are here for support, info, and just guidance.  I had the issue with the bone spurs in the neck along with Chairi and it hurts I think even worse because they rub on the spinal cord.  As every one else suggest find a specialist that you feel comfortable with.  The journey is sometimes long because not a lot of NS understand.  It sound's like you already know you have a flow blockage so finding a NS now is what you need first.  I'm happy to hear your sister's friend is doing well.  This will also let you know it's not so bad.  Getting educated on this and having support is a big plus.  We are here for you.
Linda :)

[selmaS]

  Well rest when u need to and listen to ur body.....

   Glad that ur friends sister's surgery went well.

  

[Benita1234]

Thank you both for the information.  I am searching now for a specialist.  My friends sisters surgery took longer then expected but was successful.  I have had alot of neurological symptoms as well as pain which is the worse.  I am anxious to find a good dr.  I had an MRA yesterday and I now have some blood flow to the left side of my brain.  But very little.  I am unsure what the next step will be until I find a good doctor.  Very tired and weak today.

[cash242]

Hi and welcome! One thing that continues to amaze me as I learn more about chiari, I have had the dx 15 months now is that you willl find lots of people in your life that have this.  My denstists wife had it and my volunteers daughter and my neighbor and the list continues to grow as I put myself out there.  I enourage you to find a specialist as that is the most important part it.  Please use this forum for all of your questions I have been blessed to find many wonderful people on different parts of their journey to walk me through mine,  Best of luck and I pray your sisters friend is doing well!

[selmaS]

  Hi and welcome to the Chiari forum.

First contrary to what u may read on the internet, Chiari is not a rare disease, in fact it is a condition, and not rare at all, 1 in 100 have this where 1 in 1000 have MS...the only thing rare is well informed and experienced Drs.

Going to larger well known hospitals and institutions is not always the best way to go, as they may be well know for cancer treatments, but not chiari....u need a Dr that is a specialist in this area and not just a NS that treats it.

  I pray ur friends sisters surgery goes well and she has a smooth recovery.

We do have a list of the members drs on here , it is not meant as a referral  just a means to help u get started researching Drs.

  Make sure u get further testing to see if u have a syrinx, tethered cord, ehlers-danlos, sleep apnea, ICP....u already mentioned the disk issues, u should also look into vitamin and mineral levels as most of us do have low Vit D, B12, magnesium.,potassium, calcium.