New 9 mm chiari diagnosis

Question

I was diagnosed with chiari malformation 1 last week with a 9 mm hemorrhage.  I have spent the last year trying to discover what was wrong.  I have neck and occipital pain and grinding.  Some days it is hard to walkndue to muscle spacsticity that is so painful.  (and I am a retail manager). I get random pain and electrical buzzing feelings allmover my body.  (like cell phone vibrating) now researching I also know that headache with straining, looking up dizziness, and bladder leakage are all signs too.  I went to dr and blood pressure was through the roof and only found low vit d and said that could cause the pain ... Didn't help ... Tried chiropractor, physical therapy, and massage.  We tried celexa, cymbalta, amatryptaline nothing helps.  I wake up in pain at least hourly.  We ruled out cancer, lupus, thyroid and the list goes on.  I was crying and told dr something is wrong she thought maybe fibro I asked about ms and she sen me for MRI.  It came back with chiari and she said only surgery will help.  I am waiting to see chiari specialist in Colorado in January and she gave me sleeping pills.  I am so scared.  Does anything else help?  I have 2 little girls and I need to be ok for them. God bless you and thank you for your time.

linnielou232 · Accepted Answer

I know exactley where ayou are at right now and it is a scary place. I had the same issues that you are having right now, it took me I think 3 year's to acturally being dx'd. At least you have that process over with and you know what you are dealing with. As I said I know how scared you are. When I found out I had Chairi I didn't even know how to pronounce it let alone apell it. You have come to the right place though. This website has been a blessing for me. It is nice to come here to people who understand what you are going through. I'm also happy to hear you have an appt for a surgeon. Some need surgery to help. It all depend's on how your able to live your life. I had surgery acturally 3 surgeries 16 months ago, so having decompression surgery can be a long healing process, but you have young age on your side. I suggest you talk to a couple NS before deciding surgery, and go with the one you feel more fortable with. I had the doc tell me the same thing about there isn't anything that will help when you have Chairi except surgery, it doesn't get better by it self sad to say. It all depend's on how it is effecting your life. I couldn't live with my head feeling like it was in a vice all the time so I went ahead and had surgery. As I said before I don't regret it for a second, but it is life altering having Chairi. Having surgery isn't a cure. That is where I am at right now in my life. Just trying to except this change of life. I still have a lot of hard day's, but coming here and having every one to talk to help's. Just wanted to let you a little bit about my journey and to let you know your not alone. We all here have been on your journey. We are all just on a different step in healing. Once a chiarian alway's a chairan. So we will be here for you. You in my prayer's and I wish you the best on your appt. Keep us updated.

selmaS · Answer

Having emotional overloads and crying all the time is a chiari issue/symptom......

   Well keep in mind, u r not alone, and listen to ur body and rest when u feel u need it so u can go on the next day.....

  "selma"

Rylanesmom · Answer

Thank you Selma.  My Dr says it's nothing to worry about.  All I want to to is cry and lay in bed:( yet it is time to work so I will put on my I am ok face and muscle through.  I will read up on everything you gave me tonight.  I hope there is a pill to fix that geez.  I know my God s bigger than this but I feel like my cup is running over.  It is nice to have somewhere that you can actually say how you feel.

selmaS · Answer

Blue sclera, that is EDS.....check out this link of EDS symptoms

http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

Rylanesmom · Answer

Can my chiari be what is causing the whites of my eyes to turn blue?

selmaS · Answer

yes, the cerebellum is the part of the brain that controls balance, so if it is herniated and compressed it is no wonder we have balance issues.

 Stay off a ladder!!

Let me know if u have ne questions on the videos.

  "selma"

Rylanesmom · Answer

I bruise very easy.  I will watch the videos thank you so much for talking to me.

Rylanesmom · Answer

Does everyone have balance problems.  I was at work on the ladder looking up to retrieve clothing off a mannequin and almost fell off.  I noticed if I shut my eyes and look up my balance is gone.

selmaS · Answer

Being double jointed is a good indication....do u also bruise easy, and slow to heal?

 Plus u may want to view a few of the EDS videos I posted in the EDS gorup here on MedHelp-http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

    "selma"

Rylanesmom · Answer

Thanks Selma I wonder if I have the connective tissue problem.  I have been telling pcp it is like my tendons a chills hips elbows and neck are too short and pulling.  It hurts.  I am double jointed and was always very flexible but now tight and painful.

selmaS · Answer

U have to click on the Health pages link at the bottom of the page-scroll down to the bottom....in the health pages there are a number of pages with diff info that u may find helpful.

Here is the direct link to the activities to avoid list-http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

 And the poem is at the top, just above the post button, under the Important Announcements drop down.....here is the direct link to the poem-
http://www.medhelp.org/posts/Chiari-Malformation/So-I-Say-poem-by-Dr-John-Oro-a-Dr-that-truly-understands/show/1136687

    "selma"

Rylanesmom · Answer

Geez I wish iPad would quit changing my words!

Rylanesmom · Answer

They gave me tens prior to diagnosis and now I am scared to use it on my neck.  It was a oh that hurts but it's good on my neck because I actually hit he painful spot yet on he occipital I could turn it all the way up without feeling it.  It does not help my neck.  It does help my spasticity in my achillis tendons or a while.  If they are sayin it is safe would absolutely try it.  If nothing else interupts your brain from feeling it while it iso.  It feels relly strang pulsing you muscles.  They just gave it to me at dr office an said have fun when they were saying maybe fibro so better training on unit may help too.  Hood luck!

Rylanesmom · Answer

I have not gotten to sky dive yet either:( I can't find the list of dont's or poem.  I just stumbled across this today.  So you think fling to Colorado for the 3 day wok over is a good idea?

linnielou232 · Answer

You mentioned Tens unit.  I'm really interested with this because I have had surgery as I stated, but still dealing with issues 16 months post op.  I go mond. to be fitted for a Tens unit which was deliveried the other day.  Did it give you any relief at all.  I am anxious to try this because as I have had surgery and was in the 10 percent to have problem's I didn't plan on.  We never know what life has in store for us.  This wasn't what I planned, but what do we do.  Just try to find some relief.  Do you use the unit at all any more?  Just very curious.?

selmaS · Answer

I do not see him, but I have met him....it was at a conference on chiari in Aug of '08.
 Yes, gone are the days of roller coasters, I loved them too....so I know how u feel...and walking can be a chore with this....

  Do make sure u r tested for all related issues as well. like Ehlers-danlos and a few others.

  Posted at the top of this forum is a poem by Dr Oro, it is great, it shows us there are Drs out there that know and understand what we go thru.

 
    "selma"

Rylanesmom · Answer

Thanks Linnie.  Surgery really scares me.  Went to a movie last night with my daughter and there was a wedding and I couldn't quit crying wondering if I would be at hers.  I have only known a few days antis emotional roller coaster stinks.

Rylanesmom · Answer

Yes Selma I am going to Dr Oro.  Do you see him.  We also tried tens unit I forgot to mention.  It really sticks that nothing helps andi find that working all day on my feet kills me.  I am also an adventure lover and last yearvs zip lining and riding roller coasters galore with my kids.  Now just walking can be a huge challenge.

selmaS · Answer

Hi and welcome to the Chiari forum.

 Are u going to see Dr Oro in CO?.....

 Most meds do not help with chiari pain....I agree, and I was always afraid if I had new symptoms they might mask it and I wouldn't know...so I tried not to take too much in the way of meds if possible.

 As linnielou said surgery is not a cure, but may help with a few of the symptoms....not all with chiari are surgical candidates either....the best u can do is avoid activities that trigger ur symptoms.

 There is a list of things to avoid with Chiari and Syringomyelia in the Health pages(located at the bottom of the forum page).

 Surgery also has risks, so ur Dr will determine if the benefits outweigh the risks. This is not something to rush into...so do educate urself on all the related conditions many with chiari tend to have in addition.

    "selma"