Hey friends, I didn't see this board when I first joined the site a few days ago.

I'm Raigne, and I was diagnosed with ACM1 when I was 38 years old. I'm about to turn 48 in May. I spent the majority of my life with all the typical ACM symptoms, pain in the back of the head/neck, shoulder pain, not feeling hot or cold in hands or feet. No balance, always falling down and just pain, pain, pain.

Tons of MRI's (once they were used regularly), numerous Neurologists (none of whom were trained to spot either ACM OR Syringomyelia - which I also have) and a six week migraine where I went into the hospital for a week. Finally a new Neurosurgeon came to my neck of the woods (back then it was Dallas/Ft. Worth, Texas) and before my first office visit (after he got my records from my reg. doc) he sent me for an MRI. I walked into his office with my husband and 1 year old son and he told me he knew exactly what was wrong and how to fix part of it.

So in October of 2004 I had the decompression surgery. I literally woke up from the surgery...BRAIN surgery...feeling better. That pressure where you feel like the back of your head is about to explode was gone. Of course I was bald and rocking a nifty new zipper scar, but the ACM pain was gone.

Unfortunately, my Syrinx got worse over the years. I was told I couldn't pick up my little boy again as lifting anything over 10 lbs was a no no. We had work arounds for everything.

I'm not sure if any of you have the following experience, but I thought I'd put it out there to let you know you aren't alone.

Since the surgery (and it's not because of the surgery, it's just because my body was so injured for so long - 38 years), I've been diagnosed with the ACM, Syrinx, Fibromyalgia (it sucks, btw), Osteoporosis, Reactive Hypoglycemia and Allergic Fungal Sinusitis.

Next week I begin testing for Multiple Sclerosis as I have a majority of those symptoms as well. Syrinx can mimic MS to an extent, but the stuff I'm dealing with can't be laid at Syringomyelia's doorstep. I've already been told by a few dr's that they believe I have MS, I just need to go get the official diagnosis, or a diagnosis for whatever is going on now.

I continue to rest my neck often and continue to get checked out by MRI's periodically to make sure all is ok and no surgical intervention is again needed. I'm with a great pain management clinic and I just play the cards I've been dealt to the best of my ability. I'm losing the ability to walk again (I have a couple episodes a year where my legs "go") so I've been staying home a bunch and just resting. When you're constantly tired from dealing with pain, being able to stay home is a good thing. I'm blessed that Syringomyelia is on the Social Security Administrations list of acceptable claims for SSDisability, though it's hard to get approved on a disease that few have heard of. It took me trying once on my own and then hiring an attorney for the appeal to finally get it.

So, I'm going to read thru posts and see how everyone is doing and see where I can help, encourage or just make ya laugh.

Hi Raigne
I am new here too! Sorry you are having trouble walking. I too have been tested for MS. Actually that's how I found my chiari dx. I have had numbness in my feet and decreased sensory awareness to temperature in my extremities as well. I also recently have had tongue numbness???

The chiari really took me by surprise. I was just diagnosed yesterday! I have read a lot about it but I still feel so uneducated. My neuro really did not spend time with me at my appt. he basically told me he could refer me to a neurosurgeon if I wanted....of course I do not wnt brain surgery! But I feel so disappointed that there is nothing I can do to help me with the numbness.

I was really thinking it was MS. My MRIs were negative. I am getting a second opinion so I can hopefully find a neuro who can better educate me about the chiari. I don't even know if I am to restrict any physical activities??? I feel my neuro basically answered some brief questions then showed me a website and said come back in 6 months.

It's so scary knowing part if your brain is not where it should be. I am still a little curious about MS. As far as I know I do not have a syrinx. My chiari is at the 5mm mark.

Let me know how your testin goes. I was actually just researching chiari and ms. I am curious if anyone can have both or that the chiari really does mimic ms. I want to know how it can cause similar symptoms but not be a demylenating disease? Also if you have numbness or sensory issues it can't be treated like it can with ms?

Oh Mimi, I am so sorry your doctor was such a jerk. Go to (if the link doesn't show Google American Syringomyelia and Chiari Alliance Project) to get good information. You should only deal with a doctor who actually knows what Chiari is, how to deal with it, and what options to give you.

Like you, I was very symptomatic. I opted for the surgery because I couldn't deal with the symptoms anymore. The Chiari stuff was fixed, but they also discovered I had Syringomyelia and the spinal cord damage done couldn't be fixed and the syrinx just can't be fixed/changed, etc.

I'm still in the midst of waiting for testing results now. The neurologist that my neurosurgeon sent me to is extremely thorough. I've had MRIs not only on my brain and cervical spine, but on my lumbar and thoracic spinal cord as well. Plus I had the longest EEG of my life last week. LOL Now we wait to get results. My weakness is getting worse, the double vision is happening more often and everything wears me out. I'm hoping THIS time a doctor will figure something out sooner, rather than later. If it is MS they need to start me on preventative meds asap as I'm sinking fast and I don't have time for that stuff. I'm a wife, mom and artist and have far too much to do to let anything get me down.

Please make sure you go find a new doctor. The website I gave will be able to give you options in most areas of the US.

Keep me posted on how everything goes. It sometimes takes me a few days to get back here to check on things, but I will come back to see how you are.

Thanks for your help

I scheduled two appts with two different neuros for their opinions. I live in NJ. I'm going to try Philly docs (Penn and Jefferson) to hopefully get some answers. I too am a mom, and work as a nurse. I'm not sure if I should keep both appts or just pick one??

Can I ask you a question? Did your neuro see the syrinx on your MRI? There was no mention of that to me. I'm just very curious what causes my symptoms (numbness, have altered sense of temperature on some extremities, and slight dizziness at times). Would a rt sided chiari cause these symptoms or a syrinx?? That's where I get confused!

Thanks again for your help. I know I am new to this but I'm here for you if need someone to talk with

For now, I'd keep both appts. You can always cancel the 2nd one if the 1st new Neuro makes you feel comfortable with his/her level of knowledge/compassion.

My syrinx was definitely spotted on the MRI by the NeuroSURGEON. None of the Neurologists I'd seen over the years, that had MRI'd me, had seen either the Chiari Malformation OR the syrinx. And looking back at some of the older MRI's, they were definitely both there.

Since I went so long undiagnosed, it's hard to know when the Syrinx formed. There are actually two different types of pain relating to them. The Chiari always felt like I had a vice grip on my head and it was squeezing and causing migraines in the back of my head. The pain radiated to my shoulders and upper back. I was (and still am, but due to other diseases) very clumsy. Always tripping and falling and dropping things.

The Syrinx pain. Well...that feels like I'm being ice-picked in the back of my neck. I have to keep myself under tight control at all times, because even the narcotics can't get me below a 7 on the 1-10 scale. I'm always in excruciating pain. But if I keep a tight lid on it I can stay on top of the pain. I can live at a 7. At a 9 I feel like I'm going insane from the pain. The problem is that I spent a lifetime doing things that you CAN'T do if you have a syrinx. You can't do anything that causes your CSF (cerebral spinal fluid) to "surge". Like bending over and picking things up. Heavy things. Anything over 10lbs was forbidden to me after surgery. I am VERY symptomatic with the syrinx, too. Although it's hard to tell if that's it or because I also have Fibromyalgia, Osteoporosis, Reactive Hypoglycemia and Allergic Fungal Sinusitus along with this "probable" (dr's words) Multiple Sclerosis diagnosis I"m facing right now. It's what came first - chicken or egg type of deal for me.

I guess what I'm babbling like an idiot about is that some people don't even know they have these things until some trauma happens (car wreck, bad migraines, etc) and a great dr sees the Chiari and/or the Syrinx. Me? I grew up in pain, so we always knew "something" was wrong.

Your Chiari WILL cause the symptoms you are questioning for sure. Those and a "cape of pain" are all typical Chiari symptoms. I hope you can go to the website I mentioned above (but can't link as I don't have enough posts on this website yet for them to allow me link priviledges). You will get a TON of resource help there.

I hope you are having more pain free days than pain full.

Hey Mimi,

I wanted to come back and tell you that the test results came back and it wasn't MS. I have been diagnosed with Epilepsy. They also found a tiny cyst in the very center of my brain that they said is "nothing to worry about". Yeah...like I'm not gonna worry about that. LOL So now I'm on Epilepsy medicine (Keppra) and learning all I can about Epilepsy. My mom (a retired RN) says I never had anything that would make people think I had epilepsy, but I can remember in my 20s having this feeling of tensing up and tensing up and kept going til I got a POP! feeling and my entire body would do a big shake like a dog getting out of the bath. Then I'd be super tired and have to sleep for a bit. The neuro said those were seizures. I've only been on the medication for a week and last Saturday night I had a true grand mal seizure while asleep in bed. My family is a bit freaked out, as am I. The neuro said that the type of seizures I'd been having all along can easily flip to grand mal. Well, I flipped and now any seizure I have will probably be grand mal. BUT, it's just happening til my system gets enough of the meds in it, then I shouldn't have any more seizures unless I forget to take my meds. Believe me....I won't forget.

I hope you're doing well and getting answers...

(((Hugs)))

Hi Raigne, My names Toni from Pittsburgh, PA. I am twenty years old and I was diagnosed with Chiari back in 2011. I was having severe headaches and tingling in my hands and feet. I talked to multiple surgeons and they didn't recommended the surgery since I was so young and the symptoms weren't unbearable.

Two years later the headaches were getting worse when I would sneeze, cough, or strain myself. The headaches were to the point where I couldn't move at the peak of the pain. I consulted with my doctor and he gave me headache medicine and something for the tingling in my hands and feet. About a month later I woke up and couldn't feel anything from the waste down. Lost control of my bladder and all. I went to the hospital and my neurologist and a surgeon I saw didn't think it was the Chiari. I was in the hospital for about a month and a started getting feeling back slowly, I did PT and all and started walking again. The tingling was still there and the doctors didn't know why I went paralyzed and honestly didn't care to figure it out.

I was determined to find the right doctor and I did. My PCP referred me to the Dr. Bookwalter. He requested a cine MRI. We discussed the results and he said he believes all my problems were coming from the Chiari. He told me he thinks the surgery would relieve most if not all the symptoms. I thought about it for two weeks and decided to go with the surgery cause I couldn't live the rest of my life in the pain I was.

March 26, 2014 Dr. Bookwalter and his wonderful team did the surgery. I also woke up feeling AMAZING! All pressure was pretty much gone, no headaches since, and no tingling at ALL. My wound is healing up wonderfully. I have been putting Cocoa Butter and Vitamin E oil on it. The only thing I am worried about is I slipped up and lifted my niece, who is 35 pounds, the other night. I haven't been able to move my neck since. It hurts BAD to even press around the incision. I see my doctor again May 6th for a follow-up so I am going to wait it out, just in case its just a pulled muscle.

I hope your journey brings nothing but good news to you.