Some guidance needed please

Hello. I am hoping that someone on here can offer some guidance as to what my next step should be...I am not an usual poster, more of a reader butI will try to keep it brief as not to bore you with all of the details...

I was diagnosed with Chiari in late summer of 2013 after experiencing horrible back pain. I had an x-ray taken of my back which showed kyphosis so, prior to my diagnosis, my primary physician had referred me to a physiatrist, who then ordered an MRI, suspecting mini strokes when I described some of my symptoms (if I turn my neck to fast, it feels like it gets stuck and if I attempt to move it I feel a jolt, like electricity, my vision blacks out and then my neck is sensitive for hours after). I saw a neurosurgeon about a month later who dismissed me as "not a true Chiari " patient because, according to the MRI, I only have a herniation on my right side. I called my Primary back as soon as I got back from that appointment and demanded a second opinion because I was treated so poorly and dismissed so quickly. About a month later I saw the 2nd neurosurgeon who had a much better bed side manner but told me that "some people have sensitive necks and that I'm not 18 anymore so I have to be careful when I move my body" (At this time I was only 31, hardly the age to be considered "old".) After this appointment and no relief, I returned to my Primary who then sent me to Pain Management, insisting that my pain and issues were muscular in nature. On my fist visit with him he wrote me prescriptions for 6 different medications including muscle relaxers and sleeping medication and also anti inflammatory medication. I have a history of ulcers and cannot take medication like this because I will get sick. I tried to explain that to him but after 3 visits and getting no where I refused to go back. In fact, I went on a doctor strike and decided to manage my pain and symptoms myself since it seemed no one was listening. I have done a lot of research on Chiari but hesitate to attribute all of my symptoms to it. (I have a fairly long list of weird symptoms that don't have any explanations, like constant blood in my urine) This was working fairly well until a month ago. All of a sudden I noticed that my butt would go numb then I would get a deep throbbing ache in my leg if I was on my feet for more than 5-10 minutes. The same thing would happen if I had to sit for longer than 20 minutes, which I do daily as my job requires travel in a car for at least 2 hours a day. I brushed this off as a pulled muscle and leaned to notice the signs before it got really bad. This was a manageable way to live my life, however last week some weird things started to happen and forced me to return to my Primary. On Friday night, date night with the hubby, we had a whole night planned with out the kiddos. I was only able to make it through dinner before my back started to ache and the numbness set in. We went home, but I was unable to use my usual methods of rest, my heating pad, and ibprophen did nothing to alleviate the pain. My sleep was horrible that night and when I woke in the morning, I felt a lot of pressure in my sinuses and head, plus I had pain and pressure all along my spine. I also noticed that my scalp was really tender and the area right above my temples, on both sides, seemed to be budging. I have a nurse who is a RN and she thought that I had the start of a sinus infection. I looked it up because I have never had one before and the only symptom I had that fit was the pressure in the head but trusted her opinion and bought some sinus medication and rested. My Saturday night, it felt like I had been shot in the face. Things only got worse on Sunday and considered going to the ER, but the one around here is not very good and knew that they would be of no help. Most nurses/doctors cannot even pronounce Chiari let alone know anything about it. By Monday I couldn't take it anymore and made an appointment with my Primary. After listening to my symptoms she diagnosed me with a sinus infection, prescribed me an antibiotic and sent me on my way. I told her about the numbness in my butt, etc and it wasn't even discussed. I have not started the antibiotic because I know this is not it. I am not sick, nor have I had even the slightest cold all winter. I told her my nose runs after coming inside from out in the cold, it seems she based her diagnosis on this.

I have seriously considered contacting the Chiari Institute in NYC but am not sure how the process works. Do I need a referral from my doctor first? My insurance probably won't cover it because I am "out of network" but would attempt to pay for a consult out-of-pocket to at least have something to take to my doctor to give her direction.

The only test I have had is a head MRI. No one has looked at my spine to see if there any problems there, which is odd since all of my issues are with my back.

Sorry to go on an on, but this struggle is going on 2 years now and I know there has to be something that someone, somewhere can help me with. I am only 33 and most days my body feels 80. I am a very active and ambitious person and lately I struggle to make it through a whole day without intense pain. My methods are no longer effective so I need so guidance as what to do next. Or at least someone to assure me that I am not loosing my freaking mind, because some days this is how I feel.

Thanks to anyone who can help.

Hi Christina.

You aren’t losing your mind. Most of us have gone through the same tyoes of issues that you have with your doctors. I don’t really post a lot here either. But you sound like a mix of where I was and where I am now.

If the Chiari Institute is the closest to you, I suggest contacting them to see what you need to do to to at least get your scans in front of their specialists. A referral from your doctor may help in this situation and if nothing else, it certainly won’t hurt anything.

It took me 3 years to find a good set of doctors who were knowledgeable enough about Chiari to get me to the right person. And it took many of the members here much longer than that.

The two main things I have learned here, if nothing else, is that you have to be your biggest advocate and never give up. If we don’t fight for ourselves, who will fight for us?

Good luck!


Definitely get an opinion from a Chiari specialist. A lot if your symptoms do sound Chiari related. You’ll also want a specialist who can see if you have any accompanying conditions like EDS, POTS, or CCI.

re what Not all su

You are already getting good Chiari advice so I am going to add a couple of other ideas - regarding leg and butt numbness. I am a massage therapist who has personally suffered from sciatica. You may want to look into that. Massage therapy, ice and/or heat, stretching/physical therapy can all be good for that. Regarding the weird blood in urine. I also have that and my docs thought it was nothing after some basic tests but I saw a nephrologist and had a kidney biopsy and it turns out I have IgA Nephropathy, which is a chronic kidney disease that false into an autoimmune disorder category. Just FYI if you continue to be concerned about that.

Hello there.. I suggest that you seek opinions of other neurologists.. In my case I consulted 3 neuros prior to my surgery.Also because of the buzzing in my left ear I tried to see ENT.I also went to see Rehab Drs due to the weakening of my left leg and right arm.Lastly because of my blurred vission I consulted an opthalmologistT. Because of the serries of my complain I was advised to have my MRI.There I was diagnosed to have ACM. And all my complains are symptoms of ACM.The problem with ACM is ,it has no medication except surgery. The symptoms don't go away after surgery. ACM progresses as d person gets older based on my readings. just be brave and face the music.

Research shows that over 80% of patients showed symptom relief after surgery. I am luckily in that group. Almost three years and I’m doing great. MRIs show that proper flow of spinal fluid is restored. I think people believe the surgery fails more often than it does because most success stories move on and don’t need online support. Also seeing someone who is very familiar with Chiari and the various disorders related to it can increase the odds of success!

I have had several odd symptoms before and after my decompression surgery. I have a fabulous nuerosurgeon who think a many people who have chiari’s try to pin all their symptoms to the Chiari. I do agree with him to an extent. I am not a Chiari expert but I don’t think the blood in your urine has to do your Chiari.
In regards to your neck and back pain I think you should see a Chiari specialist. If you can’t get to one easily, some doctors will allow you to mail your MRI to them and they’ll have a phone meeting with you.
And in the meantime have you thought about an acupuncturist? They can help with a lot of back and head pains.
Good Luck!!!

As well have experianced all but the blood in the urine and am trying to find cooperative doctors. Just know you are not alone

Thank you for posting! It helps all of us!! You are understood here, and never alone!

Hello Christina, and I'm so sorry for your painful situation. I have an appointment with my neurologist tomorrow and I will be asking for a referral to a neurosurgeon. I have had epilepsy for 25 years along with inner and middle ear problems for about 30 years. The ear problems resulted in a mastoidectomy as the infection was traveling to my brain and had eaten thru my heart goes bones leaving me deaf in my left ear. Both the ear issues and epilepsy occurred between the ages of 10and 15. I I was diagnosed with Chiari about 5years ago, and the doctors dismissed it blaming my symptoms on either my ear because of the headaches and intense debilitating pressure and vertigo, and the dizziness and fatigue on the seizures with no explanation of the neck and shoulder pain. I feel your pain and I am my own advocate because I believe that we have our own best interest at heart nobody else. I have no problem firing a doctor if they don't truly listen to me and what I'm going thru. If the doctor talks more than you do please run because they are not even listening and chances are they booked you in for 15 minutes and is trying to get you out and on to the next patient. Looking forward to my appointment tomorrow to get my referral to a neurosurgeon... I will keep you posted. But in the meantime I will pray for you!