Chiari Online Support Group

Looking for Referral to a specialist

Hi I am looking for any advice on finding a referral to a Chiari specialist in the Midwest. I have an appointment with my first neurosurgeon on 2/27. I would like to see someone who specializes so I can be sure surgery is successful. I have Chiari malformation type 1 with 19 mm below the foreman magnum. I have had very little sleep for a couple weeks now. Any advice on sleeping positions would be appreciated as well. Right now I sleep sitting half up on lots of pillows. I have the head pain that wraps around my neck and at the base of my skull. Numbness happens in my face, neck arms and a little in my legs. Last night I had what appeared to be a seizure, though I was told by the EMTs it was not a seizure, my body was shaking at different body parts on and off uncontrollably and my teeth were chatting so hard my jaw still hurts. I hope to have some answers and solutions soon. Thanks
Kat

Hi Kat, I had similar experiences to the seizure like movements you explained and also have numbness/tingling and the head and neck pain (they became much better after surgery). My advice would be experiment with different pillows, positions, heights and blankets and things to hold onto. What works for me is sleeping on my side with the perfect height pillows (for me this is one thin and one medium stacked). I also sleep on memory foam (I find it holds its shape best and is most supportive so I feel less pull in my muscles so less strain and tingling). Another thing I do is sleep with a long stuffed animal (you could also use a pillow or a punched up blanket), this helps keep my spine aligned and I support my head a bit with bunches up blankets under my chin. I hope these help! Oh, I also elevated the head of my bed with bed elevators.

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Thank you so much for the suggestions on sleeping. How long did you experience the trembling and numbness before you had the surgery? I am anxious to have something done before permanent damage is done!

@SusanH and @Dragonfly, my daughter has these same symptoms along with severe insomnia. When her body is finally totally exhausted, I see the muscle spasms and tremors that you have mentioned. She will not sleep or even lay down with a pillow under her head but she does use them between her legs and knees. She also has a favorite stuffed animal that she cuddles next to her face. She also prefers to lay in the floor instead of her bed the past few months. It seems that her back, neck and over-all joint pain is relieved a little with the floor. She insists that her bed is too soft and hurts her worse. Do either of you have similar experiences? Recently I have been able to convince her to at least lay on the sofa instead of the floor every night ( mostly because she needs/wants me with her and my aging joints and back can only take the floor so many nights in a row :rofl: ). Thank you for your input! Praying all is well for you both.

I have had joint pain off and on too. I find that any position laying flat causes me to have a lot of head pain and pressure and then I wake up shaking and/or numb. So I use about 5 pillows to sleep (or try to sleep) practically sitting up. Susan suggested sleeping on the side and that seemed to help, though my head still aches I at least didn’t experience the trembling and as much numbness when I slept on my side. I would rather have the pain than become numb, and shake, I hate that feeling. Does your daughter have a surgery scheduled? As far as I understand, surgery is the only way they can treat this? I am sorry that your daughter is going through this. Be a strong mama! Praying for both of you!

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I’m so sorry to hear that you’re suffering so much too. At this time she does not have a surgery scheduled…in fact we are awaiting a second opinion from Boston’s Children’s Hospital because this far all the neurologists and neurosurgeons (except one who thought surgery would do more harm than good for her at that time) have tried to explain away her symptoms with migraines! And they have completely disregarded her other neurological symptoms such as the numbness, visual and auditory hallucinations, difficulty swallowing, shortness of breath, vertigo, insomnia etc. They did agree to have genetic testing done to check for EDS and agree that she has Hypermobility in all her joints. We’ve seen countless specialists in order to rule out any problems with the organs themselves. All tests have come back showing she is perfectly healthy and there is no reason she should be having any of these problems. They also have all ( with the exception of the one neurosurgeon) said that her Chiari is “merely a notation on her chart”! I honestly believe that the one neurosurgeon we saw that said it wasn’t time for her surgery yet would change his mind as she has significantly worsened since he saw her in September. Unfortunately, he does not accept her insurance and now I have a rather large bill due to him that I simply cannot pay now. I have been out of work since she started getting “sick”. She is on intermittent homebound for school and since January has probably only been about 10 days total. Her loss of vision makes schoolwork almost impossible. I am praying that Boston’s Children’s Hospital will have a new course of treatment for her and possibly even look toward surgery before her neurological symptoms worsen even more as I have learned that surgery is much less effective after these types of symptoms begin. Please know that we both pray for each member and family represented here! Thank you for your response and please keep us updated on how you are doing as well. May God give you comfort and healing :purple_heart:
Best wishes, Angel

Dragonfly,
This sounds a lot like my story. I was sleeping in a recliner for about a month before my surgery when my symptoms became very severe (after having my neck cracked by a chiropractor, before I knew I had Chiari, in a effort to relieve numbness and shoulder/back pain) I found that lying flat in my bed made my neuro symptoms much worse and also caused really bad apnea ( central sleep apnea). I also had what felt like what I thought could be seizures, waves of hot pain going through my body often times starting in my core.

Not sure where in the midwest you live but I am in Kansas. Dr. John Oro is a neurosurgery specialist in Aurora, Colorado that has been practicing for over 40 years and started the Colorado Chiari Institute. He did my Chiari decompression and reconstruction surgery in 2014 and I had great results. Dr. Oro is no longer accepting new patients but is serving as the Medical Director of CCI. They have two other experienced neurosurgeons as part of their team now. The staff and facilities there are top notch. Good luck with everything! Keep your head up I believe things will get better for you.

Thank you so much for the positive encouraging words! Is it normal for symptoms to improve on their own? I am feeling better right now, both at night and during the day. I wonder if my symptoms will come back or could I have something else causing my symptoms in addition to Chiari? My daughter is now sick with a fever and is complaining of a headache and neck ache and stomach ache. Is it possible to have a virus that causes Chiari symptoms to flare up? Thanks!