8 thoughts on “Chiari Support Groups

  1. Brenda

    Hi,

    My husband was diagnosed with ACM type I in August 2009. His only symptoms were severe headaches with coughing and over the last few months, worsening numbness and tingling in both arms and hands. He had decompression surgery 2 weeks ago. He has not had any numbness or tingling in his hands/arms since surgery. Overall, I think he is recovering well, but he is having headaches everyday (the headaches now are different than pre-op). Some days are worse than others. The headaches do eventually resolve with pain meds. I am hoping someone out there can tell me if they experienced this same thing post operatively? Will the headaches subside?

    Thanks!
    Brenda

    Reply
  2. Susan

    I had the surgery in 1997 when I was 11 years old. I still get headaches and migraines. They are not as bad as before the surgery and the other symptoms I had have never come back. I know that some of the headaches I have are related to stress and feel more like a tension headache. I usually take pain meds when the headache first hits, and then use a cool pack and get some rest. I don’t think my headaches will ever completely go away, but I have found that I can do some things to minimize them, and be fairly comfortable. I was wondering if your husband or others that have had the surgery wake up in the morning with soreness of neck?

    Reply
    1. chiarianmedic Post author

      I hate to hear about someone in your situation. Surgery at 11 y/o it awful. Funny thing. This blog is mine not my wife’s. LOL. That is ok. Yes I still wake up sometimes with a sore neck. The muscles learn new things post surgery but they don’t always forget old things. Easiest way I can say it. Yes I do still have occasional headaches for the most part. Sometimes physical stress and sometimes mental stress. Also I have noticed that when the barometric pressure changes suddenly this can bring on a headache, especially when the pressure raises quickly like with a sudden storm. My wife bought me a chiropractic pillow and that helped the neck stiffness in the mornings and a good dose of a busy day that is not a long day helps. In other words go to bed tired and ready to sleep but not exhausted, over done it day. I hope you have many good days in your future and keep in touch. P.S. I am sorry I took a bit to get back to you we as a family have been super busy and I haven’t kept track of my blog the way I should. Take care and be safe. Kyle

      Reply
  3. Frank

    Glad to see you are doing better. I’ve been following your prograss. I too have a small herniation but with big symptoms. I see you were at Cleveland clinic. What was the surgens name, the one you had problems with? I see a Dr Bxxxxx. Same thing happened to me. My neurologist stated that my herniation is probably the source of the problem. Refered to the surgen who treated me un-proffesionally. Want’s me to go to chronic rehab 4 weeks for 8 hours every day without a diagnosis as to why he’s sending me there!!!!! Crazy!!!!

    Frank

    Reply
    1. chiarianmedic Post author

      Thanks for following Frank and thanks for stoping a line. It was Dr Luciano that gave me conflicting information at Cleveland clinc. Pittsburgh was even worse though. Cleveland has two new Neuros, Dr Di and Dr Bejani that are doing good things though. Hope that you find relief in some way.
      Take care and be safe. Kyle

      Reply
  4. Pat Rowland

    I have a friend whose 17 year old g’daughter has just been diagnosed with chiari malformation and been referred to a NY specialist. However, they have learned their insurance will not cover surgery there. Do you have any suggestions for them?

    Reply
    1. chiarianmedic Post author

      If it is the The Chiari Institute (TCI) they do not accept any insurances as I understand it. Sorry to hear about the situation. I would suggest contacting the Insurance company and seeing what their policy is for specialists that are not in network or see if they have a location that is in network then research that provider. I don’t know where you are located but there are other places out there that do as good a job if not better than TCI. TCI has been controversial over the years. Don’t get me wrong I have heard of people having success with them and then there are of course the horror stories. I can praise Unniversity of Virginia myself, and I know that Cleveland Clinic has a new Dr. there doing excellent things for Chiarians. I do not reccoment Pittsburgh at all though. Of course this is a matter of opinion. LOL. Drop a line to me and let me know how things work out. Hope this helps some as well.

      Reply
  5. Tiff

    I was dx with Chiari I (20mm) and a retroflexed odontoid process in 2007. I was seen at UVA, but ended up having my surgeries at Duke University in 2008. The first surgery was to remove the odontiod process and then wait and see if I had to have a decompression surgery.

    But things went terribly wrong 2 months later. C1 ended up breaking apart and the other vertabra were shifted around. This kind of complication had never been seen before. I was then put in a halo and in traction overnight and then had a fusion surgery the next morning. When I woke up from that I could only move one finger. I had another surgery the next afternoon.

    I was in the halo from January 28th until May 21st. I had to be inpatient at a rehab hospital for 5 weeks and did learn how to walk again. Aside from being fused from skull through C5, I am now actually doing okay. My speech is still a bit slurred from the paralysis, but that is getting better.

    Pain for me is manageable. Just as everyone says there is pain, but it is different. Because of the fusion, I was not able to return to my old life, but I am doing some things I know I would not have if it weren’t for this new life style.

    I am just so very grateful my quadraplegia was only temporary. Having had a trach, first a nasal gastric tube, then stomach peg, and a halo, life looks pretty good

    Just like everyone else, I got the run around with doctors. The only resource at my fingertips was the internet and I spent hours searching and researching trying to cram into my brain what a neursurgeon already knows: terminology, risks, procedures, etc…….

    Most doctors hated that I was going online, but I needed to be as educated as I could be to ask questions and make an informed decision. The neurosugeon’s job was only going to last a few hours. It was me who had to live with the decision for a lifetime. I needed to trust and feel confident in the doctor and that this really and truly was my only course of action.

    Aside from terrible neck pain, right at the base of my skull, I had few other symptoms. Later I developed a down beat nystagum. I still have the rotational nystagmus. But that is controlled by a med.

    Overall, I am glad I had the surgery. It was a scary road to take. What I had to make myself understand is that what I had wasn’t good and even though I was comfortable with the ‘normal’ pain, it was going to eventually do me some serious harm. But then I also knew there could be complications from the surgery that could be bad too. I felt like I was between a rock and hard place.

    But it is over now and my life is getting back on track. It is nice to be able to cough, sneeze, and laugh without my neck experiencing a spasm.

    So , all in all, things are good now.

    Hope all is well for other Chiari and odontoid patients. Tiff

    Reply

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