Chiari Online Support Group

Hey, new here feeling like

Hey everyone, my name is Sara and I am new to this forum and to this chiari.

Recently had an mri showing 4 mm herniation through the foreman magnum. I have had ongoing symptoms for about 1 year before mri. My pcp referred me to one of the best neurologists in the region, but I can’t help but feel a disconnect between myself and my pcp, she thinks I’m crazy possibly somatic symptoms! I know the pain I’m feeling is real. Please any advice would be appreciated!

Thanks for having me!

Hi Sara,
As Chiari is a condition many medical staff might deal with only once or never in their careers, it remains a condition many know nothing or very little of. The important thing for us as sufferers of Chiari is to find a doctor and neuro-surgeon who have knowledge and experience of the condition. Over the years I often had to ask a new doctor to my life to please update their knowledge about the condition, in order to answer my questions and to know what I am dealing with. Now I am blessed to be living in an area where my general practitionar, his partner as well as my neuro-surgeon have knowledge about the condition. Even medical staff with experience or knowledge will not always agree that your symptom is related to Chiari, even when it actually is. The best to do is to stay in this group, put your concerns and questions out there for group members who have experience of the same can share how they overcame or found alternative ways of management.

The pain is very real and the danger is that we tend to grab to pain killers to survive it. Longterm use of too many pain killers could cause kidney damage. It is therefore important to find alternate meds and procedures to block the pain. In my case I ad a decompression in 2011. I now take Remeron to control pain, as well as Lamicton. This works so well I can live with what I experience. Your Neuro has to look into your case and decide on the best way forward to manage your pain to limit the use of pain killers as such.

Be kind to yourself, rest often, do not exert yourself. Be aware of triggers causing your pain to start and avoid them. See your Neuro to start you on treatment and visit this group often to encourage you. You are not alone out there.


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Hi flerrie thank you so much for taking the time to respond and welcome me, my heart just did a little leap of faith, it feels good to know that there are others that care and know that this is no walk in the park.

Today I had a terrible pain day, was barely able to lift my head without excruciating pain in my neck! I recently got confirmation from the hospital my mri for the flow study has been booked for may 31 to check for flow issues, is it weird that I feel like I know what the answer to that will be? It honestly feels like the right side of my head inflames causing pressure all down the back of head and neck where I can barely lift it, also my right eyelid will puff out and droop during these times! Well all I can do is just try to relax and not have too much anxiety, because with the support of you, and many other sufferers I too can get through this!

Thanks again for your response, made my day!

Hi Sara, I hope you are feeling better. I responded to another question you had posted, but wanted to officially welcome you. I have found this website to so helpful and everyone has such good advice and support. I look forward to talking to you more. Tina from WI

Don’t let the term “somatic pain” throw you. Its NOT what you think it is. Since 2015 the coding and diefinitions have changed. What they have learned is that Chronic pain is an issue all of its own, Even of what caused the pain is removed/fixed the pain often continues anyway. When this happens we see a number of different thinks happen NS often wan to do more stuff or lay it to co-conditions. This seldom is the answer. Others blow you off. The good ones refer you to pain ,amagement specialists. These fall into two groups pill mills which ar found mostly in the NE or FLA and a smattering around the ret of the country or the real deal multipdisciplinary approach.

Chronic pain besides being “a pain” does something else along the way. It literally changes your immune sustem/pain centers. It, put simply. confuses the bejezus out oft them to the point they ar giving you BAD information. Traditional pain medication (usually) cause worse pain over time (hyper analgesia) Surgery etc has little/no effect. When a person has had pain for a while the first thing (IMO) i a persosn needs do is take every option they cah to get your body doing its job and being in charge again instead of surrendering tha job to the pain., The diagnostic code.may be "Idiopathic pain. Somatic pain or simlar. This does not mean the pain is not real or doesn’t need treatment, it only means that its more complicated. Don’t be scared by the term. Its means a specialist in this are will use every tool at hand to get the pain undercontol. Meds of course different kinds of meds to give the immune system a kick in the butt, surgeons, neurologists, Physical therapy to force your body to naturally produce endorphins which control pain, some medictation/self help strategies to allow your mind to tell the body what to do etc.

Lets be honest here. How many of us suffering chronic pain conditions wouldn’t paint ourselves purple, dance naked under a full moon while licking frog slim if there was evidence it helped (Be careful we had a member on another community who thought I was being serious. It turn out well especiually the catching of frogs for the slime living well or the dancing which he chose to do in a city park) These ar complicated contiditions. It would be GREAT if all we had to do was drill a hole in your head and sew in a piece of high tech tent fabric. It doesn’t work that way very often. We need to fight i much harder than that.

Correct most medical professionals only see a few SURGICAL cases of Chiari in their careers. The see many herniations. which sometimes clouds their judgement. By the same token the “Chiari specialists” have an equally bad perception as they see far too MANY cases as surgical (that are not) That why its important to try evererything first including trying to reform your pain management centers. Somatic Pain is not the same things as "malingering, hypochondria, etc where someone is mentally ill and attention seeking. It really is your body betraying you and making a bad situation worse.

Well said throughout your post and at the end with the pain that your brain is processing is really your body betraying you. There is much to read and much to do and many people to see to help you on your path if your pain has now taken an unexpected twist. It is always a question of who is up for the challenge - like Chiarians need a bigger challenge.

I do think that Chiarians as a whole need a different way of classifying their symptoms and determining what treatment is actually going to help.

I am now 6 years post-op. My neuro and I fought hard to prevent having to do the decompression, controlling pain by using Remmeron. Remmeron works on the balance of chemicals in the brain and helped me stop pain medications about 95%. However I found in 2011 I had such pressure inside my head, we could no longer postpone the operation. The operation went well, but I could not stop Remmeron. I still take it and is the best pain controler I could hope for. I do have days where I feel sore in the head/neck, but seldom use any pain medication.

I feel sad that so many chiarians suffer so much pain and doctors battle to know the answers to this problem. We all have to listen to our bodies and be led by it. I too can no longer work a full week. I work only two-and-a-half day per week.

I know when I do not sleep enough, or work with my neck bent forward too long, I will be feeling sore and sick the next day or two. Anything that affects the neck and neck muscles, such as carrying weight of 5kg and more, or doing exercise, run, work above my head etc, is a possible trigger and normally cause pain. Pay close attention to your body. Listen to it. Discuss medications with your neuro’s that you could take on a permanent basis to prevent pain, rather than waiting for the headache then trying to block it out with pain killers.

Go well.