1. Community
  2. Brain and nerves
  3. Chiari Malformation

Just found this site.. Looking for answers re: Chiari Malformation.

Posted , 7 users are following.

susanrad
susanrad

My story is 3.5 years long, but I'll give the nutshell version. I'm a female, 53 on 10/31. My whole life up until then, I was very active, softball, kayaking, hiking.. I was a Registered Dental Assistant for 25 years. April of 2012, I began to wake up nauseated and when I pushed myself to get to work, I was so sick. By 7/2012, I couldn't work. I was just too sick.

As of today, I have had many blood work ups, upper and lower GI tests, CT Scans, head, chest & abdomen. I have Kaiser. I have felt like my very young Dr. Is more bothered by me than wanting to help me. Every time I had test done, I had to ask for them. He made it sound like, ok, but I don't think it's necessary. I asked to see a Rheumatologist, she tested for Lupus, but said it came back negative and said I had Fibromyalgia and sent me back to my GP.

But the underlying bother I am having is. In the brain CT Scan, it reviled that I had a small Chiari Malformation, but again my doctor and the doc that read it said that it shouldn't be the cause of my illness. Does anyone with knowledge of this CM enough to know that if a CT Scan shows anything, is it possible for it to effect me like this. I am fighting to get my SSDI, I have been denied and have had no income for 3.5 years. It's been rough to say the least. It's been financially difficult for my husband. I don't know what I would have done if I were single?

Anyways, all input would be appreciated. Thank you!

0 likes, 14 replies

14 Replies

  • yeltzer
    yeltzer susanrad

    Posted

    MRI scan will give you a better picture than a CT scan.What size was the malformation? The symptoms for a CM vary between patients. you can have a"long" CM with few if any symptoms but you can have a short one with many symptoms. As been stated on this site many many times a lot of doctors seem ignorant of the condition, can you get a refferal to a NEUROSURGEON ? Good luck.
    • susanrad
      susanrad yeltzer

      Posted

      Thank you so much for the reply. I may ask for a MRI and see what that shows. If Kaiser still poopoo's it, I will have to go to a specialist.

      They say it's small and should be a problem, but diagnosed with fibromyalgia. I don't want my condition to be put in a box if it is this, so thank you again.

  • b2wc97455
    b2wc97455 susanrad

    Posted

    I am sorry to hear it, I have the similar condition as you are at first for 12 years they thought that I suffere from Fibromylagia, lupus or lyme disease until I have black out last year RESIGNED FROM WORK because they found out tht I have got CM1, I was glad I have joinied this group and yeltzer informed me about the neuro surgeon called Mr Flint, when my local neuro surgeon met me, I asked him, luckily he referred me to see him, but he had so much long list and he is on holiday up to end of this Nov - I have to wait... in the meantime..a friend of mine advice me..while all the drugs that I am taking does not do the job, I go for acupunture, each night before going to bed I have warm shwoer, especially on my neck (2-3 minutes) then massage the whole body in particular in under arm, trapezium, neck spine with organic oil and magnesium oil - drink 2 glass of warm water mixed with fresh ginger and lime in the morning, each night I mix milk with tumeric and honey, I stopped eating any food with content gluten and also process meat. I hope you feel better
    • susanrad
      susanrad b2wc97455

      Posted

      Thank you for your reply. This group had been very helpful to me in a very short period of time. Thank you for your input and some of the things you do.

      I hope you get the treatment you need to feel better soon. Good luck to you as well. Yeltzer is helpful smile

  • nihilo
    nihilo susanrad

    Posted

    Hi susanrad

    Just to second the other comments, you must see a neurosurgeon after having an MRI scan.

    After the CM was found, were they able to also rule out the presence of a syrinx (I only ask because any neurosurgeon will want to know if the CM has effected the flow of fluid in the spine).

    I have a small CM and had surgery 2 years ago due to a syrinx it had caused. My surgeon told me that even he believed that size related to symptoms until seeing me as I had the largest syrinx he had ever seen and the mildest symptoms of any patient he has ever met with this condition. Even my neurologist admits knowing very little about the condition and so checks everything with the neurosurgeon (even now after surgery is over). Don't settle for seeing a neurologist, you must see a neurosurgeon with knowledge of this condition. I know it seems extreme, but hopefully your doctors are correct about the CM not being a big problem, however, only the NS with knowledge of CM can say for certain.

    Before surgery for around 2/3 years I was very nauseous and needing to be sick alot. Even now I am told that it was not due to the CM but I believe it was. CM surgery makes you VERY sick due to the part of the brain they agrevate during surgery. 2 years on I am still sick often as I developed a cyst on the same area. So basically, I am told my current sickness is due to the CM which is exaggerated by the cyst, but that the exact same symptom before surgery was unrelated and some unknown, separate condition. I am telling you this because I know the feeling of a doctor telling you something about your body and seriously disagreeing with their answers.

    I don't want to panic you or convince you you have something you may not, it's just that if you are persuing the possibility of this condition causing your symptoms I want you to be armed with any info you may need to get the right treatment from the right specialists. You could even email some of the neurosurgeons near you and ask if they would be willing to look at your scan (must be an MRI scan of head, ideally spine too and should also show the flow of CSF in these areas).

    As you make progress, keep us updated on this site as we will all try to advise you as you go along about how to get the most out of any appointments you get. Alot of us have done it the hard way, and would love to help someone in a similar position figure out the short cuts.

    Best of luck and have a happy birthday!!

    • susanrad
      susanrad nihilo

      Posted

      I am typing this through wet eyes. I can't tell you how touching and refreshing it is to receive such care and knowledge from a complete stranger. What a beautiful world this would be with more people like you. Thank you so much and bless your heart.

      Since I have Kaiser, should I utilize their MRI and request what I want as far as brain and spine to show flow. Then have someone look at that for 2nd opinion if Kaiser still doesn't detect anything?

      I have a call in to a Dr. Meek irk in Marin area. He was referred to me by my advocate that is helping me with getting SSDI under the Fibromyalgia Dx. I just don't want to let this small finding go if it's causing my chronic nausea. The other weird thing that I didn't mention; my mom and her mom had hydrocephalus. I don't know about her mom, but my mom had this detected in her 50's when she thought she was having a stroke. She had a shunt put it and is fine. But Kaiser said that hereditary types are known from birth. That it must have been a coincidence and environmental.

      I have met my deductible for this year, but after January, I'd like to get out of Kaiser. I have not " Thrived". They make me feel like a hypochondriac. That couldn't be farther from the truth. I just know that, 3.5 years ago, my life totally changed.

      Thank you nihilo. Have an awesome day 🙋🏼

    • susanrad
      susanrad

      Posted

      I don't know what happened, but that was Dr. Newkirk in Marin. He may be a Neurosurgeon? I will check. TY again
    • nihilo
      nihilo susanrad

      Posted

      Hi I am so happy to hear that my message had an impact on you, it helps me just as much to think that I am capable of offering support to someone when we all feel we are struggling to help ourselves, it boosts my strength and motivation so thank you too!

      I am sorry to say that as I live in England I can't advise you on financial issues, but there are many users of this site that have experience with this as well as indentifying doctors in their area. I am aware however, that companies like "Kaiser" are profit orientated and as a result, seek to deny health care where possible in order to maximise their profits. If you request health care, it is basically their job to come up with a reason why they shouldn't have to pay out. My heart goes out to you and everyone else facing this additional barrier to getting the right treatment.

      In my last message I mentioned that a spinal syrinx is a common complication of CM due to fluid being obstucted in the spinal cord. This happens because the bit of brain that has herniated blocks the passage of fluid that normally flows around the brain and spine. When the obstruction causes a build up of fluid on the other side (as in the brain side not the spine side) then this is called HYDROCEPHALUS.

      I have learnt from experience that CM is a condition where the patient really needs to take control and not be deterred when offered what you feel to be wrong information. If I were you I would write to every relevant person you can stressing that it is only a neurosurgeon with experience of CM that has the knowledge to comment on your condition. Even if there is no treatment to be done, IT IS ONLY THE NEUROSURGEON WHO CAN DECIDE THIS, even neurologists won't pretend to know more about it than they do!

      As I say, there are others on this site with better info on how to deal with SSDI etc. For now maybe have a look at some pages set up to help.

      http://weillcornellbrainandspine.org/condition/chiari-malformation/doctors-who-treat-chiari-malformations

      This site gives you the option to contact a surgeon directly and request an appointment. It is so, so important to see specialists, everyone I speak to with CM tells the same story of being told "you're fine" by doctors which makes it even harder to cope. The web site above says that even if the CM is discovered by accident, the patient must see a neurosurgeon. No one should be stopping you from seeing the right specialist.

      The surgeon will need to see an MRI of the head and cervical spine. If possible a CINE MRI should be done which shows the flow of spinal fluid around the foramen magnum, which is the bit where the CM pokes out!

      I will help however I can to make sure you get what you need, if the web sites about Chiari don't help you get any further, just ask and we will find another patient on this site who has been in your situation and found a way to cut through all the red tape! Try not to loose motivation, there is an endless source of help and support available through sites like this one, so it is never the end of the line. We all have different knowledge and abilities so between us can offer help with almost any aspect of CM.

       

      Don't forget how much you have already accomplished, 3.5 years is no joke, be proud of your strength!

    • susanrad
      susanrad nihilo

      Posted

      Thank you so much. I appreciate your message. I haven't been on here for awhile.

      You are very generous with your information and kindness.

      Good night.

      Susan

  • anils2003uk
    anils2003uk susanrad

    Posted

    hi susan , i am a neurosurgeon pateint , i had so many ops on my brain , inc pulse cut out , neck glued , radiotherapy etc , yet i am still here and only 42 , or 43 next week , happy birthday by the way , i was only 25 when i had a brain heammorrage which led to all sorts of complications , yet the government say i am able to work , with one hand only working i find things very hard , my wife i dont know how she puts up with everyday tasks , i live by the sec and not minute , but keep a smile on my face , good luck in your neurosurgery and god bless... anil.
  • Megsrayne12212
    Megsrayne12212 susanrad

    Posted

    Hi Susan, my malformation was found after my stroke at the age of 27. I got the same reaction and still do from the doctors, I swear if Dr. House was real doctor at least up here in Maine, a lot less people would be in pain. But back in track, my neurosurgeon told me this and I truly believe it. "If you have a chiari malformation, pain is there and and its your life, the size of the malformation is for office use only" I always remembered that because its so true. I hope you get to the bottom of this soon. Once you get your SSDI figured out I would definitely do the MRI and the Neurosurgeon. This is my first day on this site and its already amazing! Best of luck to you!ღ
    • susanrad
      susanrad Megsrayne12212

      Posted

      Thank you so much for your message. I appreciate it very much and I'm glad you found this site too smile

      Susan

    • rachelceleste
      rachelceleste Megsrayne12212

      Posted

      Hi!

      Who is your neurosurgeon/neurologist?  I just went to a neurosurgeon in NY and he told me that my symptoms of pins and needles, joint pain, enduring headaches, trouble breathing and swallowing at times, loss of coordination and balance, random feelings of heat/cold, and in the same respect loss of feeling in my face and legs is not caused by my Chiari.  I am just so desperate for help or someone to diagnose the reason behind my symptoms Bc pain management has not been helping and I am unable to function daily.  I am getting two more opinions from different neurosurgeons but I feel so defeated.  They make me feel like I am making this all up in my head, but like many people with Chiari, my life changed so dramatically all of a sudden and I know that what I am feeling is not normal.  I can barely walk or get out of bed some days Bc of weird and painful sensations throughout my body.  Thank you in advance!  

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.