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I need a diagnosis

Posted , 8 users are following.

kamlamb
kamlamb

Hello, I just joined this forum and after reading several threads I feel like I need to start my own. I am a 25 year old male and actually work at a fairly large trauma hospital in Texas. I have had headaches my whole life, some lasting up to a week or so but my mom always just said that “they run in the family and I’d grow out of them.” Well about 8 months ago I got a headache that has yet to go away. I get extremely dizzy and my headache gets very intense when I bend over, stand up out of bed,or get out of my car. My vision gets blurry as well but it only lasts for about 15 seconds and then subsides back to the regular dull headache. I can not pinpoint where my head hurts (my entire head hurts) and I can definitely feel my pulse when I lay down on my pillow. I get the chills and get nauseous randomly throughout the day.  Sneezing or yawning spikes the headache up pretty bad. I get confused and have an overwhelming feeling of anxiety sometimes. When this happens I start crying for no reason and have trouble answering the simplest of questions. I cannot lift anything heavy without getting dizzy and making the headache worse.

I have had a CT scan of my head as well as an MRI. The only thing the MRI showed was low lying cerebellar tonsils which were 3mm too low.

A neurosurgeon that I work with looked at the MRI and said that CSF flow looked normal and ruled out Chiari. I’ve had my optic nerves looked at as well and they were fine showing no signs of swelling or cranial hypertension. My blood pressure runs about 130/85 (don’t know why that matters but I’m giving you guys everything out of desperation). I’ve tried a variation of medication including blood pressure meds and anti seizure meds with no relief. My PCP is convinced it’s a Chiari but the Neurologist I’ve been referred to is booked out 7 months and I don’t even have an appointment a months after the federal. That being said, I’m going anywhere I can for answers.

I can’t complain too much after reading some of your stories, but my quality of life is definitely not what it was a year ago. I worry that it will only get worse and I have yet to find any answers! If anyone can tell me anything at all I would appreciate it. 

0 likes, 10 replies

10 Replies

  • Kerenza
    Kerenza kamlamb

    Posted

    Hiya, I'm so sorry you're having such a rough time. I don't really have much advice, but all I will say is that you need to see a Neurosurgeon that specialises in Chiari. Seeing a standard Neurosurgeon is not enough!

    From what you've written I take it you're in the US not the UK? I have friends over there with Chiari and this is what they usually suggest. Get a copy of your MRI scan, look up your nearest Chiari Specialist and pre-arrange to send a copy or email your scans across to them, and take it from there.

    So many people get misdiagnosed or sent away when actually they needed surgery, all because the Neurosurgeon/Neurologist had no idea what they were doing.

    Hope you get a break from your symptoms soon. Good luck x

    • kamlamb
      kamlamb Kerenza

      Posted

      Thank you very much! I will definitely try to get in touch with a Chiari specialist very soon. I guess I didn’t think that going elsewhere would make a difference but after reading other people’s stories I’ve realized it’s actually crucial to get a second opinion.
    • isabella77582
      isabella77582 kamlamb

      Posted

      Hi , when I was first diagnosed with Chiari , my family doctor asked that I be seen at the Montreal neurologist institute because he knew that I needed to see a specific kind of doctor and better yet at an institut, they are a team full or different Neurologist so if anything you can see whomever you may need . Well when they called me to make an appointment , the lady on the phone misjudged my situation and refered me to a general Neurologist . Once I got there and explained my situation , the Neurologist  got mad because my papers clearly stated that I needed to be seen at the institute and that he could obviously do nothing for me . He didn't understand why they sent me to him . I clearly needed to see a Surgean who specified in Chiari. Needless to say , he wrote me a letter to bring to the institute demanding I be seen on that day and that the situation be fixed . That disnt happend, but I called back and explained and finaly they booked me at the institute where I am now followed by a Neurologist and a Neurosurgeon. So if I can give you any advice ; you know your body and you know something is wrong , keep fighting to see someone. Perhaps there are other Neurosurgeons in your area that might be able to see you sooner or if you have a family doctor he could send in the request for you and get it faster ? I’m from Canada so im not sure how in works where you are . It may seem like a slow process at first but you’ll get there . 

  • melanie61979
    melanie61979 kamlamb

    Posted

    Have you checked out Spontaneous CSF leak? I also have chiari. My neurologist also says that's not causing my symptoms. I saw a neuro opthamologist and he thinks I do have a leak. I have had a lumbar puncture and my OP was 9. I would just do your research because your chiari can be cognitive ( born with it) or aquired ( meaning something has caused it) if it is aquired decrompression surgery will not help. The cause has to be found. I have seen so many do this and it was a mistake because they had a leak causing their chiari and if the docs would have just fixed the leak the chiari would resolve. Your brain floats in CSF if there's not enough it drops . Decompression surgery is major brain surgery and I would be sure before I went that route. This is difficult because most docs are not that knowledgeable on chiari or leaks. Especially leaks that are spontaneous. Good luck!

    • kamlamb
      kamlamb melanie61979

      Posted

      I suppose an MRI of my back would be the next step then? And if a CSF leak was found, that would still require surgery to fix correct? What you’re saying really does make sense to me and I am curious to see if that is my problem. I will be bringing this up to my doctor to see what he thinks. Thank you very much for your input!
  • Apple62
    Apple62 kamlamb

    Posted

    I’m in Austin , Tx.  Check out Dr Richard Stovall and Dr. James Walden in Austin.  I was decompressed in 2014 at Emory Hospital by Dr Daniel Barrow in Atlanta, Ga.  If you have blocked csf flow that is a problem.  Find a Neuro and get a cine mri. Wishing u the best.  

    • kamlamb
      kamlamb Apple62

      Posted

      I work for a pretty large hospital and that has its benefits, but unfortunately they have their own insurance and going other places is tough. In their eyes, we have a neurologist in our network so why do I need to go elsewhere? It’s ridiculous and very frustrating, especially when it’s been a month since my referral and haven’t been given an appointment yet. I’ll have to talk with my doctor and ask him if he’ll refer me out of network. At that pint it will just be a matter of fighting with insurance because there is no way I could pay for all that on my own. Thank you for the info.
    • wendy43600
      wendy43600 Apple62

      Posted

      What are Dr Stoval and Dr Walden specialties? I just got an MRI to rule out MS and Chiara after a diagnosis of EDS in Dallas (Thankfully POTS was ruled out) but MCAD is a concern along with a few other issues.

      I am hoping for someone in the Austin area to help read it as I can't keep taking off work at the moment. This is all new to me... Thanks in advance.

    • Apple62
      Apple62 wendy43600

      Posted

      Walden and Stovall are neurosurgeons.  You could call and ask them.  Sorry, im not much help.
  • kimberlee_90115
    kimberlee_90115 kamlamb

    Posted

    Hi, 

    I’m so sorry you’re having such an awful time. I struggled for years to get a diagnosis. I have chiari with an 8mm tonsil, however, it doesn’t matter if your tonsil is 0mm or 20mm everyone is different, and everyones symptoms are different, but everyone struggles with the symptoms of chiari.  It is awful & dibilitating, and it’s so very important to find a chiari specialist. Neurologists and neurosurgeons aren’t all familiar with chiari and it’s symptoms, or it’s related conditions. So it’s inportsnt to do your own research. There is a great Facebook group called “The Chiari Life” it’s based in the USA and it has loads of information and research available, you just have to message the admin team and they will let you join. It’s extremely supportive & informative & they also have a list of chiari specialists. 

    When you join the Facebook group, you will see that you are not alone!! We are all in the same boat & we are all here to help each other. The feelings of anxiety and pain are all normal. The head pain is called “valsalva” headaches and they worsen on straining, so sneezing, coughing, bending down etc etc.  Unfortunately you have to put your foot down with the doctors and don’t be put off, you know your body better than anyone, trust yourself!! All the symptoms you are feeling are normal for chiari malformation. 

    Have a look at the related conditions  too:-

    “Syringomyelia”

    “Sleep apnoea”

    “Ehlers-Danlos Syndrome”

    I have all of the above, but was only diagnosed after I requested to be tested, thanks to the amazing Facebook group “The Chiari Life”  and all their information. You can ask anything you want to, and loads of people, all dealing with the same conditions as you, will answer you & it’s so helpful and reassuring. 

    I’m sorry to ramble on, I just feel for you as I struggled for so long also just to get diagnosed. 

    Take care & good luck. 

    Ps. I am in the UK. My amazing neurosurgeon is at Manchester’s Salford Royal Hospital. 

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