Does this sound/look like Chiari?

Hi Melanie, have you made any progress on your condition? I've had improvements since the blood patch, and I'm able to go back to working in the office and stay upright for most of the day. If I get any discomfort now, it's usually mid-afternoon. Drinking a decent amount of coffee does help with the head pressure (it's more mild than before). I am waiting for a call back from Duke because I don't think it's completely healed, but I also may need some more time. I'm going to see what they say and go from there. 

I am so glad to hear that you have improved. That just confirmed that the leaking is what's wrong. Did they ever locate your leak or go blind? Duke will be able to locate it if it hasn't been located already. Well since we spoke last just like I thought my neurologist would not even entertain the idea of a CSF leak. I am going tommarrow to a new neurologist and see what he makes of all this mess. Did I tell you that my old neurologist put me on diamox for highpressure? It made me so much worse and the neurologist opthamologist said he thinks I have a leak and the diamox is lowering it even further. I still have all my same symptoms. Still not working. My doc just didn't get it! Hopefully this new one is my ticket . Update on duke when you get to go!

I've only had one blood patch attempt and they went blind. Your experience is not surprising; trying to find a neurologist who will take you seriously is incredibly difficult and frustrating. So many of them won't even entertain the idea of a leak unless you had a lumbar puncture or trauma, which according to experts is completely false. Honestly, if this new neurologist you're seeing doesn't want to do anything about your symptoms, call Duke and go from there. 

Let us know how your appointment goes. Good luck!

Well here's my update from new neurologist: he will not entertain the idea of a CSF leak. He thinks I have the exact opposite. He thinks I have inercranial pressure and wants to start me on lasix to reduce fluid. He is also sending me to a neuro surgeon to look at my chiari malformation and has ordered me a MRI of spine. I guess he is doing more than my old doc. Still I'm a little nervous starting a med to reduce pressure. My LP pressure was so low how could it be inercranial pressure? I am so over it today. Fighting for answers is almost as bad as the illness I swear!! All I can do is move forward. A call to duke may be in my near future. I am glad to hear you are on the right path. Back to work sounds like a dream to me ( never thought I would say that) . I pray for you to continue to get better. I'll update with anything new .

That is odd. Did he give an explanation as to why he thinks you have intracranial hypertension with an opening pressure that low? You'd think the combination of the low opening pressure and chiari malformation would scream "LOW PRESSURE", but I'm not a doctor At least it seems like he's more interested in your case then your previous neurologist. Was an MRI of your entire spine ordered?

And I don't think it would hurt to reach out to Duke at this stage. You've been through a lot already!

Yes I am very skeptical of that diagnoses.  He is going off my symptoms which low and high pressure symptoms are a lot alike. He is sending me to a neuro surgeon and I am also going to bring the leaking up to him. All the docs I have seen just do not understand spontaneous leaking. At this point I am skeptical about even taking the med he prescribed for high pressure in fear of making myself worse. The only thing that points to high pressure is I have elevated optic nerves. But everything else screams leak!!! chiari , opening pressure of 9. Mabe the neuro surgeon could help me? They have ordered a cervical only MRI . 

Yes, so many doctors are absolutely clueless about this condition! I have more to add: I saw a great rheumatologist today (I had this appointment scheduled for over 3 months, when I had no idea what was going on) and told her my whole story. Her - as a rheumatologist - said "I really think you have a spinal fluid leak. One of my colleagues had nearly all of your symptoms and was eventually diagnosed with a leak." She was baffled that all but one of the neurologists I saw didn't connect the dots. When I told her that several suggested I see a psychiatrist she went, "Oh, please! That's ridiculous." 

I really hope your scan and neurosurgeon appointment put you on the path to relief. 

Wow your rheumatologist even said you had a leak? You are very blessed to have people backing you up. Your leak really affected your muscles and joints didn't it? I am the same . I once was a very strong person now I feel so weak and tremble on the inside. I'm ready to try a patch . I feel like this is just wearing my body out. Even if I push through the dizzies and head pain / pulling I can only be up doing stuff for max 2 hours and I am exhausted. I used to walk at least 3 miles a day ( treadmill) and work a job on my feet for 8 hours after that. I am glad you have found some support. No one should have to go through all of this. You take care and update.

Yes, I was surprised she knew so much about them as well. And yes, it really affected my entire body, but the muscular-type symptoms didn't start until maybe a month and a half into all of this. I'd try a patch if you find a doctor that will order one. They're very low-risk procedures, just unpleasant. 

I did get a call back from Duke this afternoon and spoke to the scheduling coordinator. I'll be sending my images and paperwork down to them before the holiday. 

Hey! So whatever new with you ? Did you ever get into Duke or have you recovered? 

Sorry for the late reply. A lot happened over the past month. I did end up talking to Duke and - based on the review of my images, records, and symptoms - Dr. Kranz actually thought a CSF leak was unlikely. This was because I let him know that a cervical collar significantly reduced a lot of my symptoms while wearing it. Obviously, if I had a leak, a collar wouldn't have had any positive effect on my symptoms. I did end up seeing a renowned neurosurgeon who specializes in hard-to-diagnose cervical spine issues, and he was pretty certain I had instability at C1 - C2 based on my neurological exam and symptoms (he also suspects an underlying connective tissue disorder, for which I've had whole exome sequencing performed and am waiting for the results). I had dynamic imaging performed (upright flexion/extension MRI and rotational CT scan) of my cervical spine last Friday. My follow-up is scheduled for February 1st to go over the results.

Have you made any progress with your doctors in getting a proper diagnosis and treatment?

Hey I am so glad to hear from you! So dr Krantz says no leak? Cervical instability does sound very possible given the symptoms. How is your vision? Still blurred? Sounds to me you are getting very good treatment and testing that should soon show some results. I on the other hand not so lucky. I am not very computer savvy and have no idea how to send everything to Duke .  I have been officially diagnosed with Chiari Malformation however my doc dosent know if this is the reason for my misery list of symptoms. He has referred me to a neuro surgeon for consulting. I am anxious about the appointment but I hope he dosent focus entirely on the chiari and wants additional testing because I believe something else is going on. Only tests I’ve had to date are a lumbar puncture brain and cervical MRI. Not sure why no other testing has been done . I do have private insurance so that’s not an issue. My neurologist put me on a migraine med until I see the neuro surgeon. Good grief! Migraine? Really ? I am not one to be pushy but I am going to ask for a referral to Mayo Clinic . So that I can hopefully leave with some answers. I still believe I am leaking but no one else does. Good luck with your results and update . Do you still suffer the same symptoms?

Hi Melanie, I replied to Sabrina on here with my latest update. It’s good news for once!