New here! I have Chiari 1 & have questions, help?wn

Welcome Greetings and Introductions
1

Hi everyone. I think I may have been a member here in the past or maybe another site (my memory is awful) but I wanted to tell a bit of my story and see if anyone can help me out with advice.

I have had symptoms since 2005 and was diagnosed in 2009 (after being treated for MS for a year… Which I don’t have oops) I had medical insurance and was seeing an amazing NS and he had decided to do surgery. When I told my employer about it and the date that was set he said oh wonderful you’ll be getting better how long do you need off, then his mouth dropped and he was never nice again. Managed to fire me within a week of surgery, ending my insurance, making the surgery unavailable.
Anyhow, until last year I managed my symptoms semi-well, still no insurance (I screwed up the obamacare stuff/deadline because well, I forgot :confused: )
Gradually things have got worse and unbearable where I have no life, friends, barely have a job so as the name hints it’s just me and the cats suffering at home.
Two months ago I started going to a clinic with PCP and pain management docs that actually takes self pay and isn’t rediculous expensive. Anyhow, they know nothing of chiari it seems and throw meds (some actually help some don’t) at me. I did see an intern yesterday who knew about chiari but couldn’t do anything but refills.

I can’t take it anymore, I want to know if there are any meds that can make life easier until next year I have obamacare insurance and can get my surgery? Is there anything else I can do to help? Am I going about it right trying to treat the symptoms now, then line up a NS to see when I save up the money so that I can have everything ready when I can finally have the surgery? I just don’t know what to do and I’m desperate.

I also secondarily have multiple degenerative discs, mild scoliosis, spinal bone spurs, kinked medulla and the chiari has varied from 4mm-9mm throughout 8 MRIs

My symptoms:
Constant head/neck pain
Severe headaches
Pain, dizziness, blackouts when I stand up, bend over, move my head wrong, cough, yell, use the restroom, lifting, etc
Balance/coordination issues
Ringing ears
No gag relex/choke on food/drink/my own spit
Numbness/tingling randomly on my head, face, neck, hands

It’s goes on but I take
Neurontin (which I think helps a bit)
Hydrocodone (I’ve taken off and on and It doesn’t seem to work like it used to, sometimes not at all)
Zanaflex (occasionally helps)
Meloxicam (no clue if it helps)
Meds make me have a little bit more “better time” I think.

Thanks for reading! If you want to ask any questions please do, I appreciate any help or advice you can give me :slight_smile:

2

Thanks Abby! I have not been, don’t even have a clue what it is! Thank you. You know I think knowing I’m not alone and just communicating with anyone… Especially people that understand will help me. I currently go days with out any contact with anyone else at all. And hoping to find out if/what meds are my choices for now. I’m sorry you deal with it as well, I at least somewhat understand. I know it sucks!

Nykki
Here in Texas you must have a child to get medicaid or that’s always what I’ve been told when I want to apply :confused: thank you though.

Also, I’ve had issues responding to post on here, hoping this one works, sometimes what I type disappears when I click reply and I just end up with a blank box and the choice to start over or give up.

3

I had the same thought as Nikki about applying for medicaid to access healthcare. You might also be able to qualify for disability if your are unable to hold a job at present due to the medical condition and you would apply for that through social security and the DRS office. You can qualify for healthcare if disabled. I don't know where you live in DFW but the northeast DRS office is on Grapevine Hwy. You could also access healthcare through John Peter Smith in Ft. Worth if you live in Tarrant County and do not have insurance and the means to self pay. However…all that said…who knows if any of the doctors in those systems would know anything about Chiari.

My PCP is MidCities Family Care on Hwy 121 and I do know my doctor has 4 other Chiari patients because I did ask specifically when I was diagnosed. So if you are looking for a general PCP who at least has some knowledge of Chiari...

At present I am using the following drugs for symptom management: gabapentin (I have nerve pain around my mid section and this does help with this..it is like neurotin) , topiramate (still not sure if this is helping the headaches or not), amitriptyline (at night,..really helps my sleep, quality and quantity), tramadol (headache pain..) I also often take an advil and tylenol together which really helps the more minor head pain, etc. although the docs keep warning about not taking tylenol on regular basis due to liver damage. For some reason taking the two together gives results that neither pain reliever alone gives…my PCP is the one who gave me that tip.

I am glad you have your cats to "keep you company". I am not a "cat person" but I do have a furry sidekick so I do understand…I have an a older 60 pound Australian shepherd/ border collie mix who is my buddy.

I hope your "quest" for good knowledgeable healthcare improves…and until then and after you do have all your online support here. Hoping today is one of those "better times" for both of us...

Scout

4

Cat lady, many of us have malabsorption issues with digestion- we are low in Vitamin d, B12, and magnesium. I, along with several others, have found that supplementing with higher doses of D3 and chelated magnesium have a direct affect on pain levels. Arnical gel or cream is topical but it makes a difference for me too, I put it all over my neck and base if skull.

I too thought EDS right away when reading your post. DDD, scoli, and the kinked medulla (possible craniocervical instability) are very EDS. When you are to start looking for an NS please find one that specializes in Chiari patients with EDS, these surgeries require more.

I’m sorry you are going through this and I hope it helps that you are not alone.

Jenn

5

Another thought… I have EDS and started wearing a cervical collar about a year ago. If you do have instability in your neck or cranio cervical joints the collar adds stability and cut WAY down on the pain. You can start off with a soft collar from a drug store. If you do decide to try it wearing it at night is most important because you aren’t able to conscientiously keep your head from bending forward or back.

6

thank you everyone very much for all the info!
Scout: disability is probably my only option. I have barely began researching it and think I have to have a knowledgable enough doc to be on my side to prove I qualify. I have been though the JPS routine with little to no luck. I would like to look into your PCP as that isn’t terribly far from me! Thanks for the med info, I can’t take Tylenol anymore because I have taken too much in my life. It is in the hydrocodone I take (have taken off and on for 10 years) not only is my liver at stake but I am tolerant to Tylenol and now pretty much hydrocodone (Vicodin/lortab) tolerant although the doc says there’s no other med to try and keep taking it. I usually don’t unless I’m desperate because it usually does nothing. I’m glad you have a buddy! I think they can help people more than anything sometimes :slight_smile: I hope the best for you too! Today is not a “good day” for me but I’m hoping.

Jcdemar: thank you. I take some vitamins but I will look into how much I’m getting. I’ve never been tested for deficiency. I used to use some sort of gel, I think voltren, for my elbow before and after surgery. I would put it on my head and neck and randomly i thought it helped. I will ask about this to try tho. I’ll try anything at this point. I have looked up a bit about EDS and it made my jaw drop! I had recently been researching another disease dealing with hypermobility and pain. After my elbow surgery (work comp) i was upset because they were like you lost little range of motion but to me I had lost almost all. My arms and other areas have always extended more than normal. My settlement with this surgery was tiny because my loss of motion was tiny but they didn’t take into account how much it was before. Anyhow, I do have joint pain (been diagnosed with FM) soft skin, I always think my skin stretches too much. Is a NS the doctor that would diagnose this or my PCP? I definitely want to know if I do or don’t if it affects surgery. Thank you :slight_smile: it’s nice to have you all. I will look into the collar. I was in one a while at the hospital after my car accident last week (which I think my previous symptoms have been exaggerated since it ) I should have stole it instead of letting them trash it lol. But sleep or trying to sleep is a huge issue for me. It sounds like it might be worth it.

7

Thanks nykki!
Can I ask this… It’s a subject I usually try and avoid…
I do work (very limited) at my best friends business. He understands I can’t come in every day and have to leave. But it is all cash, nothing documented. This is why I don’t qualify for local assistance (JPS, the county hospital) because I can’t prove I have any income and they don’t help people who can’t prove anything because they say you could just be using the system and totally able to pay for services so they want to know you’re “low income” do you know it that affects Medicaid ? I have been denied multiple times and been told more than once by a social worker if I wasn’t pregnant or with a child under 18 I would never get Medicaid. I assume I’ve been given bad info and will use your link and apply right away now. Thank you!

8

Cat Lady, I have also used topical gels with arnica that have provided some pain relief but didn't think to mention them earlier. The gels I have used in the past are: Zim's Max-Freeze (joint pain relief) and Bio-Freeze You used to have to get them in a clinical setting but I have now bought them at CVS in the last few years.

jcdemar said:

Cat lady, many of us have malabsorption issues with digestion- we are low in Vitamin d, B12, and magnesium. I, along with several others, have found that supplementing with higher doses of D3 and chelated magnesium have a direct affect on pain levels. Arnical gel or cream is topical but it makes a difference for me too, I put it all over my neck and base if skull.

I too thought EDS right away when reading your post. DDD, scoli, and the kinked medulla (possible craniocervical instability) are very EDS. When you are to start looking for an NS please find one that specializes in Chiari patients with EDS, these surgeries require more.

I'm sorry you are going through this and I hope it helps that you are not alone.

Jenn
9

As I read more about EDS I’m pretty sure I have it. I realized it’s related to POTS which I was told I have years ago, forgot about that! What kind of doc diagnoses EDS? (Can’t find it googling) thanks.

10

Hi there! I take indomethacin for my headaches. This particular drug works well on "exertion-type" headaches....that pain you get when you bend forward, cough, sneeze, stand up too quickly. It has worked well for me. Good luck to you!