Chiari Online Support Group

Guidance/NS referral in NJ


#1

Hello all! I’m new to the forum and newly diagnosed. (I use the term diagnosed loosely bc the neurologist I was seeing feels the CM is incidental and congenital and should not be causing any of my symptoms.)
I’ll try to keep this relatively short and sweet.
I was in a mva in November 2016. Since the accident I’ve been dealing with daily headaches as well as facial numbness. I’ve also been dealing with tingling in both my arms and legs. A week after the accident I noticed I was unable to lift my right leg to step over one of my son’s toys. I have some days where I am okay and my walking is just a minimal limp and others where I’m actually dragging my leg behind me and using a cane. Most recently, I spent a day out with my family and had to walk with my cane for support throughout the entire day. That evening I had burning pain throughout my entire right arm radiating from my fingertips all the way up to my shoulder. The burning sensation I can only describe comparative to surgery. It’s almost like the incision site after your anesthesia wears off very very deep burning pain.
I have been bounced from Orthopedics to neurology and no one seems to think that my Chiari malformation is a valid diagnosis for my issues. After doing a lot of research on my own it’s the only thing I can really justify as causing my symptoms. Thankfully my primary care physician feels the same way. I just wish the Specialists did.
If anyone is still with me on this post, LOL, I’m really looking for a referral to a neurosurgeon in northern New Jersey or somewhere nearby, who takes Motor Vehicle Insurance. Because I know Chiari is something that you have from birth, I’m having a hard time finding a doctor who will relate the malformation to the car accident, either saying it was exacerbated by it or made worse by it.
Any help would be greatly appreciated!


#2

Hi! I live in lower northern jersey. Have you had an MRI done before the accident? It’s very possible that you’ve had chiari malformation your whole life, living symptom free, but the accident caused some head trauma that triggered your chiari symptoms. I find it very hard to find a neurologist that knows anything about chiari. I had Dr Wells-Roth in Morristown do my brain surgery. He’s an outstanding doctor and is very focused on the person and how they are living with their diagnosis. From that he tries to figure out that best possible approach for each patient. I unfortunately have to see him again next month for a possible reaccurance. Hope this helps!!


#3

Hi Aimee!
I did…approx 10+ years ago. I remember the Dr telling me I had “mild cerebellar tonsillar ectopia” but that it didn’t qualify as a Chiari Malformation.

My first neuro consult after the accident, I was completely blown off bc the Dr didn’t want to treat me under motor vehicle insurance. “Yes, there is something going on, but I’m not touching this”. Ugh

The second neuro consult I had, the Dr completely blew off Chiari as an incidental finding and was adamant that it wasn’t causing any of my symptoms.

I saw my PCP just yesterday and she is fairly convinced that Chiari is exactly what is causing my symptoms. She is running some labs to make sure it’s not in fact something auto-immune.

Sorry for my rant. It’s not often I catch the ear of someone who understands what I’m going through!

I’ll definitely check out the Dr you suggested! Thank you SO much!!

Good luck at your follow up!!!

Kristen


#4

Hey Kristen,

You’re definitely in good hands with this group. Everyone’s story is kind of similar. Sometimes I feel like it’s a little inactive but I definitely try to come and respond to as much as I can. It’s definitely frustrating. Doctors usually never listen but I think you’re lucky to have found a PCP that listens and agrees with you. The problem I find is that everyone has different symptoms so it’s hard to say definitely it is or is not chiari. My neurologist that found my chiari knew enough about it to send me to a neurosurgeon right away. I didn’t even get a chance to see him again, he called me at 7 pm on April 1st to tell me to cancel my appointment with him and to call dr wells Roth for an appointment. I was traumatized to say th least. But I saw dozens of doctors before finally seeing a neurologist because my pediatrician told me my headaches were normal, slapped me on the back of the head and said take Tylenol. I don’t see my first neurologist anymore but he knows a little bit about it if you want his name and number. I’m not sure exactly where you live, but it’s worth a shot if the other neurologists aren’t working with you. I was 19 when I found out and honestly probably too immature to have had to deal with what I went through. And at the time, I didn’t find this group helpful. Definitely reach out to me any time you need anything or have questions. I have friends and family and a boyfriend, but its not the same as having someone who can actually relate to you.
Best of luck with everything if I don’t hear from you!
Aimee


#5

Thanks again for your response.

I’m working with an attorney to try to find a neurologist to help out. I’m hoping now that we have an idea of what direction we’re heading in, I’ll be able to find someone who is more knowledgeable in Chiari. ::fingers crossed::

I’ve read that there is a Chiari Institute on Long Island. Have you heard anything positive/negative about them? It doesn’t look like it would be a far ride.

I’m in Passaic County - Hawthorne. I’ve seen Drs here as well as in Monmouth county where I grew up. As I said, it’s only since the accident that my weakness and major symptoms have started. I’ve only really dealt with headaches and fatigue in the past which was chalked up as migraines and fatigue from being a diabetic. I’ve also been told, before being diagnosed as a diabetic, that i had EBV and Chronic Fatigue…and that I was depressed. SMDH

Anyhow…Again, thank you for getting back to me. Sometimes its just nice to know people understand where you’re coming from. My family has been very supportive this whole time, but it’s something that’s impossible to really explain unless someone is dealing with it.


#6

Oh wow, an attorney is helping you? That’s great though. I did some research to find another surgeon that specializes in chiari malformation but most of the doctors that specialize in this only dealt with pediatric patients. They wouldn’t even let me see the doctor and recommend me to someone who can help me out. The one I found needed all of my medical records to go over before even considering making me an appointment to see him especially since I already had the decompression surgery. It’s definitely difficult especially since no one can ever agree on what are symptoms of chiari. I live in Essex county and my insurance doesn’t pay for anything out of state. I’ve heard of a chiari institute. Not sure if it was in Long Island or if it was in upstate New York. I tried reaching out to them but I never got a call back or a reply to my email. The research I did on the place said they do a lot of testing there before discussing treatment plans because they want to get the best view of the persons condition and how to approach it. If your insurance covers it, maybe reach out to them. I could imagine it’s one of the better places to get treated.
Good luck with everything and keep in touch!!
Aimee


#7

I too was born with Chiari and a motor vehicle accident did indeed set off horrible symptoms. Unfortunately, the Drs. did not do decompression surgery until over 20 years later and as a result, many of my symptoms are permanent.

Insist on getting the Chiari issue looked into as accidents do indeed make symptoms worse or set them off.


#8

I am so so sorry to hear that you went through that. It seems it’s going to be a challenge to get this taken care of. It wasn’t until after the car accident that I started to be unable to use my right leg and started getting chronic daily headaches with facial tingling. My hip flexor doesn’t seem to want to work at all. ( Some days worse than others) I’m so afraid of my symptoms becoming permanent. I will most definitely be pushing for treatment sooner than later. Thank you so much and I wish you the best!


#9

Sorry to hear of the ongoing issues. It certainly sounds like you are going down the correct pathway and need to get into a neurosurgeon who is comfortable with Chiari issues.

I would make a few recommendations(from a treating MD standpoint).

As Ret.Chiari states, delay in treatment can lead to permanent issues. In 2015, the Chiari Severity Index was published https://www.ncbi.nlm.nih.gov/pubmed/25584956 . This is applicable in your case because surgical success drops from >80% for patients with sub-occipital head-aches, to <60% for patients with myelopathy(evidence of spinal cord dysfunction, e.g. dragging your leg, burning shoulder pain, etc). Therefore, continue to pursue treatment in a timely fashion.

Which leads me to point 2. While there are differences state by state(and I practice in FL), there is no neurosurgeon in FL who would be likely to take your case, purely based on insurance. Yes, I completely agree that our medical system is broken. Yes, the political infighting is frustrating. But we have to deal with the current medical climate.

Accident based medical insurance usually caps out at $10,000. That’s few MRIs, a few ER visits, and some consultations. You will almost certainly surpass that coverage before surgery is even scheduled. Why does that matter to the neurosurgeon? Because once you have started down a pathway with a specific insurance provider, it is exceedingly difficult to change(pre-existing condition issues). Therefore, if you have capped out your accident insurance, no one will get paid for your surgery. Even if the neurosurgeon donates their time, the largest expense is the hospital fees and they will be tens of thousands of dollars(at least).

So, as difficult as it may be, I would strongly suggest getting some additional insurance, getting a case manager with your new insurance provider(and you need to be sure the Chiari will be covered by the new insurance), and finding an MD with whom your are comfortable beginning a treatment plan.

An end-around to this entire game is to go to the ER, but you will simply get the MD on call for that day, not necessarily someone with Chiari expertise.

I know this aspect of medicine is frustrating(and it is the reason I sold my practice so I no longer have direct conflict with insurance companies).

I hope these thoughts have been of some guidance.


#10

Dr Trumble,
I’m not sure how I am just seeing this message now, but I greatly appreciate your response. This whole situation has been very frustrating for me, and I’m becoming exceedingly frightened of permanent damage from postponed treatment.
I am in the process of applying for insurance through healthcare.gov, as we don’t qualify for Medicaid, and medicare, (if i’m eligible) will take 24 months to be effective.
Unfortunately, my symptoms are only getting worse :frowning:


#11

Sounds like you are going down the proper pathway.

This is a part of American medicine we just get wrong.


#12

When I read stories about the medical insurance system I’m reminded of how fortunate I am living in Australia and ever so grateful health care is not as difficult or costly to access. We have a Public Health System called Medicare supported by a levy all Australians pay. It comes directly from your taxable income, it’s not optional. All Australians then have access to healthcare through the public system. For some services there is a co-payment government/patient but it does mean that all people can receive necessary treatment. We can purchase private health care, totally seperate from Medicare allowing access to Private specialists and hospitals. This can reduce wait times for specialists and surgery and patients can choose their specialist and when/where they wish to be treated. It must be stressful for some having to find money for medical insurance just to see someone, especially at a time when you’re unwell and often ones earning capacity is reduced.