TL;DR my 70 year old mother is caught in a seemingly never ending cycle of specialist referrals and delays that are causing her to live in absolute misery. Do we have any recourse at all to expedite her care?

Forgive me in advance for the length of this, I'm not totally sure what is relevant and also I'm emotional so some of this is just a vent.

Last year, my mother (70 years old) experienced a CSF leak in her skull and had a cranioplasty to repair it in December. At that time, all of her symptoms were immediately alleviated.

In April of this year, she began suffering from headaches and neck pain. Over time, her symptoms have worsened to include dizziness, pressure, vision problems, brain fog, memory loss, and difficulty with keeping her balance.

She first saw her original neurologist at Lone Star Neurology in May and he ordered complete skull and brain MRI, suspecting another CSF leak.

At that time, she had to have surgery to remove her Inspire implant (for sleep apnea) in order to complete the MRIs ordered. This of course resulted in a delay.

After waiting nearly 6 weeks after the MRI to see her neurologist again, he informed her that he was not able to locate the leak and he referred her to a neurointerventional radiologist at Radiology Associates of North Texas. Initially, he referred her to the wrong person. This resulted in another lengthy delay.

When she eventually saw the correct radiologist, he informed her that he couldn't treat her either and stated that her problem is so complex that she will likely "need a team of neuro specialists" to diagnose and treat her.

At that time, he referred her to UTSW. When we contacted UTSW, they stated that they first need her to have a myelogram without contrast before they can schedule her to see a physician. They also informed her that once they have the myelogram in hand, their wait list is 3 months long. They kicked her back to her original neurologist at Lone Star to order the myelogram.

Since then, the neurologist has twice sent incomplete orders to the lab, which has resulted in her not being able to schedule the test. At this point, we have been waiting for over a week for them to send the correct orders.

Mom's symptoms are so severe that she is barely functioning. She is the most intelligent person I know, and she struggles to form complete sentences. She had to resign from her adjunct faculty position teaching undergrad math because she literally cannot communicate lessons that she's been teaching for decades. Her quality of life, frankly, is *****

I should add in case it's relevant, that occipital nerve block injections do give her relief from the pain for about 3-5 days, but they do not alleviate her other symptoms. She's been getting the injections weekly from a Nurse Practitioner for a few weeks now.

I have been handling all communication with doctors due to her cognitive impairments, but it's become a full time job. I finally set up an advocate through Solace Health, so that at least has taken the endless phone calls begging people to do their jobs off my plate.

My point/questions: what else can we do to speed this along? Is there any possible way besides begging and pleading to get her neurologist's office to handle their end correctly? Is there something totally outside the box that I should be doing? I'm honestly open to taking her out of state for care if we have to; just not even sure how to go about doing that.

It was suggested to us by multiple people that we go to the ER at UTSW, explain her symptoms and hope that they admit her. The thought process being if she's in the hospital, it kind of puts her in front of the line to see their specialists. I'm not even sure if that's true? Any insight into if that's a good strategy or not? My fear is that we'd spend a miserable day there only for them to decline to admit because she's not actually in danger of dying (that we know of).

If you've read this far, I'm really grateful. Very happy to hear absolutely any suggestions or feedback. I've never felt so helpless in my life.

I'll just say you have to be very aggressive and persistent. Not aggressive as in angry, but rather polite but insistent. The receptionists should know you by the sound of your voice each time you call twice a day offering to be helpful in any way you can to move the process forward.

I also wonder if there is an advocate you can employ with specific expertise in getting results from this type of bureacracy

Unfortunately this office employs an answering service not based in the US, which adds another layer of frustration (long hold times, language barrier, never talking to the same person twice). They absolutely refuse to provide a number to contact them directly - we do have an email, but it is also routed to an outside service.

The first time we were waiting for them to send a referral, I actually ended up going to the office in person to ask if there was any other way to obtain it besides just waiting until the physician was good and ready to complete it, but the front office acted like it was something that was out of their hands and didn't send it until three days later. I was extremely polite in that interaction, despite the fact that I'd spent 5 hours the day before on the phone asking for an update.

No advise but I feel your pain. Having been in the medical system a lot this year for my own issues our medical industry is a giant cluster ****.

I am very sorry you're going through this. I can tell you that even physicians have trouble navigating the system these days. Private equity, insurance, and the government have ruined healthcare.

That being said, going to the ER is maybe not the best option. Though it could be. Generally speaking, in order to be admitted, you need an admittable diagnosis. Even if the ER doc wants to admit a patient, the inpatient team might not take the admission. UTSW has residents, and they generally push back on ER admissions unless it's an obvious need for admission.

But if she does get admitted, she may see a neurologist, but it might not be the one she needs. If it's not a procedure or test that requires admission, she will likely be discharged and told to schedule a clinic visit or test on an outpatient basis - though they may be able to get her scheduled for follow up before she leaves.

Ultimatly the ER is a gamble. As an ER doc, I wouldn't do it unless I had talked to the admitting team and they said that's the best way to get her in. Especially at a large intitution like UTSW, where she may sit in the waiting room for hours waiting for a bed to open up (not sure how backed up they are these days).

I would get ahold of her medical record from her neurologist, and probably call or even visit multiple neurology clinics close to you with a copy and a cover letter basically asking the front desk staff to give to the neurologist where you briefly summarize her issues and ask for help.

I don't live in Texas, but I can ask if anyone in the DFW area is willing to help.

Also, what kind of myelogram do they want? It's not a lab order, but an imaging order. Who has said it's the wrong test/incomplete order?

One way to get around the ER/resident admission issue is to see if her current neuro has admitting privileges there or if he can refer you to one who does and have them direct admit her to the hospital. Once you get into the hospital there is typically a patient advocate or ombudsman assigned that you can work with to try to get things scheduled and setup more smoothly and efficiently.

Er route might work, might not -- depends on ER doc and admitting teams that day


Given the degree of functional deterioration, it's definitely a Neuro urgency

I would create a brief outline, print out MRI reports, bring disc too if different system, and pitch it to ER,
A myelogram could happen in 1 day

What was the cause of the initial CSF leak? Did they try to manage with a lumbar drain initially? Did her most recent MRI brain show findings consistent with intracranial hypotension? Are her current symptoms postural in nature? Has she followed back up with her initial surgeon?

When strongly suspecting idiopathic intracranial hypotension as opposed to a leak secondary to a procedure, trauma, mass, a non targeted epidural blood patch can be arranged for pretty easily. Bilateral sphenopalatine ganglion blocks are sometimes done as a second line option if the working diagnosis is intracranial hypotension as well.

There are neurologists with sub specialization in interventional pain management. I do not have a specific recommendation for your area.

Best of luck and apologies if the above strays too far from her actual current condition.

Thank you all for your empathy and feedback.

To answer a few questions:

The imaging order should be, according to UTSW for a MR myelogram without contrast of cervical, thoracic and lumbar spine. Lone Star Neurology has repeatedly sent (at least three times) an order for a cervical, thoracic, and lumbar MRI.

Late yesterday the advocate was so frustrated with Lone Star that she insisted they complete a referral to UTSW and now the plan is for UTSW to order the myelogram. Why that wasn't the suggested course of action from the beginning is beyond me. So inefficient. But at least we're (hopefully) done with Lone Star and can transfer her care completely to UTSW. Also, I'm learning more and more about what to ask for, so I guess that's good. Just frustrating that navigating everything has to be so difficult.

The initial plan with the interventional neuro radiologist was for him to perform a blood patch. But after he saw her MRI results, he stated that he couldn't identify/locate a leak and did not want to do a "general" blood patch (that's not what he called it, that's just how I understood it), which is why he passed her to UTSW by way of her neurologist.

This is the assessment from her last neuro visit:

1. Intracranial hypotension, unspecified
2. Orthostatic hypotension
3. Dizziness and giddiness
4. Other lack of coordination
5. Cerebrospinal fluid leak, unspecified

If by are her symptoms postural, you mean are they worse in certain postures, yes. She has a lot more pain, pressure, and dizziness when she's upright. It gets worse the longer she sits upright. It does not resolve completely when she's lying down, but it's more bearable.

The initial cranioplasty was performed by an ENT and a neurosurgeon at Medical City Dallas. When her symptoms presented again, she did follow up with them and they both sent her back to Lone Star Neurology for diagnosis.

If UTSW doesn't order and complete the myelogram by early next week, I think I am going to push for her to go through the ER. I know it's a gamble, but things literally can't get any worse.

Thank you all again for taking the time to read my frustrated rambling and offer sympathy and insight. I appreciate it.

This is just my own experience, but my father was under the care of an oncologist and things went downhill so fast, by the time he got to his appointment his breathing was so bad the doc wanted him to go to the ICU immediately. Fastest way was to hit the ER and the onco made some calls. It took about 4 hours in the ER to get the docs coordinated and the tests run to justify (on paper) the move upstairs, and he was admitted to the ICU that evening. Due to the onco's privileges, this was the public University hospital but with skilled ICU upstairs so they wanted him out of the ER as much as we did. Overall it was a pretty smooth process.

I am so sorry you are going through all this and hope you are able to navigate through to treatment ASAP.

Was the MRI of the brain done only without contrast,
with & without contrast,
Or was it a Cisternogram?


MRI myelogram of the neuroaxis will be less fruitful than CT myelogram with contrast