I'm in Doc Hell and Can't Get Help

General
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Timeline first, then maybe you can help me logic out a plan with specific docs.

TIMELINE:

Age 11 - head injury with LOC for hours and weeks of amnesia. No doc. Broke nose and years later found out I had broken cheekbone. Start of migraines that never went away.

2015 CDC positive for Lyme disease. Got treated. It was whatever. Bell’s Palsy and cranial nerve neuralgias started.

2017 started seeing ENT docs for dysphonia. Kept losing my voice when teaching. Was told it was muscular, got scoped. Sent me to speech path instead of doing the CT I requested for Eagle Syndrome rule-out.

2018 started with MCAS and hives.

2019 stopped teaching because I had no voice. Went to another ENT. Got scoped again. My vocal cords do not touch. Asked for CT for ES. Refused again.

July 2023- In ER with severe facial pain. Swollen parotid, severe trigeminal neuralgia. Lost voice. Said it was parotid gland infection. Asked for CT scan with radiologist to look at styloids, they told me to stay in my lane.

Oct 2024 given LP during Guillain-Barre diagnosis process after severe food poisoning. Immediately had CSF leak symptoms. Massive hearing loss, tinnitus, vertigo, head pressure, could not stand up for two months. Asked for and was repeatedly denied a blood patch and never have received one.

July 2025 - Emergency ENT visit for pain in carotid when I felt my pulse. Could not move head without holding it up, could not speak or clear throat without severe pain. Asked for CT scan. I thought I was dissecting. Was given a stat ultrasound instead. Looked fine. Sent home.

All this time nauseated/fell over after elevators, vertigo and nausea when in a car, nausea when hearing certain sounds. Husband has to whisper, church organ made me throw up. Plus hearing loss. What I could hear was excruciating. ENT said hearing aids. I ALREADY HAD HEARING AIDS and could bear wearing them. Amplification was excruciating. Head pressure terrible. Deep fatigue. On disability. Tinnitus…can hear it on a highway. Increased trigeminal and glossopharyngeal nerve activity. Increased migraines. Increased head and neck pain and ear pain.

I thought this was all because of GBS. Been going on for 2 years. Just got medical records and there were two codes in there related to damage from lumbar puncture, so THEY KNEW.

G97.1 — “Other reaction to spinal and lumbar puncture" and Y84.4 — “Spinal tap as the cause of abnormal reaction of the patient, or of later complication, without mention of misadventure at the time of the procedure.” Also records show the resident stuck me 4 times, so that looks like misadventure to me, just sayin’.

Since Oct of 2024, I have had five flares of inability to walk. Thinking it’s CNS and was trying to see neuro for MS rule-out. Waiting for my appointment in JUNE OF 2027.

July 2026 - ER visit for numb legs and inability to walk. While there I told ER doc about Eagle suspicion and she had radiologist measure styloids and they are elongated. 3.2 cm on right and 3.5 cm on left. Most symptoms are on the right. The consulting neurologist told me I have anxiety before I was discharged.

THEORY: I have a 2-year old CSF leak that is somehow exacerbating ES. I do not have MS, but the mobility stuff with legs intermittently giving out, and other nerve issues may be from the ES and CSF leak together. Maybe my brain has less cushion and like, sagged or something?

I made an appt on my own to see a doc at MUSC in Charleston, SC and drove four hours each way yesterday for the WORST DOC APPOINTMENT I HAVE EVER HAD. I gave my records, a bullet-pointed highlight of symptoms and dates, and CT scan with styloid measurements. She said I needed to see an ENT for my hoarse voice.

It’s a medical Sisyphean state. Rolling rock up hill, no one listening, rock rolling back down hill for years, like a lot of us.

DISCLAIMER:

Highly allergic to gadolinium. Get hives (not anaphylactic YET) from iodine contrast but may be able to manage with Benadryl, also get steroid psychosis and cannot take steroids at all ever.

NEEDS:

Find a doc who understands that there may be comorbidity of CSF leak and ES.

Find one who will help me get imaging with my anaphylaxis.

Sorry this is so long. I’m literally about to give up I can’t live like this anymore. I thought of crashing my car on the way home from Charleston. I’m at the end of my rope.

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I am so, so sorry for what you’ve been through & for the resistance you’ve had from doctors who were unwilling to order you the CT scan you requested. It’s unbelievable that it would be so difficult to get that simple test to at least rule out ES.

Your symptoms at this point sound like you may have internal jugular vein compression/vagus nerve compression or injury (vocal loss, nausea, hearing loss/hyperacusis, head pressure) & possibly also internal/external carotid artery compression based on limb numbness, vertigo, carotid pain.

CSF leaks sometimes heal up on their own, but if you’re still feeling symptoms of low pressure, then perhaps yours hasn’t. It’s also ridiculous that you have to wait until June of next year to see a neurologist. Is this the only one in your state?!

Here’s a doctor in your state who is experienced w/ ES though I can’t say whether he has experience w/ CSF leaks. We’ve heard very good things about him:

•Dr. Nelson May, Wellstar ENT, 699 Church Street NE, Suite 340, Marietta, GA, (678) 355-1620. Michael Vick, MD - Otolaryngology

Doctors who do surgery for vascular ES & who offer telehealth initial consults which you could do from home are

•Dr. James K. Liu, 200 S. Orange Ave, Ste. 265, Livingston NJ, Dr. James K. Liu | Top Neurosurgeon in Livingston, NJ

•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS

These doctors are booking out several months. If you leave a message vs talking to someone in the office, it may take several weeks before you hear back. It’s not wrong for you to call weekly to try to speak to someone. I believe Dr. Liu has an online form to fill out for a consult request & I’m not sure about Dr. Costantino.

I hope & will pray you’re able to get a more official diagnosis soon so you can start making steps forward toward recovery.

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That sounds awful and to be denied a CT is crazy! I’m so sorry that you’ve been treated like that and outright mistreated by the sound of it with your LP!

I do wonder if it’s worth looking into whether you could have a tarlov cyst- some members have mentioned this, I don’t know much about it but it could explain some of the leg symptoms, CSF issues etc and could’ve been exacerbated by the LP? Another rabbit hole though…

I do agree that it would be better to see a doctor with experience of Vascular ES, so @Isaiah_40_31 has given you two suggestions.

We’ve had some discussions recently about reactions to contrast agents, @callove posted this:

We’ve also had some discussions about spiky leaky syndrome which might be interesting for you to read, as this could be relevant for you:

Spiky-Leaky Syndrome | The EDS Clinic

Please don’t give up, keep fighting, there are doctors who can help :hugs: :folded_hands:

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I am so so sorry for all that you have been through! I was initially denied my ct scan as well, and had to get another opinion to get it done. It’s so frustrating and in some cases it has been grounds for malpractice lawsuits.

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@DawnSue I am so saddened by everything you have gone through. @Isaiah_40_31 and @Jules have given you good direction and I hope you can find the strength to continue your journey and find some peace.

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Thank you for such a helpful reply. I really appreciate the information and your time.

I had Dr. Liu on my list from individual research. I watched some of his lectures and talks on YouTube and he makes a lot of sense to me. Couldn’t figure out if I needed the right imaging before I see him, so I hadn’t contacted his office until today.

I’m annoyed that the neuro at MUSC that I saw on Tuesday took my medical records and didn’t give them back (please, don’t anyone ever go there for neuro help).

I have been overwhelmed, I pulled out and highlighted and put colorful stickies on the important data in the original records, thinking they would copy them, like they have at other offices. I was so blown away by how bad the appointment was that I forgot to get my records back so now I need to request them again from original hospital system, I guess.

I will need them to give to Dr. Liu’s office.

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Thank you so much! I will read up on that info. I’m scared that people are suggesting that it might be vascular. That’s the thing I am more afraid of than anything else, but if it’s reality, I have to face it.

I had never heard of a Tarlov cyst until you mentioned it. I’ve had a bunch of imaging done when I first got GBS and no one mentioned it, but honestly, they missed a lot. Radiology was phoning it in that day, I think.
I was born with a sacral dimple and they called it spina bifida occulta, but I thought it was asymptomatic.

Also, thank you for the info on the non-gadolinium options that are coming into play. I don’t feel like dying from anaphylaxis just because they said they “would be on hand with epinephrine if something goes wrong.” That’s what they told me when they wanted contrast imaging with GBS. Gadolinium has got to be a hard no for me. Thank you again!

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THANK YOU! This means more than you know.

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I’m sorry you went through that. It’s maddening. Thank you for sharing. I’ve never been litigious, but after I found the codes for damage from LP in my chart, and knowing I have gone to multiple docs and had multiple ER visits to that same hospital system, AND NO ONE MENTIONED IT…makes me feel like suing the puddin’ out of someone.

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@DawnSue - You can contact the MUSC office & tell them you need your medical records back. Hopefully they’ll mail them to you since they were negligent & didn’t give them back. You shouldn’t have had to ask for them. That should have been automatic. If nothing else, what you suggested about requesting an additional copy from the original hospital system, but if you can get them back from MUSC, that’ll save you time not having to re-highlight & tab a new copy.

I sure don’t blame you for feeling that way. Just know that hospitals keep high power attorneys on call, & it’s rare that a patient wins a case. If a patient wins, it’s many years down the road, & a very exhausting experience. :unamused_face:

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I wouldn’t mind trying to fight it anyway. Is it bad to use pettiness and revenge temporarily as motivation to stay alive? (Noting that I will probably feel better when I find a doc willing to help me find an answer and possibly try to alleviate the daily agony).

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@DawnSue @Isaiah_40_31 sadly yes but turning them into the State Medical board can be quite satisfying.

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I keep forgetting that’s an option, @MGORNEAU, even though you’ve frequently mentioned it. It’s less expensive & time consuming than suing - that’s for sure!

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@DawnSue I so get it. When this first started, I was in so much pain and I trusted the medical system. Before I knew it, I was being labeled a hypochondriac and pushed toward pain management, which I never pursued. I really had very little experience with the medical world at that point.

Then I started realizing what had actually been going on, the stonewalling, imaging from years earlier that showed abnormalities, and even later imaging clearly showing findings while still somehow concluding there was “nothing there.” All within the best of the best in Boston.

That was the turning point for me. I went from praying God would just take me because I was so tired of the pain, to thinking, no way in Hell am I leaving this planet before these bullies are held accountable.

So I truly get it. Their actions became fuel for me to keep advocating, keep digging, and keep pushing through. And yes, I do file complaints, because as @Isaiah_40_31 said it is hard to hold them accountable in a court of law.

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@Isaiah_40_31 and many times the only way to hold them accountable and hopefully create change.

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Thank you for sharing this. I will reply properly tomorrow.

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You certainly have been through a journey

Just a word on lawsuits. I just finished a 5 year lawsuit this week. On top of dealing with Jugular vein stenosis the lawsuit was grueling. In my case it was a MVA injury .The paper work is overwhelming and the only person that loses is the person who is injured. Mentally it takes alot out of you. Not sure this is what you need at this moment

Wishing you sucess with Dr. Lui

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I hope you received some benefit from the lawsuit, @Bmmac!

Have you gotten any relief from your IJV decompression surgery?

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I am so sorry. Heinous.And I’m sure we aren’t the only ones. I hope things are better for you now. I’ll go through the forum and read and see if I can get your story/updates.

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@DawnSue I am sure we are not. I think it happens a lot. The surgery I just had with Dr. Liu was a step in the right direction, so I’m praying I continue to find good doctors!

I actually haven’t shared much of my backstory on the forum. There is just so much to it.

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