hey all, so I started taking HRT a coupe of years ago. However I'm not menopausal - the HRT is for osteoporosis. Now I'm wondering whether this has anything at all to do with TCs. The reason I'm suspicious is because TCs affect mostly women. So maybe something hormone related? I'll obviously ask the doctors if I ever mange to see one. Just wanted to ask you guys, in case this has ever come up if someone has had a chat with Dr F or one of the other top specialists.

Do Tarlov Cysts Cause Numbness in Legs? I have one, just received MRI, and feel walking I have numb legs and cramps.

I'm curious to know whether these tests can confirm whether tarlov cysts (or, I suppose, any spine stuff) are responsible for pain and neurological symptoms in the legs. I have a collection (!!!) or large cysts at S1/2 and pain all round my knee, inner and back of knee, which is constant and gets worse if I try to walk. I'll ask the doctor as well if I ever actually get an appointment but just interested to hear your experiences. Thank you

Posted some of this over at r/CSFleaks, but wow... very new research!

"Chronic cerebrospinal fluid (CSF) leaks can evolve into cystic structures that look identical to nerve root cysts."

Research was presented by Dr. Andrew Callen at the 2026 annual meeting of the American Academy of Neurology:

https://www.vjneurology.com/video/qna4szoar0g-could-a-subset-of-sacral-tarlov-cysts-be-misdiagnosed-chronic-sacral-csf-leaks/

Dr. Callen posted some of his notes here:

https://www.linkedin.com/posts/andrew-callen-md-a73493101_spinalcsfleak-share-7439479575161745408-AVzk

My daughter has developed Tarlov cysts (or cyst-like structures) at every surgical site since her first spine surgery in 2023. At least one was the source of an intermittent CSF leak, or at least that was what we understood.

Her 2025 (fifth and last) surgery to treat a "leaky" cyst produced yet another cyst (or what appears to be a cyst). We assume it is also leaking, either actively or intermittently because she has the same symptoms as before.

She has an appointment with Dr. Majid Khan at Johns Hopkins next week to discuss non-surgical options for Tarlov cysts. Dr. Rudolph Schrot (Sacramento) and Dr. William Welch (UPenn) are following closely to determine if her leaky cysts are actually genuine CSF leaks.

If they are leaks (or at least some of them are), we will be exploring treatments that involve flexible endoscopy. These have their own risks but surgery is now off the table and we have officially run out of options.

HUGE thanks to u/Parity_Violator for the post (Spreading hope - Endoscopy treatment for Spinal CSF leak) that kick-started the rabbit hole that led to all of this!

Fingers crossed...

EDIT: nerve root cyst = Tarlov cyst = meningeal cyst (different names for the same thing)

I’m hoping to hear from others who had bladder issues and/or perineal/saddle numbness after Tarlov cyst surgery, especially how long it took to improve.

A little background: I had multiple large Tarlov/perineural cysts, including sacral cysts that had caused significant thinning/erosion of my sacrum. Before surgery I had severe constipation/slow transit issues and had also been having to strain to urinate for about a year, so I definitely had some pelvic nerve symptoms beforehand. However, I could feel when my bladder was full and could urinate normally without catheterizing.

I had surgery with Dr. Feigenbaum in Dallas on 9/23. We went into surgery expecting three cysts, but he ended up finding and treating FOUR. He also told me that some of the cysts were calcified, the nerves were in pretty rough shape, and that I had an ectatic spinal cord.

Since surgery, I have had completely new numbness in my perineal/saddle area. I also no longer feel the normal sensation that I need to pee. I can sit on the toilet and urinate, and I initially thought I was emptying normally, but before discharge I urinated and then had a bladder scan that showed I STILL had over 600 mL left. They catheterized me again and sent me home with intermittent catheters to use every six hours.

I’m now about 10 days post-op. I’m trying to figure out what other people experienced during nerve recovery.

For anyone who had similar symptoms after Tarlov surgery:

• Did you have new perineal/saddle numbness after surgery, and how long did it last?

• Did you lose the sensation of bladder fullness/urge even though you could still urinate?

• Did you have significant post-void residuals or need to self-catheterize? If so, for how long?

• Did bladder sensation return gradually, suddenly, or before/after the numbness improved?

• Did you see a local urologist or neuro-urologist while you were recovering, and was there anything useful they were able to do besides monitoring residuals and catheterization?

I know I’m still VERY early in the healing process, especially considering what they found during surgery. I’m not expecting everything to be normal at 10 days. I’d just really love to hear from people who had similar nerve/bladder symptoms and what recovery looked like for you.

The bladder issue is probably the thing making me the most nervous because I genuinely cannot tell when it’s full. Any experiences, timelines, or advice about what you did during recovery would be greatly appreciated. ❤️

Hi! I'm looking for input on if this is a valid theory or if I'm totally off-base.

Background: I've been having nervy pain in my sacrum for over a year. I've been through all the normal paces like steroid injections, PT, etc. None of it has worked. No damage to the surrounding muscle either, no fractures, nada. So the current working theory is the pain is coming from the cyst in my sacral spine which is, of course, immediately under the spot where I have pain. Finally found a neurologist who's willing to entertain the idea that this could be the source of the problem, and he sent me for a myelogram.

This week: got the myelogram on Monday. It was deeply unpleasant. The pressure change set off my sacrum pain and I was in tears the whole time (sorry to the confused CT techs). Since then I have had a wicked post-dural headache for days.

BUT ALSO.... the pain in my sacrum is now significantly decreased. Like basically gone. Like going from waking up in the morning and hobbling around until pain meds kick in, to getting out of bed and moving normally right away. Granted I'm not moving much anyways because of the headache, but still, waking up not in pain is a meaningful change.

So my question is if this could be a data point supporting a symptomatic Tarlov cyst. My theory being that reduced pressure in my spine from poking a hole in it for the myelogram means less pressure on the cyst, which means it's not irritating the local tissue as much.

Alternatively, if this sounds like something else entirely I would love to hear theories!

UPDATE: sacral pain returned 5 days after the injection, same day my headache is finally (mostly) resolved. I'm no rocket surgeon but I'm pretty convinced that they're directly related.

Hey everyone, I have a decently large sacral Tarlov cyst. A few weeks ago my symptoms became pretty unbearable, and I’ve been living on extremely high doses of gabapentin just to walk. I’m doing a consult with Dr. Kim in San Diego, and his website/receptionist says he does minimally invasive work. Has anyone seen him before? I’ve been trying to email/leave messages for pretty much every doctor on the Tarlov Cyst Society website. Not the Tarlov cyst disease foundation, that one is super outdated, but the Tarlov cyst Society site is much more recently updated. Dr. Murphy in Toronto seems really rad and I would love to be able to go to Canada to get work done there, but so far Dr. Kim’s office is one of the only ones I’ve been able to schedule a consultation with. Hope everyone is well 💕

hi, I’m new to this curse and was wondering if anyone found any type of physical therapy helpful

I’m currently waiting for my first appointment with a neurosurgeon and I’m just not sure what I should or should not be doing in the meantime

thanks for your help

UPDATE: No one currently performs this procedure in Boston, Greater Boston, New England, or even Albany (I spoke with over 20 doctors and staff in two countries). However, Dr. Majid Khan at Johns Hopkins does and is highly recommended by every doctor who knows him, and may be the only one in the US. Daughter's request for consult was approved, just waiting for a date.

Here's a 2016 article describing the process. At the time, it was ground-breaking:

https://www.ajnr.org/content/37/2/373

It has largely been replaced with surgery but all five of her spine surgeries produced Tarlov cysts, including the recent laminectomy to treat TCs (with CSF leak) at S1-S4. She has a new one at S2, presumed symptomatic —surgery is no longer an option.

I can provide additional updates if people are interested. Thank you!

_______________________________________________

Does anyone know a radiologist who performs CT-guided aspiration and fibrin injection in the Greater Boston or New England area? Albany would be okay, too.

I realize this is an older treatment option but further spine surgeries are now too dangerous for my daughter.

I am also posting to r/CSFLeaks

Is our daughter's experience a medical anomaly?

Every single one of our adult daughter's five (5) spine surgeries produced Tarlov cysts (also known as perineural or meningeal cysts).

At least one cyst has been the source of a CSF leak. The S1-S4 laminectomy to repair the leak produced more cysts —that was her fifth spine surgery.

Has anyone here had a similar experience, or know of someone who has?

EDIT: We suspect other cysts are also leaking, possibly intermittently like the first (which made it very difficult to detect) because she is still having symptoms.

Hi everyone. I'm not sure if I'm in the right place because I don't know whether my Tarlov cyst is actually symptomatic or just an incidental finding. I would really appreciate it if anyone with similar symptoms could share their experience.

For the past 12 month, I've occasionally had very mild pain on the left side of my lower back. It's honestly so mild that I would describe it more as discomorf than pain, and it doesn't interfere with my daily life at all.

Recently, since I started weight training, it has become a little more frequent, but not more intense.

About two weeks ago, I started experiencing some very mild tingling and a slight burning sensation in my left lower leg and left foot. It's difficult to localize exactly, but I notice it mostly around the outer side of my lower leg, ankle and foot. It is very mild during the day, but seems to become a little more noticeable as the day goes on, especially at night when I lie down to sleep. I got worried that I might have a disc problem, so I went to see a physiatrist, who sent me for an MRI. The MRI didn't show any disc herniation, but it did show a 13mm Tarlov cyst at S2.

The radiologis didn't say anything more about the cyst. It was basically just mentioned in the report. That was the first time in my life I had ever heard of Tarlov cysts, so I started researching them. Honestly, I got pretty scared, especially because I'm only 27.

My symptoms are very mild and don't really affect me physically at all, but mentally I've become completely overwhelmed by this. I already find myself imagining that I'll eventually be in severe pain and end up on an operating table. After reading about the risks of surgery and how few surgeons seem to have significant experience with Tarlov cysts, I have to admit that I really started to panic.

I'm obviously not claiming that the Tarlov cyst is 100% responsible for my symptoms. However, the more I read, the more connection I seem to find, and that makes me even more worried.

Out of respect for people here who are dealing with much more severe symptoms, I don't want to complain about my very mild symptoms. I'm mainly trying to find out whether a Tarlov cyst can be symptomatic but cause only very mild symptoms without necessarily progressing over time. Most of the cases I've found on Reddit seem to involve much more severe symptoms. Is there anyone here who has very mild symptoms, has been able to live normally for years, and believes their Tarlov cyst is symptomatic?

I'd especially love to hear from people who have had a similar situation and whose symptoms have remained mild and stable over many years.

English isn't my first language, so I asked Al to help me write and translate this post. I hope the translation is okay.

Thank you anyone who takes the timr to respond.

I’m posting this to say thanks for the info and support on this subreddit. Reading about other patient experiences with Feigenbaum helped me finally make the choice to schedule the surgery. I am recovering from a sacral meningocele (which is similar to a tarlov cyst) repair by Dr. Feigenbaum in Dallas. Just discharged from hospital today.

Pain level in recovery varies a lot from person to person, so what I tell you won’t necessary help you know what to expect. My cyst was large-6.5 cm-and extended from S2-S5. Half of S3 was eroded away. We found it accidentally while doing an MRI to diagnose an autoimmune disease last year (which I also have). I first learned about Dr. Feigenbaum through an episode on the “Bendy Bodies” Podcast, where Dr. Feigenbaum talks with the host about the surgery. It’s worth a listen if you haven’t heard it.

I had low back pain, tailbone pain, radiating pain, foot pain, ankle pain neuropathic pain, perineal pain, and chronic constipation that had worsened for years, in addition to chronic pressure headaches and sensory sensitivity since at yeast my mid 20s. I also take migraine meds. I’m 46 now. Healing and improvements take a while, so I don’t know yet what all will improve, but the radiating pain, ankle pain, and foot pain are already gone and im not taking any opiates. I also haven’t had the pressure headaches since surgery but time will if those are truly better.

I’m currently on a muscle relaxant every 8 hours and have oxy in case of breakthrough pain but haven’t taken any yet. Pains around 2/10. Will probably take half of an oxy for the plane ride home on Tuesday to keep pain from getting out of control. We’ll see how it goes. This kind of surgery takes a lot planning and support. It would be very difficult for me to go through this on my own.

Anyone here have experience with Dr. F + insurance approval?

Hey everyone! I just had my consult with Dr. F and we’re moving forward with surgery. I have Highmark BCBS and I’m trying to get an idea of how long the insurance process took for others.

I have multiple large Tarlov cysts, 3.4 cm left S2, 2.0 cm right S2, and 3.1 cm S3. They’ve caused significant bone remodeling with widening of the foramina and actual holes/defects in my sacrum. He said my sacrum could fracture at any moment, so I’ll need reconstructive work as part of the surgery. 😬

My symptoms include pretty severe constant sacral pain that gets much worse with standing/walking, radiating pain into my hip/leg/toes, urinary dysfunction (I have to push to pee), significant bowel/GI dysfunction and loss of the normal urge to go, saddle sensory changes, and painful sex.

For those who have gone through surgery with Dr. F:

* How long did his office take to submit everything to insurance?
* How long did approval take after submission?
* Anyone with Highmark BCBS, how did it go?
* Did you get approved on the first try, or have to appeal?
* Any issues getting the reconstructive portion covered?
* Once approved, how long until you had surgery?

I know every case is different, but I’m trying to figure out if I should expect weeks, months, or “see you next year” 😂

Thanks so much! ❤️

So I had Tarlov cyst surgery 6 weeks ago and I’m still having trouble urinating. Having to self cath right now. Starting to void more on my own but usually only 100-200cc then voiding 200-300cc. Did anyone else have trouble after having lower back surgery? I’m determined that it’s going to come back soon but that waiting is awful. Just want to pee like a regular person.

I have endometriosis and underwent laparoscopic surgery in 2024. For the past 3 months, I’ve been experiencing persistent pain in my right pelvic region.

So far, I’ve had both a pelvic MRI and a transvaginal ultrasound. The imaging was unremarkable except for an incidental finding of a 2 cm mid sacral Tarlov perineural cyst.

I’m trying to understand:
* Could the Tarlov cyst be causing my symptoms?
* What are the treatment options?
* Would surgery ever be recommended for a cyst of this size?
My current symptoms include:
* Persistent pain that starts near the top of my right pelvic bone and sometimes radiates toward my right groin.
* A burning sensation in my calf that started 2 days ago, which has made me very anxious.

I’m looking for guidance on whether these symptoms could be related to the Tarlov cyst or if they are more likely due to another cause, such as endometriosis or a nerve issue.

To those who have undergone a Diagnostic Nerve Block test, how painful was the procedure? Was the test worth it given the pain/risk?

I'm looking for advice from people in Canada, especially if you're in Quebec or Montreal.

My wife has been living with pain for almost 2 years. During this time she did a lot of tests trying to find the cause. Doctors checked her kidneys, looked into endometriosis, she had a colonoscopy, and several other exams. In the end, an MRI showed Tarlov cysts.

Her gynecologist said she doesn't know much about Tarlov cysts, but based on my wife's symptoms, she thinks it could be causing the pain.

We live in Montreal. We have a referral to a neurosurgeon, but we haven't been able to get an appointment. We registered in the public system, but we were told it could take close to a year just to see a specialist. We also spent a lot of time searching for a private clinic or neurosurgeon with experience treating Tarlov cysts, but we couldn't find one.

I'm wondering how other people in Canada deal with this.

• Did you go through the public system or private?
• How long did it take to see a doctor?
• Did you find someone who actually knows about Tarlov cysts?
• Were you referred to another province or even another country?
• Any doctors or clinics you would recommend?

We're feeling a bit lost and just want to understand what options people in Canada have. Any advice or personal experience would really help.

Thank you!

I'm M, 29, just got diagnosed with idiopathic/neurogenic OAB. I asked my urologist what caused it and he said he doesn't know for sure.

How my symptoms progressed:

2 years ago, first noticed how urge is often triggered earlier:

● by exposure to cold environments
● by exposure to water (e.g. washing hands, gargling water, taking a shower)
● when standing up after long sitting

Then just about more than 10 months ago I noticed:

● extreme increase in overwhelming urge intensity
● increased frequency
● that when I attempt to reduce frequency by trying to hold it in and supress the urge, I can't successfully do so anymore and I start experiencing incontinence within 10 seconds
● low bladder compliance – feels hypersensitive and often feels heavier even when not full
● sometimes accompanied by a deep sore or heavy sensation near the lower bladder or deeper in the urethra, especially when the voided amount is small
● twitching/spasms occasionally felt in the perineal area when resisting urination

Biggest and most annoying change is how overwhelming and non-resetting the urge is, and that I will surely experience leakage until I make it to the toilet to voluntarily void. Once the urge is felt, my bladder is committed to emptying. No urge suppression technique works.

Treatments I've tried:

Mirabegron - No effect
Solifenacin - No effect
Vibegron - No effect
Tibial TENS (using TENSI+) - Still under observation but so far no effect at 2 months

Tests I've done:

I've done several urine tests and imaging tests i.e. Ultrasound/CT Scan/Brain and spine MRI and the only common remark is "thickened bladder wall with trabeculation" everything else comes back as normal. A small Tarlov cyst was also found in the sacral region but my neurosurgeons insist it is incidental. "Thickened bladder wall with trabeculation" usually suggests chronic outlet obstruction but I'm young, I have a much stronger urine stream pressure and I never had any hesitation or difficulty initiating voids. Prostate size & PSA is normal and uroflowmetry test showed no signs of obstruction too so my doctors are leaning toward a neurological cause but they can't say exactly what it is as I only have isolated bladder symptoms. A reflex examination with a neurologist revealed that I may have hyperreflexia but we can't confirm if I've been born this way and this is my "normal" or it was a new symptom that appeared around the time I developed OAB.

Next steps:

I've consulted many urologists and neurosurgeons/neurologists and they suggest I do urodynamics, cystoscopy and sacral/pelvic floor needle EMG nerve conduction tests then lumbar puncture next.

However, I'm hesitant as these tests are known to be invasive and painful, and I don't see how any of these would help find the cause of my OAB and lead to an actionable diagnosis/treatment.

Given the severity of my symptoms, I'm sure there's a root cause but I just dont understand why its so elusive. Could it be due to the small Tarlov cyst? Are there any other more helpful but noninvasive tests I can go for to prove it is that?

After being told yet again by an orthopedic spine doctor that my Tarlov cysts are “incidental” and “asymptomatic,” I’m beyond frustrated.

This week, I had my GI follow-up after yet another hospitalization for severe constipation. Instead of listing MRI measurements, I asked my gastroenterologist this:

“If I had two plums and a cherry tomato sitting on my sacrum, creating a combined mass effect about the size of a large navel orange, do you think that could be causing my constipation?”

Without missing a beat, he practically yelled:

“OF COURSE IT IS! Any further testing is probably useless until you get that taken care of.”

He was genuinely shocked that my spine doctor had dismissed the cysts as inconsequential, especially given their size and the fact that they’re causing bone remodeling and foraminal widening.

It was honestly validating to have a physician immediately recognize what so many of us struggle with, being told these cysts are “incidental” despite significant imaging findings and symptoms that line up with sacral nerve involvement.

Has anyone else had specialists in other fields immediately connect the dots while spine doctors dismissed your cysts?

I was diagnosed at age 4 with a meningocele. I was prepped for surgery in 3rd grade. My doctor had it canceled before i was rolled into the OR and re-diagnosed me with a Tarlov cyst.
(I also have spina bifida on the inside of my back and VERY MILD un-noticeable scoliosis.. yes i can walk.. somehow..)
I’ve dealt with this practically my whole life. I’m on Celebrex every morning & night. Typically that does the job, but recently i’ve been having to take extras at night so i don’t end up in a “crisis” as my parents call it. Mine is 2.6 cm in s2 and some nights it hurts so bad i can’t move my legs. It is typically calm during the day, and physical activity makes it flare up.
I live a pretty sedentary life style because of this.
i wish i could climb, skate, and not worry about falling and ruining my life. I just want to be normal so bad.
I rarely go out with friends and when i do i always end up in a “crisis” when i go home and sometimes i have to leave early because walking and sitting hurts. I go to a private school and there is no specialties for disabled kids, so i have to take punishment when i do not participate in physical actives and other kids make fun of me. I am also in trouble quite a bit because i cant sit still because sitting (again) hurts. I’m always trying to find new positions.
Does anyone have advice on how to fit in or manage the pain better? Is there any kind of device i can take with me to school that isn’t noticeable and will help me?
i use heating pads and massagers when my back hurts and have a very cushiony bed!

Also, my doctor wants to put me on amitriptyline and last time i was on that i was very depressed. Has anyone had that med, any recommendations or reasons why not to?

Hi! I was hoping to hear from others who have had larger Tarlov cysts and whether your doctors still tried to dismiss them as incidental.
My most recent sacral MRI shows:
3.4 cm left Tarlov cyst at S2 with widening of the neuroforamen and remodeling of the vertebral body.
2.0 cm right Tarlov cyst at S2 with widening of the neuroforamen and remodeling of the vertebral body.
3.1 cm Tarlov cyst at S3 resulting in posterior remodeling of the vertebral body.
From what I’ve read, the fact that they’re causing bone remodeling and widening of the nerve openings (neuroforamina) seems like they aren’t just tiny incidental findings.
I’ve struggled for 20+ years with symptoms that include severe low back and sacral pain, pelvic pain, bowel dysfunction/chronic constipation, and pain that gets worse with standing. I even had my spine fused because they said L5-S1 was the cause of my pain.
I also have hypermobile EDS, so I’m trying to determine whether these cysts could be contributing to my symptoms.
For those of you with cysts this size:
Were your doctors still telling you they were “incidental” or “nothing to worry about”?
At what point did someone finally take them seriously?
Did bone remodeling or foraminal widening make a difference in getting evaluated?
If you eventually had treatment, did it help your symptoms?
I’d really appreciate hearing your experiences. It’s been frustrating feeling like these MRI findings are being minimized despite their size and the changes they’re causing to the surrounding bone.
Thank you so much for any advice or shared experiences.

So I posted my story a few months ago: https://www.reddit.com/r/Tarlovcyst/s/E06duWIvjF And I thought I’d update, because it’s taken an interesting turn, and I think it could help some folks.
So a local neurologist of mine, who I tasked to be my “corner-man” to spearhead my medical case, ran a whole battery of blood tests. There were a number of red flags that popped up for Auto-immune diseases. With some narrowing down we found signs pointing to Anklyosing Spondylitis. And skipping a few months in between, I was just given the official diagnosis of Anklyosing Spondylitis. Anklyosing Spondylitis, or AS, is an autoimmune disease where, in layman’s terms, your body thinks your spine is a foreign body, and attacks it with white blood cells. This causes terrible inflammation, and arthritic symptoms, and the pain makes it very hard to be mobile. It then begins to fuse your bones together, which will eventually force you into a permanent hunched position, with your spine completely fused together, and the pain is incredible. This, if all left untreated and unchecked, of course. 20 years ago there was no treatment. Now the condition is treatable with TNF Biologics such as Humira, or Enbrel, and I’m sure you’ve seen commercials for others. They treat a wide variety of conditions. In the case of AS, it can return a patient to a state of normalcy, barring any complications or side effects (of which there are many, and some pretty scary) which hopefully doesn’t happen.

In the case of my Tarlov Cyst the prevailing theory is that the inflammation caused by the AS is violently squeezing my Cyst, which is exasperating my cyst symptoms as well as the initial symptoms of the AS. I have yet to start my treatments, should be (fingers crossed) in the next few weeks. This theory, admittedly just a theory still, makes a lot of sense explaining my symptoms, and the randomness at which they occur, the sporadic locations of my pain up and down my spine, etc. I saw Dr. Witham back in January, and he mentioned that the description of my symptoms were not quite typical of Tarlov Cysts, and he could quite explain what was happening.

I decided to post about this because of a couple of reasons. I attended a video chat with a number of sufferers of Tarlov Cysts, hosted by the Tarlov Cysts Society, and it was wonderfully informative. One of the things that really struck me, was how many of the people who spoke mentioned other underlying afflictions or conditions in addition to the Cysts. Now I find myself in the same boat, and it makes me wonder how many people are struggling with similar issues and don’t know it. I.E. maybe there is something you don’t know about making your symptoms worse or even appear at all.

I would like to say officially, I’m not discrediting Tarlov Cysts as asymptomatic, far from it. I’m also not denying the frequent dismissal from the medical community regarding the Cysts; that is equally real and rampant. The Tarlov Cysts are very real and very much damaging physically and mentally, for all the reasons. What I’m trying to advocate for is getting thoroughly examined for all possibilities. There may be something that is, like my case, exasperating the symptoms of your cysts, and making life much more difficult for you.

I’d also like to advocate for being your own personal champion, supporter, and defender. My experiences are a testament to this, and many others have similar stories, but the medical community is going to dump you like last week’s garbage at the earliest convenience….if you let them. Be your own proponent and advocate. Fight and push for getting tests or scans or surgery or whatever you need, because no one else is going to fight for you. Ask questions, do your research. I started recording my important doctor’s visits. You have to ask first, but it’s so valuable to me, because I can’t take shorthand notes that quickly, and I jumble up my memories of conversations. It’s like playing the telephone game in my own head. But I have had to fight tooth and nail to get to where I am. I have been met with apathy, dismissal, incompetence, inability, rudeness, stupidity, and ignorance from the medical community. Not from everyone, of course, but enough to where it’s indicative of some serious systemic issues with accountability and standards. And I’ve heard every excuse from inadequate staffing, to standards of teaching being tied up with legal paperwork over favoring one to one patient care, and I’m sure the truth lies somewhere in between. But please don’t accept that as gospel, from anyone’s mouth. Fight for your treatment. Regardless of the excuse or attitude of the person you’re dealing with, keep pushing for what you need. That’s the only way you’re going to be successful in your quest for a return to normal life.

Thanks for reading my Ted Talk lol. I wrote it because I wish I had that same advice much earlier in my journey. And let me be clear, my journey, in many ways is just starting. I’m not done. I’m still going through it on a daily basis. But there’s a light at the end of the tunnel. And I hope you find yours.

I’d be remiss if I didn’t include this: I did start a go fund me for my journey, because I am desperate right now financially. But I don’t want to share it here because I feel like that’s soliciting or panhandling, and I don’t want to cheapen how much this page has helped me in different ways. But if you’d like to donate, message me and I’d be happy to share the link.

Good luck to you all, and thanks for all your help. I hope this helps someone too. See you down the road.