u/Glitterbats11

For context, I’ve been disabled by a combination of conditions for over a decade and a half so to complications of suspected connective tissue disorder.

During this entire time, I have NEVER received disability/ any compensation and have paid out of pocket for many of my medical expenses and have also paid allot to travel out of state multiple times for surgeries and diagnostics.

The algorithm send me an advertisement for something called “Atticus” yesterday, which left me wondering if are services out there that I may not be aware of. Also kind-of curious if anyone here recommends Atticus or a similar service.

I’m still severely disabled but working on getting better( now that I have more actionable diagnosis confirmed!). Currently have two out of state surgeries on the horizon as well.

Thanks in advance if anyone has any recommendations!

Would also be very curious to know what your worst symptoms were if you did not experience balance issues/ vertigo?

The reason it would be so great to hear from people who are post op is due to the fact that it would help clarify what was/ wasn't actually being caused by the SSCD( also sensitive to the fact that many of us have other structural issues/ diagnoses that may also be causing symptoms).

Thanks.
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I recently had SSCD confirmed and have a history of severe sound sensitivity. I also have suspected long term CSF leak, dysautonomia/ fatigue, MCAS, some vascular compressions, etc, so I’m not assuming SSCD explains everything. 🤷‍♀️

My question is whether anyone’s SSCD, especially after years of traumatic sound exposure and disrupted sleep seemed to contribute to a broader crash in functioning/ PEM, inability to tolerate upright activity/exercise intolerance, driving, or basic functioning?

Also curious, you had repair, did it improve anything beyond sound sensitivity?

I’m currently housebound/ am barely functioning as it is so have to be smart and prioritize the right thing since my energy is so finite.

Thanks!

Would sensation of feeling like you have a super tight fascia-onesie on 24/7, be more associated with tethered or occult tethered cord?

Or might it be caused by long term CSF leak, something negatively impacting vagus nerve or other?

Ps. I have a neuro EDS type situation happening.

Would sensation of feeling like you have a super tight fascia-onesie on 24/7, be more associated with tethered or occult tethered cord?

Or might it be caused by long term CSF leak, something negatively impacting vagus nerve or other?

I’m very curious what symptoms others who have been leaking a long time experience( especially from a spontaneous spinal leak)?

I have suspected long standing spinal leak, but don’t have positional headache or pain( my spine in thoracic and other areas, skull base, facial and other pains are all constant/ not positional).

However, I “crash” after a few hours of being upright and have to go horizontal due to severe fatigue, tachycardia, and just general inability to be upright for the majority of the day. Currently between house/bedbound.

Just would like to hear what symptoms others experienced with long standing leak because most Drs seem very hung up of the positional headache being almost like a requirement.

Thanks!

I’m very curious what symptoms others who have been leaking a long time experience( especially from a spontaneous spinal leak)?

I have suspected long standing spinal leak, but don’t have positional headache or pain( my spine in thoracic and other areas, skull base, facial and other pains are all constant/ not positional).

However, I “crash” after a few hours of being upright and have to go horizontal due to severe fatigue, tachycardia, and just general inability to be upright for the majority of the day.

Just would like to hear what symptoms others experienced with long standing leak because most Drs seem very hung up of the positional headache being almost like a requirement.

Thanks!

I need to relocate to another state in order to try a series of blood patches and I’m trying to decide if I need to avoid rentals that have stair cases?

Have never had a blood patch before but have heard that bed rest is best afterwards.

Thanks!

*Post edited for this group.

I am relocating to Colorado for medical reasons and seeking very quiet mid term( or possibly longer) furnished housing within a reasonable commute to Denver( maybe an hour drive or less with flexibility) starting in September( flexible on start date).

Due to a medical issue( SSCD), I have noise sensitivity and since I’ll be coming to CO specifically for related medical treatment, it’s important that home is a place where I can actually rest my nervous system following treatments/ procedures.

I am entirely moving to heal and undergo some treatments at St Luke’s that require allot of rest afterwards, so certainly do not need immediate access to the excitement of a city.

As a very quiet neighbor myself, living in areas where others value the same level of peace and calm would be ideal.

Price range would ideally be under $3300 monthly but could go up to $4000 for the right place.

Strong preference for new/newer construction and rentals without shared walls.

Because I’m currently disabled and don’t drive much, I do need to still live in a place where I can hire Lyft’s or Uber’s to get to Drs appointments and receive Instacart or other grocery delivery.

Being in or in proximity to nature would quite LITERALLY be healing.

Anyway, I know what I’m trying to find is very specific but because most of my criteria aren’t preferences, but rather medical requirements, I have to at least try.

I’m open to any specific area suggestions or any other constructive advice and DM is open.

P.s. Evergreen looks gorgeous 😍. Just haven’t found the right fit there in my price range so far.

Thanks for reading!

Unfortunately, I have to temporarily relocate to another state for medical reasons and have to bring my cat with me.

My 11 year old 11 LB boi is shy with strangers, hates loud noises and screams in the car so this is likely going to be very stressful for him.

I’m looking for a backpack that has a dark area in the bottom where he can fully hide but one that also has some airflow( he’s a long haired black cat).

Planning to fly Delta because they seem to have the best pet policy( some of the options on Chewy/ online seem like they are too large for Delta).

Backpack is preferable because unevenly distributed weight is much harder for me to transport. May seem odd but I’m hyper mobile, so carrying weight only on one side of my body honestly feels like it injures me sometimes.

I also have a gabapentin Rx for him and considering rescue remedy but trying to get backpack sorted in the meantime.

Also open to any other suggestions regarding flying with a cat for first time.

Thankyou! 🖤

Can anyone recommend company/ service to help with transporting my belongings from LA to Colorado?

I'm currently mostly housebound so will be flying and will need to ship my car and have my belongings moved separately.

I don't have much stuff/ no large furniture and will be moving from one furnished mid term rental into another.
Don't even have a full truck load of stuff but do have fragile items which require extra care.

Thanks for any helpful feedback!

Can anyone recommend company/ service to help with transporting my belongings from LA to Colorado?

I’m currently mostly housebound so will be flying and will need to ship my car and have my belongings moved separately.

I don’t have much stuff/ no large furniture and will be moving from one furnished mid term rental into another.

Don’t even have a full truck load of stuff but do have fragile items which require extra care.

Thanks for any helpful feedback!

I am relocating to Colorado for medical reasons and seeking very quiet mid term( or possibly longer) furnished housing within a reasonable commute to Denver( maybe an hour drive or less with flexibility) starting in September( flexible on start date).

Due to a medical issue( SSCD), I have noise sensitivity and since I’ll be coming to CO specifically for related medical treatment, it’s important that home is a place where I can actually rest my nervous system following treatments/ procedures.

About me:
*I’m extremely quiet, conscientious, respectfully maintain spaces, good communicator, very clean( have been practicing mold avoidance for years) and don’t create noise disturbances for others. Most neighbors don’t even know I’m there 😅. I have a 5 star rating on furnished finder and Airbnb and have had multiple extended stays on both platforms.

*Not coming to CO to party or socialize, and am entirely moving to heal and undergo some treatments at St Luke’s that require allot of rest afterwards.

*Will literally be meditating, reading resting, doing remote work or at a Drs appointment the entire time. 😹

*I only use natural cleaning/ home products.

*Looking at staying in CO between 2-6 months( flexible but wasn’t planning on permanent relocation).

Desired rental:

*New construction( or extensive renovation) with no history of water damage.

*Mid-term, month to month furnished or partially furnished preferred.

*Under $4000 per month.

*Dishwasher and some semblance of a kitchen.

*Washer( +preferably dryer).

*One well behaved indoor cat ok.

*Most important: No shared walls/ loud dogs nearby/ kids screaming( love kids but noise sensitivity doesn’t discriminate)/ ongoing nearby construction. Distance from other properties or being on a larger property would be ideal. Nature noises are welcome.

*Ability to receive Instacart, deliveries, Lyft rides.

I realize what I’m looking for is very specific, but a peaceful, quiet and clean rental is currently a medical requirement.

Preferred but not required:
Cannot understate how beyond WONDERFUL it would be to either be in or in close proximity to any nature. 😍

*Open to any areas that are within a reasonable commute to Denver.

Thankyou soooo much for reading or for any suggestions regarding areas or even specific rentals! Thanks 😊

P.s. If any realtors can help, I’m also open to that. Just looking to rent/ not purchase right now.

I’ve had 3 nasal surgeries.

A) First one was following an accident that broke my nose.

B) Second surgery was 10 years later because my septum stated to collapse and I was having breathing issues. Unfortunately I was completely botched by the revision surgeon= he removed allot of my nose/ did things I didn’t ask for/ instead of just fixing what I needed( straightening and breathing, etc).

C) 3rd surgery happened 3 years ago and 9 years after the surgery that botched me. In this second revision, the doctor fixed my breathing, gave me back somewhat of a bridge, made my nose smoother and gave me a better nasal tip. He couldn’t give me back all the length and projection I had naturally or a hanging columella but he did make my nose more functional and symmetrical.

The 3rd surgery was complex and involved rib, and the goal was to never have another nasal surgery.

Unfortunately, since the natural length, projection and overall size and character of my original nose could not be restored, the current nose doesn’t fit my face as well. I have wondered if atleast some of what’s throwing things off is that I have a significantly longer philtrum now. Having a nose that is slightly too short and too small just throws off my face.

I know I looked better with my original nose( or the one after the first surgery), but for obvious reasons, I’m avoiding any more nasal surgery as that’s unlikely to help.

Has anyone here found things that DO help? Or helped you look more like yourself after loosing some of your identify/ beauty/ facial balance due to multiple surgeries/ being botched?

I recently tried a “lip flip” just to see if having a slightly shorter looking philtrum might help( it’s not in full effect yet but I think it also only shortens philtrum by 1mm).

Other things that I’ve considered by haven’t tried include: Lip filler, lip blushing( although apparently it can’t be done outside the vermilion border), wearing a fake septum piercing( I used to have a real one but pretty sure I don’t want to pierce my thrice surgeried nose), or an actual lip lift( but am concerned it would put tension on/ change my nose).

Have never heard of a procedure just to restore a hanging columella or a lip lift that doesn’t involve an outer scar/ wouldn’t effect nose at all but I’ve wondered about semi-imaginary procedures like that as well.

I just a lumbar MRI to evaluate for TC.
Is the test usually supposed to be done in a supine and prone position?

I was supine for the entire scan( it lasted approx 7 minutes).

This imaging is going to be forwarded on to a TC specialist for review.

I just a lumbar MRI to evaluate for TC.

Is the test usually supposed to be done in a supine and prone position?

I was supine for the entire scan( it lasted approx 7 minutes).

This imaging is going to be forwarded on to a TC specialist for review.

I’m trying to decide if I should pursue blood patches first, or if the SSCD might be the main issue.

My skull base surgeon( performed jugular decompression on my left) earlier this year, pointed out that it looked like I had SSCD on my imaging while receiving my head/ neck CT’s.

Right now leak is suspected and I am trying to arrange for a formal consult for the SSCD, but I want to make sure I’m prioritizing the right thing.

My noise sensitivity is so extreme that I have to wear noise protection constantly, and any unpredictable noises can give me tachycardia( to the point where I am actually concerned about my heart) and trigger fight/flight. It would not be an exaggeration to say that I feel terrorized if I have a noisy neighbor, etc.

Other worst symptoms are orthostatic intolerance, excercise intolerance, severe fatigue with PEM, non-restorative sleep which all make me house/ bed bound. Also constantly non positional skull base pain, left facial pain, lots of tension through the body- inability to truly downshift coupled with crushing fatigue.

I do have brain sag on imaging and some other findings indicate leak.

I’ve had a very hard time finding a Dr to perform a high volume blind blood patch for suspected CSF leak in So Cal, even though my surgeon in Colorado gave me a referral for blood patches over a month ago( and would be able to get one asap if I was in Colorado but unfortunately I returned to CA).

So far, I’ve consulted several Drs that can provide normal epidural blood patches but all seem out of their depth when it comes to treating patients with connective tissue issues/ this type of leak.

Just trying to decide if meeting with this Dr is even a good use of energy/ worth the crash? Or if I just need to focus on trying to get back to Denver.

Ps. I’ve already applied to leak centers like Cedars and they cannot or will not get me in until the fall. I would like to try some blood patches before then to see if I respond one way or the other.

Thanks in advance to anyone who’s familiar with this Dr or knowledgeable about these things!