u/Glitterbats11

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!

I’m very interested in trying IPL for dry eyes/ ocular rosacea.

IPL has been an absolute game changer for managing rosacea on my face over the years, but dry eye symptoms persist since the eyes aren’t normally included.

Would love any recommendations for specific practices or hear about any really good experiences!

Bonus points if the office can perform a facial IPL in addition to the eye treatment, although I’m assuming that’s rare.

Thanks! 😊

I get a very conservative amount of Dysport in the eye area and between my brows 2x per year( I think it’s maybe 40 units?).

My previous injector was Ross at NextHealth but he’s moved elsewhere.

I would like to find a new provider who is very experienced + knowledgeable and who is a “skin nerd”( like me) and would rather go to a cosmetic dermatologists office or a higher end facility, than somewhere just because it’s affordable or because the injector is “nice”.

I’ve been through allot of medical trauma( unrelated to dysport), and partly get the dysport due to nerve pain around my eye, so I absolutely want an injector who knows about what can go wrong and isn’t overly casual about injecting someone’s eye area.

Thanks ✨💕

I had a consult with a Dr Moriarty at UCLA who treats these issues and he said that after reviewing my imaging, he doesn’t even think I have MT. He said there is some nutcracker compression, but it’s only “40%” which doesn’t meet with 50% or more threshold for surgery.

MIP’s diagnosed me with MT and possible nutcracker earlier this year, and have never said I don’t need some type of intervention.

I’m wondering if MIP’s just has a lower threshold for surgery maybe especially when patients are highly sympathetic?

Just was a bit odd to be told I don’t have MT.

Honestly, would love to not need these surgeries but also not sure that my other diagnosis’s explain my left leg pain, urinary frequency etc.

Thanks in advance for any feedback from anyone who’s experienced similar!

Wondering if anyone here has experienced allot of chronic pulling and tension through the spine and limbs as a result of a CSF leak?

Ps. I also have crushing disabling fatigue, inability to be upright, noise sensitivity and many other symptoms.

Already diagnosed with some vascular compressions( one of which I’ve had surgery for) but I’m trying to understand if I am leaking, have TC or something else.

Thanks!

Wondering if anyone here has experienced allot of chronic pulling and tension through the spine and limbs as a result of a CSF leak?

Ps. I also have crushing disabling fatigue, inability to be upright, noise sensitivity and many other symptoms.

Already diagnosed with some vascular compressions( one of which I’ve had surgery for) but I’m trying to understand if I am leaking, have TC or something else.

Thanks!

Hi! I am EXTREMELY claustrophobic and my Dr wants me to get an MRV to take a deeper look at my pelvic congestion situation.

I have already been diagnosed with May Thurner( and nutcracker anatomy) on CTV but I've been told that imaging can't sufficiently evaluate "how bad it is".

My question is, at 5ft 4 inches with feet first positioning, will my head be outside the machine? Is there a particular machine that I can track down that will allow my head( or at least eyes to be outside the machine)?

Things like sedation will not work if my head has to be inside. Other suggestions that people with very mild claustrophobia tend to make don't work for me(i.e. mirror glasses, towel over the eyes, listening to music...).

If my head/ eyes are out it will be a non issue, I will be able to get this imaging done asap and it won't be a traumatic experience. If not, I may need to arrange for general anesthesia and I would strongly prefer to avoid having to do that if at all possible.

Thank you very much.

P.S. I'm in Southern California if that's helpful to know and am willing to make a longer commute/drive in order to complete imagine in a less claustrophobic machine.

I have a suspected connective tissue disorder and am diagnosed with CCI, May Thurner, and jugular compression but I need to rule tethered cord in or out as well.

Due to severe claustrophobia, I have honestly been procrastinating a little on the TC imaging.

My question is, if all that's needed is a lumbar MRI, will my head or eyes be sticking out of the machine? I don't care if my body is enclosed as long as my head is out and if so, I won't hesitate to get it done asap.

Also, I'd like to get the best imaging for diagnosis done all in one trip( am currently mostly bed bound) so would love to know if more than Lumbar MRI is needed or the exact type?

I'm 5ft 4 inches if helpful.

P.s. Regular sedation will not work for me if my heads inside the machine( If not, I will need to be under general anesthesia). I will request feet first positioning but I still am unclear if my head will be enclosed.

Thanks!

Even with a referral for a blind blood patch from my out of state Dr and after several weeks of calling around like it’s a full time job( UCI, USC, Cedars, Hoag, UCLA, pain drs in private practice, etc..) I still can’t seem to get something as simple as a single blind blood patch done here( for one reason or another) in the near to immediate future.

Some people have recommended Cedars but they can’t see me until well into the fall. It’s also important to remember that they don’t accept every patient( even some who are leaking) + are basically inundated + they also require patients do extensive imaging prior to even offering a “blind” patch.

I know I’ve posted recently about this before, but I mean.. someone in one of these groups must have received a stat blind blood patch in So Cal, right?!

It’s getting so ridiculous that I may need to fly to Colorado just to try an epidural blood patch!

Since spontaneous leaks are not remotely uncommon in people with any of the connective tissue disorders or even people post trauma.

I’m open to trying PRP, blood patch or even revisiting fascial counterstrain with any Dr or practitioner that knows what they are doing( has treated similar patients).

Thanks.

Even with a referral for a blind blood patch from my out of state Dr and after several weeks of calling around like it’s a full time job( UCI, USC, Cedars, Hoag, UCLA, pain drs in private practice, etc..) I still can’t seem to get something as simple as a single blind blood patch done here( for one reason or another) in the near to immediate future.

Some people have recommended Cedars but they can’t see me until well into the fall. It’s also important to remember that they don’t accept every patient( even some who are leaking) + are basically inundated + they also require patients do extensive imaging prior to even offering a “blind” patch.

I know I’ve posted recently about this before, but I mean.. someone in one of these groups must have received a stat blind blood patch in So Cal, right?!

It’s getting so ridiculous that I may need to fly to Colorado just to try an epidural blood patch!

Since spontaneous leaks are not remotely uncommon in people with any of the connective tissue disorders or even people post trauma.

I’m open to trying PRP, blood patch or even revisiting fascial counterstrain with any Dr or practitioner that knows what they are doing( has treated similar patients).

Thanks.

*Not a post lumbar puncture procedure patch but a blood patch for a spontaneous leak caused by connective tissue disorder.

I genuinely do not know if I have a more typical longstanding leak or a fistula, but trying a blood patch for diagnostic purposes seems like the first step. One of my most trusted Drs suspects I am leaking( unfortunately he’s out of state though).

Cedars can’t even offer me a consult until the fall. I’ve been housebound for at-least a few years.

Thanks for any helpful feedback!

My out of state surgeon gave me a referral for some blood patches( he suspects I have CSF leaks), and I’m at a loss about where I can get this procedure done in the immediate future.

I submitted to Cedars weeks ago and am waiting/ well aware that this is not going to be the fastest option as they require you re-do all imaging with them. UCLA seems like a bad option( I did try though). The top CSF leak Dr in San Diego has apparently closed his practice to new CSF leak patients.

Really want to go to a Dr/ practice that specializes in treating CSF leaks and patients with things like EDS/ hyper mobility who are leaking.

Open to suggestions/ truly can’t believe this care seems is apparently this hard to access in California.

Ps. Yes, I‘ve also tried posting in CSF leak groups.

If so, I’d love to hear if you had a good experience?

My surgeon in Colorado has given me a referral for a STAT epidural blood patch and I am about to fly back to LA. I need to get a blood patch asap and not months from now.

I'm open to LA, OC or anywhere else nearby.

*Note: I'm not seeking recommendations for Cedars Sinai CSF Leak department.

P.s. Would like to go to a facility/ practice that does lots of blood patches and treats people with EDS.

Thanks!

My surgeon in Colorado has given me a referral for a STAT epidural blood patch and I am about to fly back to LA. I need to get a blood patch asap and not months from now.

I'm open to LA, OC or anywhere else nearby.

*Note: I'm not seeking recommendations for Cedars Sinai CSF Leak department.

P.s. Would like to go to a facility/ practice that does lots of blood patches and treats people with EDS.

Thanks!