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Thu, Mar 14 12:17pm · Has anyone been diagnosed with Central Sensitization? in Brain & Nervous System

I concur with both of you. If diagnosed correctly you can get better. If just given a dx bc they don’t know what it is, then you’re kinda screwed. I do my own PRC treatment (I have an idea of what that is, I haven’t been), it helps with coping, but doesn’t do much for all my true physiological problems and diagnoses. Glad I have the correct dx’s now. I do believe that C.S. is the correct dx for certain people with certain pain conditions, but to use it off label is basically like saying any neurological problem is C.S.

Wed, Mar 13 5:36pm · Pineal Cyst in Brain & Nervous System

Dr. Dong Kim.

Wed, Mar 13 5:35pm · Pineal Cyst in Brain & Nervous System

I don’t think my last post I tried went through so I’ll try again. As stated above/below or however it displays, make sure Vestibular and spinal and all other causes of your symptoms have been ruled out. If you are 100% completely healthy and have a pineal cyst >1.4 cm(?) it can cause symptoms, but usually has to be fairly large to be the root cause. The treatment is brain surgery and that causes a traumatic brain injury. So if everything has been ruled out and have tried all forms of conservative treatment (PT, acupuncture, diet, normalizing deficiencies (vit D, B and magnesium to name a few that can cause symptoms), exercise (directed by an MD or PT (for whatever other probs you have) and the other forms of calming the nervous system down of decreasing stress, depression and anxiety by doing mindfulness regularly, meditation regularly, possibly tai chi or yoga if able and getting good at breathing exercises and of course regulating sleep as the main function of the pineal gland is circadian rhythm and medicines to address the dysfunctions, then at that point, surgery may be right for you.
For the most part they are right in that it doesn’t usually cause these symptoms, but if you get to Paranaud syndrome then at that point I believe they’d consider surgery. Otherwise, the after effects of brain surgery are all the same symptoms. Just education is all I’m giving. It’s very scary to have these symptoms and in fortunately there are an infinite number of causes of these symptoms and so many diagnoses to rule out (some with treatment and cures and unfortunately, some like all of mine that don’t have treatment and cures).
Hope that helps. I think the doctors name is ‘king’ or something like that. I was on the pineal cyst FB support group briefly and they mentioned it. The surgery was successful for those who had 0 other health issues and the cyst was the only cause of the symptoms.

Wed, Mar 13 5:18pm · Pineal Cyst in Brain & Nervous System

Has all causes of Vestibular dysfunction and cervical spine issues been ruled out? Have you seen a PT or Vestibular PT to see if they can eliminate some of your symptoms? Some of those can be treated conservatively now. But you have to find a good therapist that does manual and Vestibular therapy where you live.

Sun, Mar 3 8:49pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Thank you for all that. And as for the pelvic PT, that’s kinda crappy if they only massaged. A true pelvic floor specialist does far more specialized care. They have a certificatation for the pelvic floor (I do not, I specialize primarily in orthopedics, manual therapy and hope to learn Vestibular this year). They should have assessed mobility of spine, pelvis, hips, SIJ, etc. Hope seeing a new PT helps!!
As for the inflammation-until the problem is corrected it sounds like low level chronic inflammation that needs to go away!

Sun, Mar 3 3:31pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Hi there, I do not have this problem, but I’m a PT and we have actually more people than you would think with this or very similar problem.
I did not read through prior feeds so this may have already been suggested, but see if you can find a pelvic floor specialist (PT) or one that knows how to do nerve glides for this region as it may not be just the pudendal nerve as there are many nerves off the lumbosacral plexus and if the fascia is tight surrounding it (yes-psoas definitely could be clamping down causing symptoms) then those muscles and tissues need to be released.
If she has been sitting funny bc of it she likely has some thoracic and lumbar alignment issues now and may have a ‘functional’ scoliosis developing (functional meaning she wasn’t born with it, but bc of postural dysfunction her muscles have pulled her spine into various curvatures that is correctable with both manual therapy and specific neuromuscular re-education). These postural faults could also be causing or feeding into the problem even if it gives temporary relief sitting like that.
The pelvis and sacroiliac joint need to be assessed and corrected if out of alignment.
So basics that any good manual PT (one that specializes in manual therapy) can do is correct lumbar facet dysfunction followed by pelvic dysfunction, followed by releasing the tissue throughout that whole region as the fascial system overlaps and even her abdominal fascia up to her ribs I bet is tight as well as in her low back, pelvis and down to both knees.
Lastly, I’d work on checking nerves you can glide (sciatic, femoral and obturator) and do some nerve glides, teach how to perform at home and if a pelvic floor PT-prob knows some fancy ones that are more specific to that area.
After all that correction manually, then comes core stabilization of the transverse abdominis, pelvic floor and multifidi-basics first (Sahrmann) and then work on correcting posture (schroth-seated and sidelying).
Sorry for all that, but just wanted to help. Feel free to copy and paste and print all that out if you go to PT they’ll know what to do (if you find a good one). If they just use modalities (Ultrasound, estim, ice/heat, ionto) and exercise alone, you aren’t going to likely fix the problem. IMO. She should feel immediate relief in the first 3-4 visits-if not, may need to shop around. Look for (OCS, COMT, FAAOMPT, etc) for initials after their PT, DPT. Good luck

Wed, Feb 27 8:24pm · Pineal Cyst in Brain & Nervous System

If the cyst causes symptoms that require surgery, there are very few doctors that believe that these cysts can cause symptoms. There is one doctor in Texas that removes them and people have great success from what I’ve heard. It amazes me that people’s symptoms completely resolve with surgery.

Tue, Feb 26 9:26pm · Functional Neurological Disorder in Brain & Nervous System

@jubilee
That’s great to hear you’re doing better!
Neuroplasticity is important in every disorder/disease. It gave me hope I could improve, but unfortunately for me until they find a cure, I do as much as I can conservatively and with whatever medicine they recommend as we are kind of experimenting.
Good luck to those of you with FND and FMD.
FB support group are very helpful! I wish there were in person ME/CFS groups, but we are too sick and weak to meet in person. We have a support phone group once a week and discuss 3 topics of choice and then the research update at the end of the phone call. Definitely recommend support groups!