A lot of doctors, including neurosurgeons don't know anything about cluneal nerves. I am due surgery in 2 weeks for what appears to be back mice on my left iliac crest. My theory is these are pressing on cluneal nerves. It has been 8 years of serious pain, many many specialist visits, injections, radio-frequency rhizotomy's and I diagnosed myself because no one would listen. I had one neurosurgeon state it was in my head that I could feel lumps. Another doctor said it was bone. Back mice are lipomas and are very clearly not bone! So after a few months of steroid injections having found a pain doctor that knew about them, though with little relief, I found a surgeon that will take them out. Hopefully it will ease the pain and I can have some normality. It appears that most doctors can only see the spine. If that is fine then surely there is no pain. One flare up I was in the ER on morphine and used a walker for 2 weeks. I was 42 at the time, as active and fit as I coukd be for someone with back issues.
You hit the nail on the head. I hope they got it out for you. After removing my back mouse ( March of 2023) on my left lower back side I have not had another attack of pain so bad I could not walk and was wheel chair bound. Neurosurgeons and most back pain management are useless in assessing this easy solution. They all want to inject the spine with steroids. I have had this debilitating issue for 14 years and had to diagnose myself finally. The neurosurgeon would not even do the surgery and dismissed me for not having a second spine surgery instead, he referred me to a run of the mill general surgeon. he removed a 1/4 lb lipoma over the superior cluneal nerve. Now I have the beginnings of a right side mouse that is aggravating right lower back pain and groin pain on the right side. It is not the size that the left was but it is starting.
@@terrythomas8109I had to diagnosed myself as well. The problem is that the doctors only rely on technology and they don’t touch, palpate,poke prod and really feel the body to understand the pain.
Wonderful insight from a sufferers persective thank you. I seem still to be unable to find anyone who describes my issue. I have no trigger points and the bilateral burning area of my skin gets worse when in contact with a seat/chair or if driving, its on the upper area of my buttocks but around 3 inches below the iliac crest, it was slight but since doing some stretches it has gotten worse though is sometimes gone when I awake, but after sitting for a short while will return. Have you ever heard of this Dr Terkawi?
Thank you for your comment. I am sorry I cannot provide any consultation outside my clinic at Stanford pain medicine. If you are close by you can ask your PCP to refer you and the clinic will review the referral. Thank you for your understanding.
@@tracykeelan8534 Mine is higher up at the superior cluneal nerve position. The NHS neurology team here in England have got back to me saying they have never treated anyone with my symptoms lmao they are just the worst.
Hey Dr Terkawi, would it still be Cluneal Nerve if its main pain is 6cm from illiac crest, and around 11cm from centre of spine? Please would really appreciate help. Thanks
Thank you so much. I'm a patient trying to understand the pain I have at the left iliac crest radiating down. this helped me so much!
You are welcome. I am glad this was helpful.
It is a great lecture thanks for your big effort
You are welcome!
A lot of doctors, including neurosurgeons don't know anything about cluneal nerves. I am due surgery in 2 weeks for what appears to be back mice on my left iliac crest. My theory is these are pressing on cluneal nerves. It has been 8 years of serious pain, many many specialist visits, injections, radio-frequency rhizotomy's and I diagnosed myself because no one would listen. I had one neurosurgeon state it was in my head that I could feel lumps. Another doctor said it was bone. Back mice are lipomas and are very clearly not bone! So after a few months of steroid injections having found a pain doctor that knew about them, though with little relief, I found a surgeon that will take them out. Hopefully it will ease the pain and I can have some normality. It appears that most doctors can only see the spine. If that is fine then surely there is no pain. One flare up I was in the ER on morphine and used a walker for 2 weeks. I was 42 at the time, as active and fit as I coukd be for someone with back issues.
You hit the nail on the head. I hope they got it out for you. After removing my back mouse ( March of 2023) on my left lower back side I have not had another attack of pain so bad I could not walk and was wheel chair bound. Neurosurgeons and most back pain management are useless in assessing this easy solution. They all want to inject the spine with steroids. I have had this debilitating issue for 14 years and had to diagnose myself finally. The neurosurgeon would not even do the surgery and dismissed me for not having a second spine surgery instead, he referred me to a run of the mill general surgeon. he removed a 1/4 lb lipoma over the superior cluneal nerve.
Now I have the beginnings of a right side mouse that is aggravating right lower back pain and groin pain on the right side. It is not the size that the left was but it is starting.
On this video minute 19:10 I talk about "back mouse". I am glad this video was helpful. Hopefully you will feel better soon.
On this video minute 19:10 I talk about "back mouse". I am glad this video was helpful. Hopefully you will feel better soon.
@@terrythomas8109I had to diagnosed myself as well. The problem is that the doctors only rely on technology and they don’t touch, palpate,poke prod and really feel the body to understand the pain.
Did the removal of your lipoma resolve your pain
That was excellent, thank you doctor Terkawi 👏🏿👏🏿
You are welcome
Thanks great presentation
Glad it was helpful!
Thank you so much for excellent lecture
You are most welcome
Muy bueno y claro!
Thank you
Could you please do something for middle cluneal neuropathy and entrapment?
It is more rare and kind of similar. I did cover it on one of my slides.
I have this condition😢 it’s very very painful it feels like a gunshot wound!
I am sorry for your pain. Happy to help you if you can come to my clinic in Stanford University.
Wonderful insight from a sufferers persective thank you.
I seem still to be unable to find anyone who describes my issue. I have no trigger points and the bilateral burning area of my skin gets worse when in contact with a seat/chair or if driving, its on the upper area of my buttocks but around 3 inches below the iliac crest, it was slight but since doing some stretches it has gotten worse though is sometimes gone when I awake, but after sitting for a short while will return.
Have you ever heard of this Dr Terkawi?
Thank you for your comment. I am sorry I cannot provide any consultation outside my clinic at Stanford pain medicine. If you are close by you can ask your PCP to refer you and the clinic will review the referral. Thank you for your understanding.
@@dr.terkawi Unfortunately I am in England but thank you for answering Dr 🙂
Have you followed up to see if it's piriformis syndrome
@@tracykeelan8534 Mine is higher up at the superior cluneal nerve position. The NHS neurology team here in England have got back to me saying they have never treated anyone with my symptoms lmao they are just the worst.
👏👏👏👏
Hey Dr Terkawi, would it still be Cluneal Nerve if its main pain is 6cm from illiac crest, and around 11cm from centre of spine? Please would really appreciate help.
Thanks
Hard to tell without proper history and physical examination. The course of those nerves are variable.
Is cluneal nerve Rfa is covered currently by Medicare ?
I am not sure
The point of pain is similar to si joint pain?
slightly higher and outer
7:21
I have tebical this case can i contact with you Dr terkawi
Please contact Stanford pain medicine.