[paperbag]

I fear I have meralgia paresthetica. I am wondering if anyone still reads this forum?
The pain started just last month, when I tried to do yoga. It is the worst pain I have ever felt. I am terrified of this becoming permanent. I am already on disability for other reasons. I am so scared right now.

I have already been through hell with misdiagnoses from doctors, and it's only been 1 month since I first developed this pain.

If anyone is still around, please post a reply. I'd love to speak with someone who also has meralgia paresthetica.

[Hopeless]

Originally Posted by paperbag

I fear I have meralgia paresthetica. I am wondering if anyone still reads this forum?
The pain started just last month, when I tried to do yoga. It is the worst pain I have ever felt. I am terrified of this becoming permanent. I am already on disability for other reasons. I am so scared right now.

I have already been through hell with misdiagnoses from doctors, and it's only been 1 month since I first developed this pain.

If anyone is still around, please post a reply. I'd love to speak with someone who also has meralgia paresthetica.

Hi paperbag,

There are a few of us still around but many MP sufferers come and go because for many it is a short term problem and they recover. That is the good news. I guess a lot depends upon the "cause" of the MP. MIne was due to damage of the LFCN during a surgical procedure and I have been dealing with it for about 35 years. If you wish to talk more about it, I would invite any questions you may have. A lot of us know the misery of being undiagnosed, mis-diagnosed, etc. on many neuro conditions so we can relate.

I am here for you any time you want to talk.

Hopeless

[paperbag]

Hi Hopeless,

Would it be ok with you if we exchanged emails? I would really like to have someone to talk to about MP. I am suffering a lot right now, because all of the doctors are on vacation due to the christmas/new year's holiday period. I would really appreciate advice from someone who has been through this.
If that's not ok, I can just keep posting to you here.

Originally Posted by Hopeless

Hi paperbag,

There are a few of us still around but many MP sufferers come and go because for many it is a short term problem and they recover. That is the good news. I guess a lot depends upon the "cause" of the MP. MIne was due to damage of the LFCN during a surgical procedure and I have been dealing with it for about 35 years. If you wish to talk more about it, I would invite any questions you may have. A lot of us know the misery of being undiagnosed, mis-diagnosed, etc. on many neuro conditions so we can relate.

I am here for you any time you want to talk.

Hopeless

[Hopeless]

Originally Posted by paperbag

Hi Hopeless,

Would it be ok with you if we exchanged emails? I would really like to have someone to talk to about MP. I am suffering a lot right now, because all of the doctors are on vacation due to the christmas/new year's holiday period. I would really appreciate advice from someone who has been through this.
If that's not ok, I can just keep posting to you here.

Any form of communication is fine with me. I sent you an email.

[DebbieK]

Originally Posted by Hopeless

Any form of communication is fine with me. I sent you an email.

Hello Hopeless and or other sufferers:
My 24 year old daughter has had a numbness tingling in her thigh since she was
8 years old.Into her teen years we tried over and over to get to the cause but it was not hurting and very off and on.Last year the pain started a nd so do sdf our search for help and a diagnosis.Went to as neurologist knew right away it was
M.P Glad to have a name for the condition but it's been a merry go round of nuerontin Lyric a Tegretol cortisone injection,pain patches and a nerve block in her lumbar region to try and reach the nerve that way. Neurologist says not a candidate for surgery as well as orthopaedic doctor say no point in surgery. Have read that in rare cases surgery can help. She is age 24 not over weight and not diabetic.SHe is so depressed from th he pain and feels defeated.please any help or adviCE.We feel alone and lost.Thank you, Debbie K

[WSprings]

Originally Posted by paperbag

I fear I have meralgia paresthetica. I am wondering if anyone still reads this forum?
The pain started just last month, when I tried to do yoga. It is the worst pain I have ever felt. I am terrified of this becoming permanent. I am already on disability for other reasons. I am so scared right now.

I have already been through hell with misdiagnoses from doctors, and it's only been 1 month since I first developed this pain.

If anyone is still around, please post a reply. I'd love to speak with someone who also has meralgia paresthetica.

WSprings

The best explanation is in Wikipedia.
My own experience of it started about 1 month ago. Few Doctors recognize it unless it is pointed out to them.
Do not where belts. The top of your hip must be free from any pressure. This does not cure it. but it certainly reduces the intensity. As I self diagnosed a short time ago, my hunt for permanent relief is just starting.
Hang in, if I find out anything significant, I'll let you know.

[Hopeless]

Originally Posted by DebbieK

Hello Hopeless and or other sufferers:
My 24 year old daughter has had a numbness tingling in her thigh since she was
8 years old.Into her teen years we tried over and over to get to the cause but it was not hurting and very off and on.Last year the pain started a nd so do sdf our search for help and a diagnosis.Went to as neurologist knew right away it was
M.P Glad to have a name for the condition but it's been a merry go round of nuerontin Lyric a Tegretol cortisone injection,pain patches and a nerve block in her lumbar region to try and reach the nerve that way. Neurologist says not a candidate for surgery as well as orthopaedic doctor say no point in surgery. Have read that in rare cases surgery can help. She is age 24 not over weight and not diabetic.SHe is so depressed from th he pain and feels defeated.please any help or adviCE.We feel alone and lost.Thank you, Debbie K

Hi Debbie K,

I am so sorry to hear what you and your daughter have been through in your quest to find answers. Yes, it is great to finally have a diagnosis and a name but you also need to find relief. I, too, began with it off and on, when I was in my twenties so I can certainly relate to what is going on in your daughter's life. (I am now in my sixties.) It took decades for me to get the "proper" diagnosis. As far as treatments once I finally got a diagnosis, I have been through the gambit. As far as surgery, I believe it should be a LAST resort. You mentioned various treatments attempted and I have a question regarding one of them. Exactly "where" was the cortisone injection done anatomically? Did they do an ultra-sound guided injection into the LFCN? There is also a procedure called radio-frequency ablation that can be done if injections into the LFCN do not help.

After many years of intermittent pain, my MP had progressed to constant pain at which time I was willing to try anything. In many cases, MP will resolve on its own as you have probably read in your research of the topic. But for the ones that it becomes a chronic lifelong problem, finding the right treatment is our only hope. It can become debilitating so I hope for your daughter's sake, she can find the proper help NOW.

Please keep us informed. We are here to listen and help in any way we can.

If other treatment modalities have not worked, she might want to consider having a direct nerve block into the LFCN. Good luck and looking forward to hearing from you again.

Hopeless

[DebbieK]

Thank you for the quick reply.My daughter had a cortisone injection into the nerve without an ultrasound.She had an ultra sound guided epidural block in the lumbar region at the base of the nerve last week. She felt the medication going into the nerve we had hoped it would work.Doctors seem unable to treat this condition.It is so frustrating.

Why is surgery discouraged? No one has told us why just that they won't.I have read online that it can help.Knowing what you know,now after living with M P many many years would you have considered surgery? Do you know of a specislist who has knowledge of
M P ? I have scoured the internet looking for answers.I found John Hopkins in Maryand and a DR Ducic in Wasington D.C.Any knowledge of these doctors? They are both very far from Indiana where we live. I just can't bear to see her suffer she is so young. Thank you for listening we are struggling so much with this horrific condition.As her mother I wish I could just take the pain and carry the burden for her. Debbie K

[paperbag]

Hi Debbie. I made the original post. I live in a suburb of Chicago. I don't know how far from Chicago you are?

I went through similar problems. I had an orthopedic surgeon inject kenalog into my groin, without ultrasound guidance. It did nothing. Without ultrasound, the doctor is just squirting liquid blindly, around a very small thing: a nerve. I got 0 relief.

The only thing that has worked for me, is an ultrasound guided steroid shot, not to the spinal nerve root, but in the hip/groin region where the nerve exits the pelvis.

What worked for me was to find a doctor called a Physical Medicine & Rehabilitation doctor, or PM&R doctor. You have to find one who does ultrasound-guided injections. I have found one at the local hospital I go to, and it's a lot closer than Washington, D.C.

I think the doctors might be scared to do surgery on your daughter if she is "too young". But I'm sure you know, we who suffer this pain don't care how old we are, we just want it gone. I would have gladly let someone cut my lateral femoral cutaneous nerve in half.

You haven't tried all the options yet, but that is not to say that the doctors you have seen seem to know what that is. I would say try to find a PM&R doctor who will do a steroid injection to the LFCN where it exits the pelvis. A steroid is an anti inflammatory, not a numbing agent. If your daughter's nerve is not inflamed near the nerve root at the spine, a steroid shot there won't help. Has she had an MRI of her spine already to check for bulging discs pressing on the LFCN?
The place where the nerve often gets rubbed on, trapped, etc. is where it exits the pelvis near the Anterior Superior Iliac Spine, or ASIS. You can even find videos on youtube of ultrasound guided steroid injections to the lateral femoral cutaneous nerve. Here is just one example:
I'll have to type out think link because I only have 2 posts, and this forum won't let me include links unless I have 10 posts.
go to "youtube" "*edit*

You can also find youtube videos of people who have had nerve resection surgery to their LFCN, and have had good outcomes, with no more pain, only lack of feeling in their thigh.
Here is one: *edit*
remove the space between youtube and / to get the link to work.
I hope this works.

paperbag

Originally Posted by DebbieK

Thank you for the quick reply.My daughter had a cortisone injection into the nerve without an ultrasound.She had an ultra sound guided epidural block in the lumbar region at the base of the nerve last week. She felt the medication going into the nerve we had hoped it would work.Doctors seem unable to treat this condition.It is so frustrating.

Why is surgery discouraged? No one has told us why just that they won't.I have read online that it can help.Knowing what you know,now after living with M P many many years would you have considered surgery? Do you know of a specislist who has knowledge of
M P ? I have scoured the internet looking for answers.I found John Hopkins in Maryand and a DR Ducic in Wasington D.C.Any knowledge of these doctors? They are both very far from Indiana where we live. I just can't bear to see her suffer she is so young. Thank you for listening we are struggling so much with this horrific condition.As her mother I wish I could just take the pain and carry the burden for her. Debbie K

[Hopeless]

Dear Debbie K,

I do know how you feel and the frustrations you and your daughter are experiencing. Spinal injections are not effective in treating MP. Been there... done that. Finding answers on the internet are difficult. Most of the information is directed toward the temporary causes and effects of MP, not the chronic, long term, debilitating, constant type of pain that can happen. I searched and searched for answers, for help, for a doc that seemed to know about MP, for someone that would DO something. It is very difficult and you feel so alone.

You mentioned that your daughter was diagnosed by a neurologist. Is he the doctor that is treating your daughter? Has your daughter seen a neurosurgeon?

I was sent to an orthopedic surgeon that sent me for a spinal injection He also wanted to operate on my back.

I was seen by neurologists that did nerve conduction tests, EMG testing, and of course, these tests do not show MP since the LFCN is a purely sensory nerve. I was put on oral meds including Lyrica. I was given a TENS unit to use. I used Lidoderm pain patches. I was sent to physical therapy. Nothing worked.

I demanded to see a neurosurgeon and he said that surgery might be an option and they might be able to move the ligament off of the nerve but he retired and was the only one I found that would have been willing to perform the surgery.

I was finally referred to an anesthesiologist that specializes in pain management. He suggested a direct injection into the LFCN. Because of my age and other medical conditions, he did not use a steroid. I had immediate and total relief before I left the procedure room. I was amazed. I was ecstatic. I got home and a few hours later, the pain returned. It was like going to the dentist and having novacaine that wore off in just a few hours. At my follow up appt. I told him what happened and he consulted with my other docs on using a steroid. A plan of action was developed that would allow me to have a steroid injection and I was scheduled for it and took all the precautions required due to my other health issues. The results were minimal at best. We then discussed radio frequency ablation as our next option. We mutually agreed to try one more abdominal injection directly into the LFCN before doing ablation. He used a combination of drugs and I left the procedure room unchanged. Keep reading. About 10 days later, I noticed that I was not in "constant" pain. All the electrical shocks, the lightening bolts, the stun gun feelings had stopped. I could sleep without feeling like I was being electrocuted. The burning was a bit better. As time went on, improvement continued. This was the BEST thing that happened to me. It was not gone but there was so much improvement, I was a happy camper. The effects lasted for months.

I could write more and more but don't want to take that much space and make you read too much. As you have probably learned already from your research, the LFCN, may present differently in different people so using a fan-like injection helps get the drugs in the area of the nerve even if it is a little off course.

I don't know if you came across the article written by a doc in Ohio called, "Meralgia Paresthetica, The Elusive Diagnosis" but it is good reading. It is written about surgery for MP and would be good to read before considering that option. I suggest that your daughter try an additional injection into her abdomen to reach the LFCN before proceeding to either ablation or surgery.

What type of physician did her LFCN injection? If not being done by an anesthesiologist or a neurosurgeon, I would seek someone that uses ultra-sound guidance. It is my belief that a neurosurgeon or an anesthesiologist can hit the LFCN without ultra-sound but I personally would desire ultra-sound guidance if done by someone else.

First we go through doctor after doctor trying to get a diagnosis and then once we finally get one, we then can't find someone willing to help us. Of course, this is all based on my personal experiences and not offered as medical advice in any way shape or form. I really do know what you are going through. Your daughter is much too young to spend her life as I did with no help until recently. This purely sensory nerve can become debilitating due to the pain. No one seems to take it seriously because it is not a motor nerve. Yes, we can sit, stand, walk, ........ it just is very painful to do it. There have been times when I wanted to amputate my leg. Because your daughter has had MP for several years, the numbness may be permanent but it is not painful. She will just have to be careful not to injury herself in that area as she may not feel the injury. The pain comes from the other symptoms of which there may be many.

I hope some of this is of some help. If you have any other questions, please ask. Also, please stick around and keep me informed of your daughter's progress. Wishing her the very best and hope that she will find someone willing to help. Oral meds for ONE sensory nerve is useless in my opinion. Why treat the entire peripheral nervous system for ONE nerve?

I know finding the right person is a major task. It is not like you can make an appointment with every neurosurgeon in your area until you find someone that will help.

I suggest that you find someone that is good at injecting the LFCN and try that once again before moving toward more drastic measures. PLEASE keep in touch.

Hopeless