[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

[DebbieK]

A big thank you for the quick replies.
The feeling of support and knowing that you are not alone really helps. My daughter has said many times I feel like people think I am making this up that the pain isn't real. I will follow up on things mentioned here. It is such a slow go to search hunt find make appointments try meds try more meds try this try that. It is such a needle in the haystack process.

To top it off my daughter is on my insurance plan (a really good awesome old fashioned plan) for about another year then she goes to her employers plan that has a huge 5K deductible with very no coverage until the deductible is met. We feel like a clock is on us. She is fearful of paying for meds each month. The pain patch alone is a chunk of change. She is going to try Cymbalta now and is also on Tegretol she has no headache pain(big surprise its a migraine med) but her MP is still raging. Thank you for your suggestions and advice. We do not feel so alone. Thanks again,Debbie K

[paperbag]

How far are you from Chicago? I am in a suburb of Chicago.
I have found that my local hospital has two doctors who do ultrasound guided steroid shots. It's a lot closer than Baltimore.

[DebbieK]

Originally Posted by paperbag

How far are you from Chicago? I am in a suburb of Chicago.
I have found that my local hospital has two doctors who do ultrasound guided steroid shots. It's a lot closer than Baltimore.

We are in southern Indiana about 6-7 hours from Chicago. We have contacted Dr Ivins in Iowa he is 6 hours away from Evansville, IN. There is specialist Dr. Ducic in MP in Washington DC but that is a plane ride away. Wish this condition were wider known and treated. Hope to hear from Dr Ivins in a week or so. Not sure if I should go ahead and contact the other doctor too. Its been a year in our local area we hate to waste anymore time looking here its like a needle in a haystack.
Debbie K

[rMuD]

Dr. Covington group the chronic pain rehabilitation program at the Cleveland clinic. They have successfully dealing with MP for 20 years.

Originally Posted by DebbieK

We are in southern Indiana about 6-7 hours from Chicago. We have contacted Dr Ivins in Iowa he is 6 hours away from Evansville, IN. There is specialist Dr. Ducic in MP in Washington DC but that is a plane ride away. Wish this condition were wider known and treated. Hope to hear from Dr Ivins in a week or so. Not sure if I should go ahead and contact the other doctor too. Its been a year in our local area we hate to waste anymore time looking here its like a needle in a haystack.
Debbie K

[Hopeless]

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

Hi Debbie K,

I am sure there are very qualified doctors in your area that can be of help to your daughter. It is just a matter of "finding" them. Sounds simple but it is a VERY difficult task.

Here are a few things that I would attempt to do had I not finally found my anesthesiologist/pain mgt. specialist.

Make a lot of phone calls. Call neurosurgeons offices in your area and inquire if they specifically treat MP and how. Call every one that you can find. Phone calls don't cost anything, appts, with them do. You don't want to be going to tons of docs and not get results.

Call pain management clinics and inquire the same. Do they specifically treat MP and how.

You may get a lot of "Come in and we will evaluate" but don't waste your time and money doing that until they have assured you that they specifically treat MP and have explained to you the various options that they could offer IF you were to come in.

You may want to bypass the "receptionist" and ask to speak to the nurse or have the nurse call you back. Receptionists are only going to try to book an appt.

I would hate to see you travel outside your area when there may be someone in your backyard that can and will help. It is just a matter of finding them. As I said, a very difficult task.

Asking friends for referrals (usually a good way to find a doc) will probably be of little help in finding someone to treat your daughter's MP. That works if you know someone that also HAS MP and got good results.

Talk with the doctors that you have and ask them for referrals. Does your daughter have a PCP (GP) that can help you find the proper doc?

After all the phone calls, you can weed out the ones that do not suit your needs and then concentrate on the remaining ones on your list and consider seeing them.

I would limit the scope of your calls to neurosurgeons and pain management.

Personally, and this is just MY opinion and I know a lot of people here may give me a lot of flack for this, but I would stay away from chiropractors for treating MP. I would definitely seek help only from a board certified MD.

Good luck and hope you find help SOON. Please tell your daughter that she is not alone. Help is out there, it just needs to be found. Don't give up.

One last comment. It was surgery that "caused" my MP so having surgery to correct it is something I would consider only if I had not recently found relief with my anesthesiologist. Every surgery I have ever had, corrected the problem for which the surgery was designed but every surgery also "created" a new problem.

I would try more attempts to alleviate her MP before I would "jump" into surgery. Surgery may be her best option not too far down the road but I would exhaust all other options first.

Keep in touch.

Hopeless