[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.

[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

[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

[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

[DJ928]

Hi I have Meralgia Paresthetica
I have been frustrated for years now I have been to countless doctors and specialists and it seemed every time I found or thought I was getting close to finding out what it was and how to treat it almost every time I had to start at the beginning again. I was so sick and tired of everyone telling me that it was the slightly herniated disk in my lower spine. I found a specialist that said it was not my disk and still I was searching. My PCP had put me on Lyrica and it has been helpful but after all this time of using drugs I am now experiencing side effects similar to E.D. My PCP finally sent me to a Neurologist and he diagnosed me with Meralgia Paresthetica and again I thought I am getting close to a solution. He even mentioned a surgical treatment that may fix it. Months went by and I hadn't heard a word keep in mind I am not on disability and working at minimum 40 hours a week. So I called him back and asked about the surgery and guess what he told me... Well there is no surgeon that will want to just go in and attempt to fix it even with a diagnosis lets have a look at a MRI of your lower back. I wanted to shoot him! So I go down and get yet another MRI and send it to him months go by, finally a call from him and he says it is not your lower back. So I ask again about the surgery he says that there is no surgeon that will want to do the surgery because the nerve is so small and difficult to locate. So I am now back at square one. I have been chasing a cure for at least 8 years now and yet to no avail. I am planning on asking my doctor about disability and seeing where it goes from there. I will also be investigating the corticosteroid injection into the groin it is said to help. Of course lucky me I have it on both sides so that means two injections in the groin I only weigh 140 lbs and my pants are so loose they almost fall off so I am wondering what caused this condition. Any way I hope at least some of this information helps someone out there.

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.

[Hopeless]

Hi DJ928,

Welcome to NeuroTalk. I know exactly how you feel. I spent years going through very similar situations. At one point, I was sent to an orthopedic doctor that wanted to operate on my lumbar spine and I declined as I knew THAT was not the source of my leg pain. Anatomy 101 was enough to know that. It was not radiculopathy. (I do have spinal issues, both thoracic and lumbar but they have nothing to do with the MP.)

So you have bilateral MP? Have you tried any conservative treatments other than taking Lyrica? Physical therapy? Lidoderm pain patches? TENS unit? The injections are painless and very beneficial to some with MP.

Another option is radio frequency ablation of the LFCN, lateral femoral cutaneous nerve. Surgery is a last resort.

You may want to find a good pain mgt. clinic with a board certified anesthesiologist for treatment.

Don't give up. Help is out there. It may be elusive but I finally found help after decades. After 35 years, I found my pain mgt. doc.

And if you do get the injections, don't give up if they do not work on the first or second try. Sometimes it takes several before you will get relief. If the compression remains, so does the MP, but the symptoms can be reduced. It is not a one shot cure all by any means for someone that has an 8 year duration. The only time I have ever heard of a first and only injection resulting in no return of MP symptoms has been in acute cases of short duration.

The trick is to find the right doctor. Don't give up.

[sinisterporpoise]

DebbieK, how far are you from Terre Haute? I'm not entirely sure, but I believe the Christian Hand center deals with chronic pain issues. (Of course, I've never been sure if Christian Hand is the guy's name or if it's a Christian center dealing with hand issues.)