New Mom, New PN Diagnosis, Incredibly Scared

[jamiegross]

Hi!

Your in good hands on this website.. everyone here is also suffering or has suffered a great deal, so everyone is relatable yet informative.. you should first try to establish wether or not you have entrapment or neuralgia.. the treatment for each is very different.. for entrapment, alot of people opt for surgery with perhaps Dr. Hibner or other well established specialists (although some manage the pain with medication and physical therapy, its all choice , surgery can potentially worse but i dont think it is that likely)..

I was just recently diagnosed with neuralgia at age 20.. I am seing the best doctor in the southern hemisphere ( im currently abroad in australia) and his treatment plan for me is physical therapy and acupuncture with someone who knows pelvic pain.. also, i am on 400 mg of lyrica and 40 mg of cymbalta.. it hink that the lyrica has helped with the burning in the vulva, so perhaps that is an option you may want to try.. i havent really found the best way to sit, i really try to avoid it whenever i can..

please don't lose hope .. this is a very scary thing, especially when it first happens, but be thankful that you have a diagnosis so quickly and know where the pain is really coming from so that you can focus on treating it..

[donstore]

Hi NewMom,
I have been told by patients of Dr. Jordan's that he is a very smart guy about PN and great at diagnosis, injections, and medication management. I also heard that he will give you a 20 per cent discount off his regular fees ( if you ask for it ) since you have to pay cash up front and get what you can from your insurance. Also, he will try to utilize the least expensive sites he can if you decide to go for more injections under CT guidance. I was also told that he does not believe in surgery for PN, so be aware of that. As my signature says, I have found Lyrica to be quite effective without any side effects although you have to be agressive with your insurance because they hate to pay for it. I use hydrocodone and oxycodone as well. Ezer just posted a positive review of Opana (oxymorphone). Dr. Jordan should know the correct ICD-9 diagnosis codes to get your insurance to cover the lyrica. Good luck. We all know how you feel.

All My Best,

Don

[merrie]

New mom-

I also live in Los Angeles and have been a patient of Dr Jordans for 2.5 years. Please feel free to pm me and I can share whatever info I can about local doctors, physical therapists, etc. Who is your Dr at Ucla?

Merrie

[merrie]

Oh and about Dr Jordans fees - I pay cash and then submit to insurance. So even though the consult seems pricey -if you have an insurance plan with decent out of network benefits, you should get reimbursed for about 60-70% or more.

Merrie

[NewMom]

Thank you so much everyone for all your posts and advice - I am so thankful for this forum and for people like you out there. I have to admit that each day, each hour is so incredibly difficult for me to get through without crying. I'm still in the grieving process I guess.

HerMajesty - thank you for the link to Celeste's success story. It was really uplifting. I know I'm still early on in the diagnosis but I want to treat PN as quickly as possible. I just made an appt for Dr. Jordan for next month.

Celeste - thank you again. When I see my pain doc today, I'm definitely asking for an anti-depressant and possible referral to a therapist. This depression has gotten so bad that I cry constantly. I didn't really see the point in having an MRI and CT scan in my case since we know exactly when and how PN was caused in my situation. But I did notice that Dr. Renney requires both tests prior to an appt with him. Maybe I should ask a doctor to order those tests for me?

Ali - thank you for letting me know about the 3T tests with Dr. Potter. It sounds a like wonderful test and may let you know if you're a good candidate for surgery? I just don't know since finances are a huge concern for us with me being unable to work and having a brand new baby. NYC is a relatively long plane flight since I can't sit more than a few minutes w/o pain. Are there any options for similar tests closer to me in LA (besides Dr. Filler)? I see you have a redo surgery with Dr. Hibner next month. I can't wait to hear how that goes!

Jamie - I'm so sorry to hear that you are so young and dealing with this. Even at 32yo, I feel so devastated. I'm trying to hang on to hope but I have to admit, most days I feel hopeless. Maybe it's just the depression talking. Anyway, how do doctors differentiate between entrapment or neuralgia? I was under the impression that you could only know for sure once the doctor cuts you open for surgery.

Don - thank you for your comments. When I made my appt with Dr. Jordan, I explained to them about my financial situation, however the receptionist said he doesn't give discounts on the initial consults ($618) and may or may not give discounts on future injections. I'm so scared of bankrupting us with my condition. Everything does seem so overwhelming...

Merrie - I'm so happy to know of another PN sufferer in LA. I just sent you a PM

Thank you again everyone. I have so many more questions that I'm sure I'll be posting more topics so I hope you don't mind. You all are so wonderful.