Another Horror Story about my treatment

[rea]

Last week, while at the neurologist I was on my knees and holding onto a chair. I had not had gabapentin for almost 1 1/2 days. I was in so much pain I broke down and took a 7.5. In waiting room (waiting for mri tesla approval) I fell over. I was too weak and in too much pain. Ambulance arrived, shot me full of something to take whatever I had in my system out, and then everyone treated me like I was "high on drugs". They did a drug screen. Only thing I had was that 7.5. Anyways, I did follow up with Dr. and she was awful. She lied between her teeth. "I have referred you to pain management and there is nothing else I can do for you." She had told me she had seen this 3 times before. Now she said she has never seen this in her life. My sis and I got her to admit the truth. She was almost hostile. I asked her about upping my gabapentin. She cannot. I asked her about burning going up my spine and neck. "I know absolutely nothing about that!" I should have reminded her she's a spine doctor. She would not give me any more days off work after telling me before that she would.
So now I wait on pain management who as far as I know doesn't take you out of work. My family doc can't because he said he's not the one treating/diagnosing me. If a miracle doesn't happen I'm going to lose my job and health insurance. I won't have a choice but to lie down and die.

[HerMajesty]

Wow, I am so sorry for you, it is very hard to get in with the right practitioners!
My saving grace was that while there was no PN doc listed on this site who was local to me, there was a PT. So, while I was in that stage of dealing with a series of useless doctors who did not believe me, I went to a Neurologist (awful like the others), and said "there is one thing I absolutely require if you are going to be my doctor". I could see his radar went up instantly because he thought I was going to ask him for a conrtolled substance. When he asked me what it was and I said I wanted a referrral to a PT, he visibly relaxed and handed the referral right over. Well, since the PT was a pelvic floor specialist, she knew every other practitioner in town who was compassionate to pelvic pain patients = no more "doctor shopping!" She referred me to an awesome pain management guy who took over my primary care including my PT referrals, so I never had to go back to the original guy for more referrals.
If you can get into a competent pain management clinic, sure they can take you out of work. They are doctors, and PA's and NP's working under doctors, just like any other medical facility. Mine has done all my diagnostic imaging referrals, etc. They also spend their entire day working with people in chronic pain, so they know how to do it and are more comfortable dispensing appropriate meds. I don't know what level they stopped your gabapentin at, but you can go to 3600 mg if tolerated. I am on 2400 mg.
The only precaution about pain clinics I would give, is that they tend to be too free with handing out narcotics at a rate that encourages regular use instead of occasional use for flares. You need to be proactive and assertive if you want to put the effort into trying various non-narcotic meds until you find a combination that controls your pain well. I would encourage that because the tolerance built by narcotics makes them ineffective for long term pain control. Another user of this board once posted that he deals with the tolerance factor by periodically withdrawing from one narcotic and switching to another to maintain effectiveness; but I only had to go through withdrawl once to determine that this is a VERY unpleasant way to manage pain. Better to educate yourself on all your non-narcotic options and request that your pain clinic practitioner work with you to find an effective combo of meds.
Pain clinics are also not just drugs: depending on the clinic they might do trigger point injections, nerve blocks, osteopathic adjustments, TENS, implanted neurostimulators, etc.; and as I mentioned mine sent me for diagnostic testing although I had to be proactive in telling them what I wanted done and why.
I just want to reassure you, pain clinic is not a dead end where you will not get help (some probably are, but if so switch clinics). pain clinics are the practitioners who are willing and able to address chronic pain, something most health care practitioners hate to do and are very bad at. So hopefully your horror story days are over. If you do have a bad pain clinic experience, I recommend you see the closest PT listed on this site, and ask the PT to recommend a pain clinic or other doctor.

[rea]

Thank you so much. I'm going to a new pain management clinic on Monday. They do nerve blocks. Have an appt. with Antalok at end of November and one with Castellano in Az. at end of Oct. I don't know which one to cancel. Antalok will do nerve block on 2nd day and Castellano is just a consultation. My sick days run out in Dec. so I need a diagnosis. Hospital put down pudendal nerve damage but neurologist said there was no proof so she couldn't do anything.
This new pain management is 4 hrs. away and the closest PT for me is about 3 1/2 hrs. Maybe I'll get some hope/help on Monday. I'm getting worse. Today, I have burn feeling since feet hit floor. Can't even stand cover touching my buttocks. Groin always seem to burn. Think I really pissed off the nerve- moved leg and felt burning pinch in buttocks one night and same thing happened last night with other side.

God Bless

[HerMajesty]

If you can get the nerve block anyhow at the pain clinic, I would lean toward Dr. Castellanos, not anything against Dr. Antolak but the appointment is sooner and having met Dr. Castellanos at a conference I would have to say that he is really exceptional. He seems open to a lot of different / innovative treatment modalities, and he is a real listener, meaning you might actually walk out of there with a treatment plan that meets your needs. That's just my opinion; you can read others' experiences in the "USA" section which includes discussions on each individual practitioner. Dr. Castellanos is discussed under the heading of Dr. Hibner.
I glanced through your prior posts and saw that your onset happened after a fall, which means it would be a real shame to skip PT because there is a chance your main pathology is related to pelvic joint injury (SIJD). A PT evaluates the pelvis hands-on: SIJD causes dysfunction of movement, and will not usually be visible on an imaging study because for imaging you lie still in a neutral position.
Since the closest pelvic floor PT is so far away and not all pelvic floor PT's even do joint work, you might want to call around and see if there are any PT's in your area who do not do pelvic floor but are able to check for pelvic alignment and SIJD. many Sports PT's will do this, and if you find a listing for a PT Manual Therapist, they are not too common but that is the specialty concerned specifically with joint evaluation and manipulation. PT evaluation really is important: If you look at my signature you will see I got my joint injury in 1985, and although numerous doctors had looked at me, none of them ever noticed the injury. In 2009, it took the PT about 5 seconds of looking at my standing posture to see what 24 years of doctors had missed. My pelvis was so poorly aligned that my right leg was 1 1/2 inches longer than my left, but no doctor ever noticed the posture compensations. they aren't trained that way.

[rea]

I cannot afford to go to both..really worried. Castellano will only be one day consultation. If he could help me the first visit to "feel better" so I could work....I can only afford to see one..job might be gone and so will insurance. I'm about to lose everything (car, etc.).
I know I have entrapment and now am having trouble with piriformis and coccyx. Dr. Filler addressed this possible entrapment behind coccyx but haven't seen anything else about it except a publication by Antolak.
Thanks for the advice about PT. If I can I will.