New and completely, utterly, scared :(

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Anya
Posts: 6
Joined: Mon Apr 29, 2013 11:37 pm

Re: New and completely, utterly, scared :(

Post by Anya »

Thank you so much HerMajesty, this is incredibly useful information. I am on 300mg 3 times a day. Gabapentin doesn't do any nerve healing right? My doctor said it calms the nerve but that doesn't necessarily mean help it heal, right?
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: New and completely, utterly, scared :(

Post by HerMajesty »

My prescribing doc (not my surgeon) insisted that I should stay on at least 1800mg gabapentin for 2 years post-op because he says at doses of 1800mg daily and above, it DOES promote nerve healing. I know other people who have been told similar things by their docs but I have NOT checked out the research behind that claim. I'm happy to stay on it anyhow for now because I was on 4 different meds and gabapentin is probably the least objectionable of any of them. So as I heal, I have gotten off two meds already and will get off the gabapentin last. The 4 meds was a customized "cocktail" my doc and I developed through trial and error because I wanted to avoid narcotics (p.s. - I learned the hard way - don't accept tramadol because it "isn't a narcotic" - it acts the same as a narcotic but they tell you it isn't one, because narcotics are plants and tramadol is synthetic).
The emphasis is, I used gabapentin pre-op for symptom control and post-op I am on it for nerve healing. If a nerve is being actively compressed, I think that negates any kind of healing effect gabapentin could have on the nerve.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Violet M
Posts: 6714
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: New and completely, utterly, scared :(

Post by Violet M »

Anya wrote:
Would it be better to do an MRI here through a university hospital and present it to him (cheaper, payment plans) or would that mess things up as there aren't PN specialists here? I'm in New Orleans. Does it make a difference where you get the MRI?
Anya, I'm not sure other than to say if you do it in New Orleans, try to see if they can follow the same protocol used by Dr. Hibner and check for tarlov cysts and labral hip tears in addition. Maybe the radiologist in New Orleans can contact Dr. Hibner's radiologist to find out what the protocol is.

Try sending GregT a private message to see if he knows any good physical therapists in your area. He is from Louisiana.

Best,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: New and completely, utterly, scared :(

Post by nyt »

I think you need to check with the MRI facility, not Dr. Hibner's office, about the payment plan for the MRI. I know the hospital does have a plan that you can ask for assistance to pay for bills. Below is the link.

http://www.stjosephs-phx.org/Patients_A ... V2_M063819

I do not know if Dr. HIbner's office has a payment plan.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
rea
Posts: 123
Joined: Fri Sep 07, 2012 8:16 pm
Location: USA

Re: New and completely, utterly, scared :(

Post by rea »

Anya,

I was told the MRI was 1,500.00. I don't know what the other related costs to that would be (tech, etc.) Also, last week when I checked on my co-pay for the nerve block, I was asked did I want to be transferred to set up a payment plan for Hibner's part.
I am so sorry for the pain you are going through. Like you, I hated to take an over the counter med much less prescribed meds. I do take narcotics now and yes it is scary, thinking about dependence. But I knew I couldn't keep having such high levels of pain for reasons explained by HerMajesty.
When I first joined I read and read. This site has been like a "guide" for me. It's up to the individual to make choices that are best for them, but I know I would have made really bad ones without the information on here.
I am praying for you...
Rea
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: New and completely, utterly, scared :(

Post by helenlegs 11 »

Hi Anya,
Belated welcome from me :) I don't know if there is anything else to add as you have had fantastic advice from 'the girls' here.
Personally, I wouldn't get too caught up in the idea that you have to have an MRI scan tho', as they often don't show anything for PN, although they can also rule out any lower spine or sacral problems like tarlov cysts and labral hip tears. Results from a scan are great but this may not happen and if it is going to be too costly I would always miss this bit out in favor of a good clinical examination by a clinician who knows their stuff and takes good account of your history and onset of PN problems, as say Dr Hibner would do.
I would also take HM's advice about physiotherapy. The Houston team may be able to suggest someone who is PN aware who is closer?? if they can give you good recommendations that would be ideal. BUT do have PT. . . . .you will need to have your pelvic floor assessed, tight muscles there can cause PN but can also be worked on and hopefully that's all that will be needed :)
I would also endorse trying medication but see that you have Gabapentin now :) hope it does the trick although it is most effective when teamed with an antidepressant. I would say that you are very sensible being cautious about meds in general. Introducing one at a time (if you do need to add more later) is the best way of assessing exactly how and if they are working and what lasting side effects, if any, are associated with them and with any increased doses.
Gabapentin was effective for me to a fair degree, and I did take this drug for quite a while, ramping it right up. I took Cymbalta alongside Gabapentin, still do take it actually although have replaced Gabapentin with Lyrica now.
Some cognitive pain management therapies could be very helpful too. There are some on line sites like http://goalistics.com/ They offer a pain management course for a fee but if you just subscribe to them they have good regular blogs they will send and you can access their informative back blog catalogue too, all free of charge :) Maybe take a look at things like that if and when you have some free time to really relax. Because the pelvis is a complex thing and as PN can sometimes be difficult to assess. . . many people feel overwhelmed with more and more info. It can get a bit much, so try and take things one step at a time. . . . .fingers crossed for your medicaid application.
Glad that you have found Hope although of course I am sorry that you have needed to and that you are suffering badly at the moment.
I'm sure that the help you will get from the 'team' here will help emotionally as well as medically.
Take care,
Helen
ps if the above and other recent posts have a nonsense content, fully or partially, blame my increasing lyrica content ;) :)
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Anya
Posts: 6
Joined: Mon Apr 29, 2013 11:37 pm

Re: New and completely, utterly, scared :(

Post by Anya »

Thank you so much, everybody. My muscles do feel tight but I do not know if that is a cause or consequence of the PN. My doctor increased the Gabapentin, we will see how it goes.
Bobby
Posts: 64
Joined: Wed Nov 02, 2011 3:53 pm

Re: New and completely, utterly, scared :(

Post by Bobby »

Hey Anya, as hellen said, get your pelvic floor assessed. A overly tight pelvic floor can cause pudendal nerve issues and if that is the issue than its much more affordable to treat. Let me know about that. Depending on your location you could find a physical therapist who specializes in pelvic floor dysfunction and possibly spend from 80-100 bucks for the assessment and first session. Good luck.
http://www.pudendalhope.info/forum/viewtopic.php?f=35&t=4792&p=35398#p35398
Read this post, it will likely explain everything.
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