Update on Faith

Botox options, which Doctors use this form of treatment and techniques offered.
carolynm
Posts: 465
Joined: Fri Jul 22, 2011 4:25 am
Location: CO

Update on Faith

Post by carolynm »

Faith,

How are you doing after your Botox? I've been off the internet for a week and wonder how you are doing.

cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Update on Faith

Post by donstore »

Faith, I am also wondering how you are doing.

Best,

Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Update on Faith

Post by Faith »

Thanks for asking guys. It's been 3.5 weeks since the botox. Honestly I'm not doing very well. The bad part of the flare is over (the part where I couldn't hardly walk or do anything but lie on the couch), but I am still in more pain than I was before I went. I've been trying to go back to PT and internally my muscles are more spasmed (especially the pubo and ilococcygeous muscles) than they were before....so weird. I have a lot of pain around my coccyx and I think the ST ligament (not injection pain anymore). I am just hoping this flare will eventually die down and that I am not worse long term from the botox. Although it wouldn't be too surprising as every other treatment I have had has only seemed to make me worse.

I did decide to quit my job...it was just too hard. Way too much sitting and I have tons of feet/leg pain/burning that I can't stand for 8 hours. I have peace about quitting. Now I am just hoping to either find some successful treatment or find a better way to manage the pain. Am awaiting a call from Dr. Hibner to see what to do next.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Update on Faith

Post by helenlegs 11 »

Good luck Faith. I'm sure Dr Hibner will be able to sort it all out for you. Take care.
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.
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Update on Faith

Post by Lernica »

I'm sorry to hear that you're still suffering from the botox injections, Faith. I am sending wishful healing thoughts your way. I am confident that you will feel better as the effects wear off.

I too have also recently decided to throw in the towel job-wise. Sure I can stand at my desk all day, but then I collapse and cry in pain at home. Not worth it. After obtaining a professional degree, working for the same great employer for 24 years at a job that I loved, I (like you) am still at peace with my decision. There is nothing more important in life than spending quality time with family and those who are dear to you.

Thinking about you.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Update on Faith

Post by donstore »

Hi Faith,
I am really sorry to hear that you are having a hard time. It's really tough to face the pain every day and still keep a positive attitude. I don't know if you have tried Lyrica or oxycodone but they have both helped me get thru the day. It's good to hear that you have come to terms with giving up your job for awhile. People so often allow themselves to be defined by their work and it is difficult to give up that part of your life but there are times when you need save your energy for yourself and your family. I know that there are better days ahead for you. Sometimes you just need to take things one day at a time.

All My Best,

Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
carolynm
Posts: 465
Joined: Fri Jul 22, 2011 4:25 am
Location: CO

Re: Update on Faith

Post by carolynm »

Ah Faith....I am in the same boat with the decision to keep working or not. I worked my 3 (12) hr shifts last weekend and then went to check myself into the ER for pain. Stayed 2 nights as an inpatient on a Dilaudid PCA. I just can't wrap my head around quitting my job...I feel like I'm letting this disease beat me and I have not mentally given in to that yet. I may be right behind you on this one.....

cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Update on Faith

Post by Faith »

Wow Cari, so sorry to hear about your hospitalization. I went to the ER last year and it was the biggest waste of money. They tried to give me Lortab (which I already had) and tordol. Spent $300 for nothing.

I personally felt no emotional attachment to nursing. Being a wife and mother is my main responsibility I don't like working as a nurse in a hospital in the States. It was just what I had to do to make money for my family for a while. We had planned to return as missionaries long term overseas, which is the aspect of nursing I absolutely love. But PN entered my life. You can read my blogpost about some of my thoughts on quitting http://thepurposeofpain.blogspot.com/20 ... ng-up.html.

I think it comes to a point where you have to think about quality of life. I was trying to work and then having to come home and lay on the couch while my mom cooked/cleaned and raised my daughter. That's no life. I've lived with this for almost 3 years and the last year I have debilitated quickly. As it stands from what Dr. Hibner's nurse said the earliest surgery schedule isn't until July 2012 so I'm looking at almost another year (possibly longer if Hibner wants me to have more injections, which is what I am afraid is going to happen) before I can have surgery, if I decide to go that route. Sometimes I think maybe I just need to look into other pain management options though. Still thinking....
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Update on Faith

Post by HerMajesty »

Hi Faith,
have you considered Dr. Conway? Personally If I needed decompression surgery I would probably go to him because of the lack of waiting time. Karyn did so well with him, I really do think the new surgical technique he is using makes him a viable option. I assume you waited several months to see Dr. Hibner and now a year to surgery - that just isn't right :(
Anyway I'm sorry about your job and that you are not feeling well. I quit working too and now that I am not so overwhelmed, I am teaching Sunday school to the tweens and teens, and am helping a friend start a new neighborhood ladies' Bible study - There is a mission field right here in the USA. I am finding that no matter how bad I feel before and after, when I am actually out there teaching the Word I forget all about the PN. I can also speak articulately when teaching although if I try to just have a regular conversation before or after, I can barely string a sentence together because of the meds. It's really called my attention to how God can equip us to do His work even when it is definitely beyond our own strength. I hope the decision not to work leaves you with lots of time to lounge around in your PJ's and enjoy your daughter, but also gives you some freedom to do the Lord's work.
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.
User avatar
Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Update on Faith

Post by Celeste »

Faith wrote:I think it comes to a point where you have to think about quality of life. I was trying to work and then having to come home and lay on the couch while my mom cooked/cleaned and raised my daughter. That's no life. I've lived with this for almost 3 years and the last year I have debilitated quickly. As it stands from what Dr. Hibner's nurse said the earliest surgery schedule isn't until July 2012 so I'm looking at almost another year (possibly longer if Hibner wants me to have more injections, which is what I am afraid is going to happen) before I can have surgery, if I decide to go that route. Sometimes I think maybe I just need to look into other pain management options though. Still thinking....
Hang in there, Faith. You've come up against an unfortunate reality about having surgery with Dr. Hibner--it can take a commitment of years to get your treatment completed, especially if you require bilateral surgery since he only does one side at a time. That's a long time to wait. There's also a risk for some that they might lose their insurance before they can complete treatment. I learned that ob-gyn's are now coming out with guidelines to give to newly pregnant patients about what to expect if they lose their insurance due to unforeseen reasons during a pregnancy--it's become that common in these economic times that now patients are being warned up front to learn their options. :shock:

I hope you will look at all of your options and that the right path for you will be clear.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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