Why would Botox make you worse?

Botox options, which Doctors use this form of treatment and techniques offered.
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Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Why would Botox make you worse?

Post by Faith »

I had botox injections into my left levator ani and obturator internus muscles 3 months ago. I am still worse since this treatment. I've been thinking about it a lot and have a few ideas/thoughts as to why I might be worse, but it doesn't make a lot of sense. So I was hoping to get some input from you all. Why do you think botox would make someone worse? It is a drug that supposedly has a temporary effect so why the drastic change in pain levels (and even on the side that wasn't botoxed)?!

I keep hoping it will eventually go away and I will be at the pain level I was before the injections, but it doesn't seem to be happening. I've had to start new meds even since the botox and have become much more debilitated.
-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
carolynm
Posts: 465
Joined: Fri Jul 22, 2011 4:25 am
Location: CO

Re: Why would Botox make you worse?

Post by carolynm »

Oh, I think about you every day and was hoping to hear better news. Did you have an appt w/Loretta down in AZ? What about calling her to get her opinion? I don't know if you've tried Hibner's office but they are very lackadaisical about returning calls.

I know you have a very tough decision that lies ahead of you. May you find peace in whatever decision you make.

My best wishes and thoughts are with you
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)
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Why would Botox make you worse?

Post by helenlegs 11 »

Hi Faith , really sorry to hear about this. . .the only thing I can say is that I had botox, but into my piriformis muscle so a different case but as I only had it done on one side I had the better side as a 'control' (both sides are affected just got botox in worst) Although the effect of the botox did start to lessen after around 3 months I could still feel that it was being effective to a degree up to 5 months later.I hope with the bad effects wear off for you soon ((((hugs))))
To try and answer your question (struggling here tho') is it because the other muscles are having to work overtime to compensate for these ones being relaxed and non functional. Maybe that's where your entrapment(s) are and not in the exact vicinity on the botoxed ones. I haven't looked at a pelvic pic to refresh my memory where they are, will later, doubt it will help much but I'll give it a go :)
more (((hugs)))
Helen
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.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Why would Botox make you worse?

Post by Violet M »

Faith, I'm sorry you are still feeling worse from the Botox procedure. :( I've known several people who have gotten worse from Botox but I don't have an explanation for it. I also know several people who seem to have had bad reactions to steroid nerve blocks. No idea why other than that as with any medication maybe some people have bad side effects due to their genetic make-up. Another theory is that the injections themselves (with nerve blocks or Botox) can cause additional scar tissue to form or they can get too close to a nerve and cause nerve damage. Whatever has caused your additional pain, I hope it will wear off soon and you can at least get back to your pre-Botox levels.

Hugs,

Violet M
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.
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Why would Botox make you worse?

Post by Faith »

Thanks for your kind words and concern.
carolynm wrote: Did you have an appt w/Loretta down in AZ? What about calling her to get her opinion?
Yes, I saw Loretta and have emailed with her about my worsening and new symptoms. There wasn't a lot she could really offer, but she does think it is likely muscle compensation from the botox. It's just strange because I also have a lot of burning too which seems more like nerve pain. But it seems to be more outside the distribution of the PN (like around the ischial tuberosities).

The botox has also worsened my SI pain which I think is interesting. I guess my pelvic floor was helping to stabilize my pelvis so now that it is "paralyzed' my quadratus lumborum and hamstrings are having to work harder. Interestinly my piriformis isn't horrible (never really have had sciatic issues). Several docs/PT's have attributed my PN symptoms to SIJD, but it seems to me if my pelvic floor tightness/pain was caused from muscle spasms due to SIJD then the botox would have helped. So I feel pretty confident my pain is nerve related the question is: is it PN only or PN + another nerve or just another nerve?
-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
susibee
Posts: 60
Joined: Wed Mar 16, 2011 4:12 am
Location: New Hampshire

Re: Why would Botox make you worse?

Post by susibee »

Faith,

I'm sorry to hear about your worsened pain after Botox. How are you doing? Do Dr. Hibner's diazepam/baclofen vaginal suppositories help at all?
Vulvodynia diagnosed '01; symptom was occassional vulvar itching/rawness after sex.
Autumn '10, localized clitoral and left labial burning after sex
March '11, new left buttock pain, worsened clitoral/left labial pain/burning.
May '11, increased sitting pain.
Summer '11, pain decreased/plateaued to 0-4/5.
Treatment: 75 mg nortriptyline nightly, definitely helps; PT x 4, didn't really help.
Consults with Hibner and Dellon, left me with questions.
Next step: MRI in NYC or VT.
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Why would Botox make you worse?

Post by Faith »

Susibee,

I am getting by. I mostly stay at home other than sometimes going to church for 1 hour and the occasional short errand/function. I can't tolerate sitting much at all, even on a cushion. It's been almost 4 months since the botox now.

No, I haven't gotten much relief with the valium/baclofen suppositories. I actually started taking baclofen orally and got a little relief (as in it would sometimes bring my pain down from an 8 to a 6), but I seemed to build up tolerance to it quickly and increasing the dose has caused tachycardia (fast heart rate) so I am weaning off it now.
-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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