Kerry, how many years have the nerves been damaged? There are people who had surgery after 15-30 years who have gotten better from surgery so maybe you want to keep the possiblity in the back of your head if other treatments fail.
Good luck,
Violet
Neurostimulator Patient
Re: Neurostimulator Patient
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.
Re: Neurostimulator Patient
Kerry
First of all which Dr Emmanuel have you been recommended to see as there are many in the UK?
I haveent found any who have experience of inserting a Stimulator so far.....the actual insertion is crucial to the end result.
If I was you I would definitely seek a second opinion, I can recommend Walton Neurological Centre with Dr Sharma as head of the Pain Clinic and Dr Farah as Neurosurgeon for implantation..unless you want to go to Dr Van Buyten in Belgium....he really is the MAN.
Surgery as Violet has said has helped many people who are many years with nerve damage...so dont take everything said as Gospel please...take your time and learn as you go. If you want to talk to me let me know please.
First of all which Dr Emmanuel have you been recommended to see as there are many in the UK?
I haveent found any who have experience of inserting a Stimulator so far.....the actual insertion is crucial to the end result.
If I was you I would definitely seek a second opinion, I can recommend Walton Neurological Centre with Dr Sharma as head of the Pain Clinic and Dr Farah as Neurosurgeon for implantation..unless you want to go to Dr Van Buyten in Belgium....he really is the MAN.
Surgery as Violet has said has helped many people who are many years with nerve damage...so dont take everything said as Gospel please...take your time and learn as you go. If you want to talk to me let me know please.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
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stephanies
- Posts: 692
- Joined: Mon Oct 25, 2010 3:07 am
Re: Neurostimulator Patient
Amanda,
I am curious as to whether over the 3 years that you have had the stimulator the amount of pain relief you receive from it has increased, decreased, or remained the about same. I am so thankful you are willing to share your experiences with the forum.
Stephanie
I am curious as to whether over the 3 years that you have had the stimulator the amount of pain relief you receive from it has increased, decreased, or remained the about same. I am so thankful you are willing to share your experiences with the forum.
Stephanie
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
Re: Neurostimulator Patient
Hi Stephanie
Well it is very hard for me to evaluate how much of a percentage that the Stimulator has given me.....I can walk much better, I can stand up better but sitting is still not a good position for me....if I sit for more than half an hour then im in agony for hours later...I still use ice 24/7 to ensure some relief from the zinging in the bladder and vulval regions.....vaginally I struggle with no secretions which have to be supplemented manually...urination is painful, but i have less spasms wth the Stimulator. My overall pain levels are less so long as I dont try to do too much....if i sit I am in trouble for a few days!
However i can get around much better than pre Stimulation....I still have huge incontinence issues....depending on how long I sit!!!
I am about to embark on a long journey by car which is daunting....im dreading it to be honest....the rewards will be great but the effort will be huge...Ive packed so much ice and other methods to calm things down its hardly worth the effort!!!! My sister has just had a new baby and I long to see both Mother and baby...thats why Im making the trip....but once Im home again i will be useless to anyone for days!!!
My only answer to you is that I wish I had had a chance to try out the Stimulator years ago....the lack of Stimulation lost me many things that are irretrievable....my family ....they have move onwards without me! I have followed every protocol available and hav enow found one that allows me to be somewhat alive and normal....i have to be happy with what Ive got now and i am.....I have adjusted my life to allow for PNE pain...many cannot understand this adjustment but my cushions and ice are part of me forever!
Well it is very hard for me to evaluate how much of a percentage that the Stimulator has given me.....I can walk much better, I can stand up better but sitting is still not a good position for me....if I sit for more than half an hour then im in agony for hours later...I still use ice 24/7 to ensure some relief from the zinging in the bladder and vulval regions.....vaginally I struggle with no secretions which have to be supplemented manually...urination is painful, but i have less spasms wth the Stimulator. My overall pain levels are less so long as I dont try to do too much....if i sit I am in trouble for a few days!
However i can get around much better than pre Stimulation....I still have huge incontinence issues....depending on how long I sit!!!
I am about to embark on a long journey by car which is daunting....im dreading it to be honest....the rewards will be great but the effort will be huge...Ive packed so much ice and other methods to calm things down its hardly worth the effort!!!! My sister has just had a new baby and I long to see both Mother and baby...thats why Im making the trip....but once Im home again i will be useless to anyone for days!!!
My only answer to you is that I wish I had had a chance to try out the Stimulator years ago....the lack of Stimulation lost me many things that are irretrievable....my family ....they have move onwards without me! I have followed every protocol available and hav enow found one that allows me to be somewhat alive and normal....i have to be happy with what Ive got now and i am.....I have adjusted my life to allow for PNE pain...many cannot understand this adjustment but my cushions and ice are part of me forever!
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
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stephanies
- Posts: 692
- Joined: Mon Oct 25, 2010 3:07 am
Re: Neurostimulator Patient
Amanda,
Thank you for sharing these details. You are an inspiration to all who face monumental challenges each day, especially those of us with chronic pain. I wish you well on your trip and hope that your pain will be tolerable and your heart filled with joy when you see your sister and her new baby. I know that you have also lost so much in this PN journey and please know I am sending you my gratitude for all you have given us here at the forum including (but certainly not limited to!) information on your experiences with your stimulator.
My best,
Stephanie
Thank you for sharing these details. You are an inspiration to all who face monumental challenges each day, especially those of us with chronic pain. I wish you well on your trip and hope that your pain will be tolerable and your heart filled with joy when you see your sister and her new baby. I know that you have also lost so much in this PN journey and please know I am sending you my gratitude for all you have given us here at the forum including (but certainly not limited to!) information on your experiences with your stimulator.
My best,
Stephanie
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
Re: Neurostimulator Patient
Thank you Stephanie for your kind words, im all packed up now and hope for a good nights sleep before I travel tomorrow. I may not have internet access for a few days so bear with me if i dont respond too quickly to messages and posts here on Pudendalhope.org.
Ive been a little lacking in my updates lately, i need to catch up on those when i return. As the Stimulator is the latest treatment Ive had it is fresher in my mind so maybe thats why Ive reported on that more than other treatments...!
Life is good everyday....i want more of course like everyone but I have to pinch myself and be so grateful for the life i have now.....my previous being is not here anymore, but im more calm and controlled now even with pain...it is all about pacing!
Ive been a little lacking in my updates lately, i need to catch up on those when i return. As the Stimulator is the latest treatment Ive had it is fresher in my mind so maybe thats why Ive reported on that more than other treatments...!
Life is good everyday....i want more of course like everyone but I have to pinch myself and be so grateful for the life i have now.....my previous being is not here anymore, but im more calm and controlled now even with pain...it is all about pacing!
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Neurostimulator Patient
Hi Amanda
The doctor fitting the stimulator is Dr Andrew Baranowski from London. Dr Emmanuel is helping with all the toilet problems and working with Dr Andrew Baranowski.
Kerry
The doctor fitting the stimulator is Dr Andrew Baranowski from London. Dr Emmanuel is helping with all the toilet problems and working with Dr Andrew Baranowski.
Kerry
Re: Neurostimulator Patient
i wasnt aware that Dr B was authorised to fit Stimulators....this is news to me to be honest, ive been away and need to do a little study about this...bear with me please. I would be cautious about having a stimulator fitted by a doctor who has little experience of this practice.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Neurostimulator Patient
hello everyone,
well the week has arrived for my trial neurostimulator, i am going in on thursday. I have mixed feelings, nervous, excited and hope.
Will let you know how it goes.
Kerry
well the week has arrived for my trial neurostimulator, i am going in on thursday. I have mixed feelings, nervous, excited and hope.
Will let you know how it goes.
Kerry
Re: Neurostimulator Patient
Best wishes, Kerry!
My thoughts are with you!
Warm regards,
Karyn
My thoughts are with you!
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.