Hi Molly -
Thanks for the well wishes .. sorry about the late response.
I did have the surgery last Friday, and it was quite uneventful. The procedure itself is fairly easy, and I only spent like 6 hours at the hospital.
The days that have followed the surgery havent been as easy unfortunately. I have been quite tender at the surgical site, and laying down on my back is real difficult even now 9 days later. The IPG sits about 3 inches to the left of my spine and close to the midline of the back. Its basically impanted between the connective tissue or fascia, and the skin in a small 2 inch pocket created by the surgeon. That said, seeing that it sits close to the skin and the area is swollen from the trauma, it is quite painful! I also have an ache that developed from the 3.5 inch incision on my spine down to my right side lower back. Both of these pain points are mostly aggravated by pressure on them, so basically anytime I lay down or sit back on them they ache, and flare up...
One of the two silicone leads in the epidural space also moved about 2.0 MM lower.. Probably from me rolling over in my sleep. It is imperative whenever an SCS is implanted that the patient doesnt Bend, Twist or Lift more than 5 pounds for 6 weeks. It is very hard to get used to this protocol believe it or not. Trivial things like putting your socks on, or bending over to brush your teeth can put pressure on the leads and pull them out pf place from their anchors. Many people, myself included, roll around in their sleep. Unfortunately for me, I probably do it more than your average person(my wife tells me I toss and turn all night long unbeknownst to me!). All this twisting can easily cause the leads to migrate out of place and change all of the initial settings/programming that was done on surgery day by my Boston Scientific rep... the good news is the surgeons take this into account and they program extra long leads at their central points to give them a margin of error around the transmitting contacts. Therefore, even if a lead moves there is a decent chance that they can now reprogram the IPG to transmit off a new set of contacts. It gets much more complicated but that is the main gist of their rationale in using these 8" silicone leads. Also helping matters is that I have the new Precision Spectra system which just got FDA approval in the USA. This Infinion leads with this set up have 16 contacts each as opposed to 8 contacts each on the old SCS syastem, as well as a new computer chip that transmit 3D electromagnetic fields of impulse energy. If all that new technology fails because the leads move to much then they will have to go back in to redo my surgery and anchor the leads back down..
To sum it up, I have not really been able to use the new system this past week because I have been healing And the leads moved. I am going back in tomorrow for a reprogramming and a check up. I have a little fluid leaking from around my surgical site so my doctor wants to take a look at the stitches etc... I will keep posting here once I start using the system again. I will also be available to answer any questions since I am on 5 more weeks of medical leave from work.
Cheers
Matt
Neurostimulation Dr. in Ohio for PN patients
-
Thunderman69
- Posts: 53
- Joined: Wed Sep 26, 2012 1:56 am
Re: Neurostimulation Dr. in Ohio for PN patients
Symptoms started officially on Feb 21, 2012 w/no known cause! Multiple pain flares, ER Visits and tests (had 3T MRI in New York by Hollis Potter). Inconclusive MRI, but finally diagnosed with PN in 2013. Boston Scientific SCS implant surgery done on May 3, 2013.. SCS Implant no longer effective in relieving pain. Condition has deteriorated rapidly since a fall off a ladder in March 2014 (suffered trimalleolar fracture of right ankle). Surgery Consult with Dr. Conway scheduled for June 4. 2015.
Re: Neurostimulation Dr. in Ohio for PN patients
Thanks Matt for this account of your implantation procedure. I hope that your leads have not moved and hopefully the team can reprogramme you so that you get better coverage.
As for the healing it takes quite a while for things to settle down and Im sure you have been told this many times but the main thing is no bending lifting stretching or twisting for at least 3 months....it really does take a while for the leads to embed into the surrounding tissues. The other thing that is so important is to avoid water via a bath, pool for 3 months - you dont want to risk an infection. i was told to keep a dressing on for three months and that way the area was totally dry and free of infection risk. I know of two people who did not do this and they both ended up having to have the SCS removed and also several surgeries to remove infected tissue.
The site of your SCS is used for some people, others have it in their tummy. I wonder if a pillow under you at night may giv eyou a little more comfort and maybe one to stop you rolling over on top of the SCS.
Best of luck and let us know how its going as time goes along.
As for the healing it takes quite a while for things to settle down and Im sure you have been told this many times but the main thing is no bending lifting stretching or twisting for at least 3 months....it really does take a while for the leads to embed into the surrounding tissues. The other thing that is so important is to avoid water via a bath, pool for 3 months - you dont want to risk an infection. i was told to keep a dressing on for three months and that way the area was totally dry and free of infection risk. I know of two people who did not do this and they both ended up having to have the SCS removed and also several surgeries to remove infected tissue.
The site of your SCS is used for some people, others have it in their tummy. I wonder if a pillow under you at night may giv eyou a little more comfort and maybe one to stop you rolling over on top of the SCS.
Best of luck and let us know how its going as time goes along.
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: Neurostimulation Dr. in Ohio for PN patients
Thanks Matt for this account of your implantation procedure. I hope that your leads have not moved and hopefully the team can reprogramme you so that you get better coverage.
As for the healing it takes quite a while for things to settle down and Im sure you have been told this many times but the main thing is no bending lifting stretching or twisting for at least 3 months....it really does take a while for the leads to embed into the surrounding tissues. The other thing that is so important is to avoid water via a bath, pool for 3 months - you dont want to risk an infection. i was told to keep a dressing on for three months and that way the area was totally dry and free of infection risk. I know of two people who did not do this and they both ended up having to have the SCS removed and also several surgeries to remove infected tissue.
The site of your SCS is used for some people, others have it in their tummy. I wonder if a pillow under you at night may giv eyou a little more comfort and maybe one to stop you rolling over on top of the SCS.
Best of luck and let us know how its going as time goes along.
As for the healing it takes quite a while for things to settle down and Im sure you have been told this many times but the main thing is no bending lifting stretching or twisting for at least 3 months....it really does take a while for the leads to embed into the surrounding tissues. The other thing that is so important is to avoid water via a bath, pool for 3 months - you dont want to risk an infection. i was told to keep a dressing on for three months and that way the area was totally dry and free of infection risk. I know of two people who did not do this and they both ended up having to have the SCS removed and also several surgeries to remove infected tissue.
The site of your SCS is used for some people, others have it in their tummy. I wonder if a pillow under you at night may giv eyou a little more comfort and maybe one to stop you rolling over on top of the SCS.
Best of luck and let us know how its going as time goes along.
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.
-
Thunderman69
- Posts: 53
- Joined: Wed Sep 26, 2012 1:56 am
Re: Neurostimulation Dr. in Ohio for PN patients
Hi Amanda -
Thanks for the info! My doctors told me to keep the surgical site free of dressings after about the 4 th day post surgery. They told me their was no need to cover it while showering either.. I dont take baths, and I dont plan on swimming at all in the next couple of months. But I do wonder about the different opinion regarding covering from water. I will clarify this with my doctor tomorrow.
It is tough laying on my back. I can feel alot of pressure in that area right now as I lay on my back typing on my iPad. The suggestion of using a pillow is a good one. i will try it tonight! I did try it when I first left hospital but it hurt too much. Ack then... But I think now since some of the swelling went down it could be a good thing. Thanks again for your input its much appreciated!
Matt
Thanks for the info! My doctors told me to keep the surgical site free of dressings after about the 4 th day post surgery. They told me their was no need to cover it while showering either.. I dont take baths, and I dont plan on swimming at all in the next couple of months. But I do wonder about the different opinion regarding covering from water. I will clarify this with my doctor tomorrow.
It is tough laying on my back. I can feel alot of pressure in that area right now as I lay on my back typing on my iPad. The suggestion of using a pillow is a good one. i will try it tonight! I did try it when I first left hospital but it hurt too much. Ack then... But I think now since some of the swelling went down it could be a good thing. Thanks again for your input its much appreciated!
Matt
Symptoms started officially on Feb 21, 2012 w/no known cause! Multiple pain flares, ER Visits and tests (had 3T MRI in New York by Hollis Potter). Inconclusive MRI, but finally diagnosed with PN in 2013. Boston Scientific SCS implant surgery done on May 3, 2013.. SCS Implant no longer effective in relieving pain. Condition has deteriorated rapidly since a fall off a ladder in March 2014 (suffered trimalleolar fracture of right ankle). Surgery Consult with Dr. Conway scheduled for June 4. 2015.
Re: Neurostimulation Dr. in Ohio for PN patients
Matt
I hope with a soft pillow you will be more comfortable lying down.
As for the 4 days covering of the wound, I have to say I am shocked; bearing in mind that your scar is open and any infection is fre to travel down your leads and into your spine. Hopefully your doctors may rethink this idea. I would hate to have to have an explant because I left my wound open to infection....thats my honest opinion.
Hopefully you will be able to do more as time goes by and healing has taken place. I certainly wouldnt be without my SCS for any money. I go to Belgium in July for my Annual Check up and battery check - its been nearly 6 years since my first implantation, I hope that my battery will last the recommended 9 years so that I dont have to have more surgery just yet.
I hope with a soft pillow you will be more comfortable lying down.
As for the 4 days covering of the wound, I have to say I am shocked; bearing in mind that your scar is open and any infection is fre to travel down your leads and into your spine. Hopefully your doctors may rethink this idea. I would hate to have to have an explant because I left my wound open to infection....thats my honest opinion.
Hopefully you will be able to do more as time goes by and healing has taken place. I certainly wouldnt be without my SCS for any money. I go to Belgium in July for my Annual Check up and battery check - its been nearly 6 years since my first implantation, I hope that my battery will last the recommended 9 years so that I dont have to have more surgery just yet.
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.
-
Thunderman69
- Posts: 53
- Joined: Wed Sep 26, 2012 1:56 am
Re: Neurostimulation Dr. in Ohio for PN patients
Amanda,
I forgot to tell you a real important piece of information. My surgical wound was covered with Derma-Bond! According to my wife, this stuff is like a second "skin". I dont have any stiches or staples holding it together on the outside. I think this explains why my Dr. is so liberal with regards to surgical dressing... Sorry to confuse things!
You have to travel all the way to Belgium for a checkup!? Why?
Matt
I forgot to tell you a real important piece of information. My surgical wound was covered with Derma-Bond! According to my wife, this stuff is like a second "skin". I dont have any stiches or staples holding it together on the outside. I think this explains why my Dr. is so liberal with regards to surgical dressing... Sorry to confuse things!
You have to travel all the way to Belgium for a checkup!? Why?
Matt
Symptoms started officially on Feb 21, 2012 w/no known cause! Multiple pain flares, ER Visits and tests (had 3T MRI in New York by Hollis Potter). Inconclusive MRI, but finally diagnosed with PN in 2013. Boston Scientific SCS implant surgery done on May 3, 2013.. SCS Implant no longer effective in relieving pain. Condition has deteriorated rapidly since a fall off a ladder in March 2014 (suffered trimalleolar fracture of right ankle). Surgery Consult with Dr. Conway scheduled for June 4. 2015.
Re: Neurostimulation Dr. in Ohio for PN patients
Thanks matt for the clarification regarding your dressings, this explains a lot. I was only reminding you that any risk of infection is not good with an scs.
Yes I had my implantation in Belgium as it was not available in Ireland and in fact still is not for my kind of pain. I was referred by my pain specialist to go to see Dr Van Buyten in Sint Niklaas in Belgium as he is the top Medtronic implanted and would be my best surgeon. That was six years ago so every year I visit him for a check up, when my battery fails he will replace it. I have today booked my flights etc so I look forward to my visit and also of course seeing KRIS for our annual social catchup! I am very familiar now with the lifestyle of Antwerp and look forward to being there again.
I would be very nervous of having my scs replaced by anyone else as my medical history is in Belgium I am lucky to have private health insurance which will pay for any operations . My travel costs yearly are accountable by my tax system at an allowance but I need a reputable centre who will look after my medical needs so its worth the money for me. I wouldn't give up my scs for any cost!
Yes I had my implantation in Belgium as it was not available in Ireland and in fact still is not for my kind of pain. I was referred by my pain specialist to go to see Dr Van Buyten in Sint Niklaas in Belgium as he is the top Medtronic implanted and would be my best surgeon. That was six years ago so every year I visit him for a check up, when my battery fails he will replace it. I have today booked my flights etc so I look forward to my visit and also of course seeing KRIS for our annual social catchup! I am very familiar now with the lifestyle of Antwerp and look forward to being there again.
I would be very nervous of having my scs replaced by anyone else as my medical history is in Belgium I am lucky to have private health insurance which will pay for any operations . My travel costs yearly are accountable by my tax system at an allowance but I need a reputable centre who will look after my medical needs so its worth the money for me. I wouldn't give up my scs for any cost!
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: Neurostimulation Dr. in Ohio for PN patients
Matt how are you doing now?
Ray
Ray