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View Full Version : New interstim implant with lots of bleeding and pain



sweetpea2555
11-19-2005, 03:15 PM
:mad: Hi! I just had the interstim stage 2 done yesterday and I'm having lots of bleeding, bruising, swelling, and pain. I went to the ER last night because I was bleeding straight through the bandages they said to keep on for 48 hours-I was just bleeding all over everything. The hospital called my doctor and he said this is a common problem. They said I have blood collecting around the implant(they had a name for it) and my butt is very bruised and swollen. The ER doctor had to push on the implant for about twenty minuites to help the blood drain out because my bandages just kept soaking through. I'm on vicodinES every 4 hours for pain and I've been putting cold packs on my butt for the swelling, which isn't helping much but it helps a little. The hospital told me to call the doctor monday to have it checked again. Before surgery, the doctor promised this surgery is no big deal and when I asked how bad it will be all he said was it's just a little cut! I need to get back on my feet again :toilet: Is this really a common problem and if so does it last long? Does anyone have any tips to help cope? Please :help: I really wish I was warned this could happen, since it's so common. This is horrible and far worse than the trial. Thanks in advance for any tips or advice.

ICNDonna
11-19-2005, 04:23 PM
I'm so sorry you're having problems. By all means if you're still bleeding heavily, call your doctor again --- or make another trip to ER.

Donna

creatingkarma
11-19-2005, 05:15 PM
Yes. Please follow Donna's advice. I don't think you should be bleeding like this. I'll be thinking of you.

tigger_gal
11-20-2005, 04:00 AM
I think it would be good to see your doctor on Monday too... Just thought but are you taking asprin, ibprofin, elmiron? anything along that line that causes bleeding?
I have the interstim and never bled like that.. I was sore for a few days and had alot of bruising. please keep us posted on how you are, if you still cannot get painrelief from the vicodine and still bleeding like you are return to er and have them look at the incesion.
feel better soon.

Babs RN
11-20-2005, 04:03 AM
I haven't had interstim, but that doesn't sound right for any surgery. Hopefully you can get it looked at the the surgeon soon. If not, and the bleeding continues, I would think about going back to the ER.

Hugs,
Barb :grouphug:

sweetpea2555
11-21-2005, 10:58 AM
HI! I went to the doctor today and my bleeding slowed down but I still have blood stuck around the interstim in pockets that needs to come out and I have a very large burise. The doctor said that I am one of 2 patients with this problem(out of at least hundreds) :cussing: and it will last for about a month and a half and I was told to go back to my normal activities on monday but I will more than likely still be in alot of pain. My doctor's other patient had to have the surgery again to move the interstim and we are crossing our fingers that won't have to happen to me. I can't stand to ride in our truck so I walked home from the doctor. SO-I am one of the lucky few-now if we can try these odds with the lottery :rolleyes: that would be nice!
I"ll be praying for and thinking of the rest of you suffering with unlucky problems from interstim implant. Big Hugs to all of you :grouphug:

patricia1
11-21-2005, 11:16 AM
I have had two Interstim sugeries and I never bleed like that. Although for me the revision was rougher and harder than the first one. For that sugery the pain was worse and I was sore and hurting for about a month. And stiff OGM was I ever stiff. The next few days were rough with the stiffness. Keep an eye on that Interstim and make sure you do not get an infection. If you start running a fever, have more pain and say the where the interstim is feels hot to the touch go to the Doctor or ER. I hope you start feeling better soon.

KIM W
11-21-2005, 06:59 PM
I Am About To Have My Interstim Moved From My Right Hip To The Left. Any Advise Here. The First Time I Was Sore For Weeks So Assume This Will Be Worse, Having To Have It Moved Because Of Nerve Damage. Any Advise I Would Appreciate.
Thanks
Kim

Raelynn
12-07-2005, 03:34 PM
Sorry to report to the new device people, but I'm afraid to tell that you may find there is ALOT they aren't telling you!!! The "pockets" that form around the device are usually "hematomas"...I developed them with TWO of the Interstims...both of which had to to be removed and reimplanted. Of course, my Doctor told me this is very rare...I found out it is quite common...too late, though. Five surgeries later...and long periods in the hospital, in and out of the E.R. (where nobody seemed to know what to do but press on it, give pain meds. and tell me to watch for more bleeding and temperatures) from "complications" ie: infections, hematomas, bleeding, wound packings for 8-12 weeks with every excision...an extremely painful process if you have ever experienced it - you won't forget it - it's IS torture 3 times a day. I presently have the last Interstim device in and it has only worked well for a few months. Then the device starting "lagging" /not working at times....the Doctor THEN informed me that it is not unusual for the nerves to become "desensitized" to the stimulation over time and eventually not be effective! I almost FELL on the floor at this belated news, and let him know that I did NOT consider the very short time this device was in - what anyone would call "over time"!!!! The longer the device is in the less effective it is, the more problems (neurologically) I am developing....nerve pain, numbness, pins and needles very bad in both legs, transient shocking, etc. etc. IF ONLY I HAD KNOWN THE WHOLE STORY!!!! We also won't mention the outstanding bills incurred in 1 year and I am in collection like crazy for what insurance didn't cover. I will never get out from under that either. I am now at the point where I am too AFRAID to leave it in and too afraid to have it out....every time they took it out - it was a worse experience - the last one wound up with a whopping 8 days on the morphine drip still crying in the bed and screaming through 3 wound packings a day! I have NO idea why so many Doctors are outright lying to the patients about this being "a simple one day surgery" with a short recovery! I was TOTALLY INCAPACITATED FOR A YEAR from this "simple one-day surgery"....which, by the way - was never a one-day deal! I pray for all of you (and myself!)....the Interstim is one of my worst nightmares to this day!

ICNDonna
12-08-2005, 04:05 AM
Unfortunately, I have heard stories like yours several times. I'm so very sorry you have had this experience with interstim.

I have made a decision that if I ever consider this type of device, I will insist that I get an agreement, in writing, from my physician that if it creates problems it will be removed at my request.

Somehow it seems that the manufacturer should be accepting some liability here.

I hope your situation will be resolved soon.

Warm hugs,
Donna

patricia1
12-08-2005, 04:28 AM
I am so sorry you are going through this. I got my first Interstim in 2001 and had a revision done this past May. I have now found out only the 2 leads that are implanted the deepest work right for me. I have had problems with the first and now this one. It is very upsetting for those who have had problems and no one wants to help us. It is a sad shame. I hope things work out for you...

ICNJess
12-08-2005, 06:08 AM
Wow I am sorry Raelynn for all the problems you had. Unfortunately doctors just aren't totally up front about the InterStim. I don't know if it's lack of knowledge, or if they are getting kick backs from Medtronics or what. It burns me up that we aren't told up front so much that we have a right to know. I personally am looking forward to having mine removed, and when it does get removed, I may just shout it from the rooftops.

Hugs,
Jess

Raelynn
12-08-2005, 06:08 AM
Thank you Patricia! I appreciate your response to my post. Sorry to hear that your experience wasn't what it should have been either. I think that must be way more common than anyone at medtronics or the medical field is willing to acknowledge - that's why I get so frustrated! I feel very cheated and lied to about the whole Interstim experience and I know I am not alone. I was never told ahead of time (and I did not have a computer back then) that there are "alternative therapies" for incontinence/retention...because I would have been more than willing to try those before going this route. I can't help but wonder if biofeedback or one of those therapies would not have helped the problem at least. I only found out about those avenues after I had all those surgeries and found out about them on the computer. I was already disabled prior to the Interstim - but am even more limited since. I have had it "adjusted" more times than we can count with no improvement. Now, like you, I just try to get through the days as best as I can. God Bless You for responding, Patricia and you will be in my prayers! Feel free to write me anytime, by the way...we can use all the support we can get, right?

Raelynn
12-08-2005, 06:19 AM
Jess, GOOD FOR YOU on getting it removed! I hope I can get enough "nerve" (haha!) to get this one removed too.....but after what I went through the last time, much has to be arranged ahead of time. These are things I learned the hard way the last time and almost had to go to a rehab center for a couple of months after, and I had nobody to take care of things at home (dog, bills, etc.). By the last removal - I was hospitalized for 8 days, needed 2 mos. to even be able to take care of the little dog I have, let alone myself. I have no relatives and the visiting nurses only came for "wound packing", then left. It was a much bigger deal than I would have guessed every time they took one of the devices out. I pray that you do not go through nearly the involved recovery as I had to when they took it out...but have your ducks in a row in case. Hopefully, you have family to help care for you after the removal. I did not and really did not want to go to a nursing home/rehab. afterwards. You are smart to have it removed and I will too when I can make arrangements here for afterwards. My thoughts and prayers are with you....write anytime, by the way! Thank you so much for responding, Jess!!!

ICNJess
12-08-2005, 08:38 AM
Hi again Raelynn! I originally wanted my stim removed earlier this year but the doctors wouldn't remove it. So what they did was try to move it, but it migrated. Then the doctor consented and said it had to be removed. I'm going to have it done after I give birth...but I gotta say, I'm really not looking forward to yet another stim surgery, ya know?? I hope you can get things lined up that so you can get yours removed, too!!!

Hugs,
Jess

Dixiefireball
12-09-2005, 11:29 AM
My heart breaks to hear stories like this. I'm so very deeply sorry you are suffering so and can't find a Dr. to help you get it removed. I feel its only right if a Dr. is willing to put it in you they should be willing to take it out upon a patients request. its a personal choose if you want it its a personal choose if you want it out and those wishes should be granted!
my Dr. spoke to be briefly not to long ago about getting this interstim and told me that 30% of the patient in that office had reported both relief from urg/freg and pain. I told him I had read enough stories over these years to not want this in my body. My body already reject so many medicine and latex why would i want to risk to but a device in my body. the only way i would put something in my body like this is if I was going to die! like a pacemaker or something like that.
I really wish i had some words of wisdom to help you and others but all i can do is stay I will say a prayer for you and pray that you get the answers you are looking for.
sending you hugs and prayers.
Rhonda

Raelynn
12-10-2005, 09:13 AM
[B][I]Dixiefireball:
Thank you so much for both your prayers and words of encouragement! Both are greatly appreciated! SO smart of you to not allow them to do this to you....and I have to tell you that I suspect they are not "telling the whole story" with those percentages and would have to question - for how long did they get relief/improvement before the device had to be removed/moved or failed. I know that in my case they ONLY recorded the first couple of weeks (prior to rejection, etc.) when the device seemed even to me, to be a great thing. Even the device that is presently in...seemed to be a great thing for a month or two until it started "lagging". As you can imagine - it is not worth it to go through all of this for a very brief success time. I would be curious about the percentages of success with the device over a 6mos. to 1-2 years time. So smart of you to be leary about it - if I had access to a computer before starting this mess - I sure wouldn't have one either. There was so much they either neglected to tell me or made sound different from the truth, that I would be writing half the day to tell you. By the way....if you have an Interstim device, I did read that you can't have a pacemaker at the same time anyway (I mention this as I have heart trouble, but fortunately do not need a pacemaker!). I had no idea how involved this was going to turn out to be or I would have ran out of that Doctors office when I had the chance! I am also going to take this opportunity to "speak out" about how unfair I find it that when I have posted specifics on here about exactly what has happened to me with this device - I FIND THAT MY POSTINGS ARE GETTING DELETED! The hurtful part of this, is that everyone else's seem to stay on the boards. I noticed that you are a "moderator" - have you had instances of this in the past? It is bad enough that the Doctors aren't listening....and I had been so hopeful that when I finally found this site - I would at least find some place to share my experience honestly. Please don't take this personally, as I AM very grateful that YOU responded (along with Patricia and a couple of others) before the posting was deleted. I am pretty stubborn and will continue to repost anything that gets deleted - am copying them now to repost if necessary. I am totally disabled and unfortunately have PLENTY of time to do this, but it does explain why I did not see more postings like mine on here. It makes one really WONDER.....
I DO HOWEVER REALLY APPRECIATE THE SUPPORTIVE RESPONSES I HAVE GOTTEN, and I don't want to make light of those, for sure! Write anytime....I can always use all the support I can get - especially now! GOD BLESS YOU!!!

Katrina
12-10-2005, 09:51 AM
Raelynn, I am sorry you have gone through so much with these devices. I guarantee you that it is not a personal thing when a moderator deletes a post.

It frustrates me a lot when I read some of the problems with these devices that could easily have been avoided.

I have an implant for my Epilepsy. For me to qualify for the implant I had to not have heart trubble because of the fact that I couldn't have both devices at once. It seems to me that should be a rule for all implants. I ended up developing heart trouble later but that is separate issue.

My heart aches for all that have had major troubles with their implants. I have an idea of what that is like since my implant turned out to give me major side effects that were very unique...my doctor at the time abandond me and would not admit the symptoms I was having was because of the implant...my new doctors since all have as did the company that makes my implant...So why that doctor abandond me and ran is very suspicious to me. It makes me angry just thinking about it.

Believe me please when I tell you, I understand how hard it is when an implant gives you problems. I was lucky, things could have been a lot worse. I CARE!

May God bless all with devise failure....:grouphug::kissing:

Raelynn
12-10-2005, 10:45 AM
KATRINA: Thank you so much - I really appreciate it! So sorry to hear about the Epilepsy implant (have heard of them, too, actually - blessed to not have Epilepsy!). It is VERY disheartening when we are "put-off" by the Doctor's we have trusted. I will keep you in my prayers too! I can see why you are a "super-moderator" - great job! And thanks for responding so quickly to my post! God Bless You!

Katrina
12-10-2005, 10:58 AM
Thank you Raelynn, that means a lot! :)

Raelynn
12-10-2005, 11:02 AM
TRACY C:THANK YOU SO MUCH FOR RESPONDING & UNDERSTANDING! I was beginning to wonder if I was on a Medtronics site or a site owned by a Medtronics empoyee..haha! I did find out they are NOT connected, but it was one of the first things that came to mind! I did come to this site because I need support and understanding....and I have to be able to be honest or why bother, right? After all, the title on this thread IS "device failures/problems"....doesn't EVERYONE on this thread wish they were able to post on the success one? I do! So sorry to hear that you had the same experience. Please know that I would love to hear from you anytime you need to talk. I was feeling so incredibly alone for so long...all through all these surgeries/problems and pain. I was so grateful to finally get a computer and look for support - somehow. I'm sure you know how tough this can get. I am blessed with many friends, but it's hard for them to understand not having any of these health issues. I have had the pleasure of chatting with Dusty (FANTASTIC PERSON!!!). She is a God-send to this site as you know. If one person gets something out of a post from me...it will be worth it. I know I'm grateful to have heard from you and Katrina today!

Raelynn
12-10-2005, 11:56 AM
TRACY C. - I only want to talk to nice people too! Haha! Mean people ....! They even have a bumper sticker for that! I like the little "laugher" you put on there too. I will definitely write to your e-mail. Mine is: lynnrae232000@sbcglobal.net by the way. You are right - we need all the support we can get. So grateful to have Dusty and now you too to chat with....it has been a long, lonely struggle to get her, for sure! Thank you so much, Tracy!! I, too, have unlimited calling from home (will include phone in e-mail!). God bless you for responding to me as you have!

Dixiefireball
12-10-2005, 04:28 PM
Raelynn,
I'm sorry if you misunderstood. I don't have the interstim. I am greatful I never have had it, but I was lucky to have a computer and people here on the ICN who warned me that they didn't think it was right for me. They told me it was only for urg/freg, Thank God the first time i was looking into this My urg/freg wasn't my main problem. it was PAIN! The pain clinic Dr. tried to tell me that I had to have it or I didn't want to help myself i wanted to suffer. I came here and ask for advice that is when i was told IT WASN'T FOR PAIN, and If i ever decided i wanted this that I needed to have A LOT OF TIME AND RESEARCH in this before i took that step. It should be done before I took such a big step. However so many people out there DON'T have the internet or any other soures to find this out. We want to trust in our Dr. so much and get a quick fixs we go ahead and let them do this to us.
I know of two people here who has had a success with the interstim One has had it for many years (sorry I don't know how many years) and another lady who has had it a year or a little more I believe.
Even with the Sucess stories I've read MORE horror stories. which out weigh the others as far as I've seen.

I learn something new all the time by reading stories like yours. Stories like yours and many others here remind me that the danger are to high for me to risk such a surgery and device being implanted in me.
I spoke of the pacemaker because of all the reaction I already have to so many other things saying that the only way I would have something implanted into my body was If my life was on the line.
Everyone stories here has saved me from taking such a huge step in my life. for every story i read I;m thankful for the warning but yet my heart aches for all of what each of you went threw to save me and many others. I thank you for sharing your stories.
I just wish I knew of a way to help each and everyone.


Sending you hugs and prayers
Rhonda

Cheries
12-10-2005, 06:49 PM
Raelyn-Thanks for your honest and forthright comments on your experience. I was considering this seriously after going to the doctor and having her insist it was "no big deal" and can be taken out right away if the trial doesn't work then no problem, we just don't do it yad yada yada! I felt she sugar coated everything and wasn't being very forthcomming. I told her I wanted to research it more as I heard it wasn't for pain and this is my chief complaint. She said that she has done 2 of them (Don't think she would be my first choice with only a couple under the belt, although I really don't know her statistics. I really have never felt this was for me. THANKS for saving me from problems!! I am going to look into all of this much more before I ever take that step and it is doubtful I will.

patricia1
12-12-2005, 05:37 AM
Cheries alot of times the doctors do sugar coat this procedure. They also tend to sugar coat problems once they arise. The doctor who did mine kept telling me my problems where normal. But they were not and it took me 8 months just to find another doctor who could help me.

Please dont let the tell you this device is for pain. It is for urgency and freq not pain. Although a small few have been help for the pain problems, but the norm its not true. Exp if pain is your chief compliant. Also if she has only done 2 I would not be to willing to jump on her train. I did this the first go around I think I was his 3 one he did. My revision lasted an hour longer because of the way he attached the wires to the nerve. I am still not having good luck with my revision.

While there are some who have good luck there others that have not. I always say when considering this look at not only the short term but the long term vets. Think about insurance in the future and if you have problems and no insurance can you afford to fix it. This is what happened to me, because I lost my health insurance he wanted nothing to do with me. This surgery is still realtity new. In fact my 2nd one was done at a teaching hospital here in Louisiana. And teaching hospt on up on everything right, well I was the first one they had done at that hospital.

Cheries
12-13-2005, 05:09 PM
Thanks so much for your response. What part of Louisianna are you from? I am from Texas and we have had a large influx of people from Louisianna following the storm.

Well, I am going to print out a bunch of things from the internet and take them to her regarding this. The main reason I have never considered it is due to the research. It is possible that the varied response is due to the fact that we all respond so differently to things as well and the expertise of the doctor is a number one concern as far as I am concerned. I feel very frustrated right now with the doctors I have.

mallenajolie
12-14-2005, 03:11 AM
Its these type of stories that would make me not want the interstim. I know my doc would not hesitate to take it out if he needed to or I requested it(know people who he has taken it out of), but all the suffering in between. I am just so grateful I have the doc I do, and he doesn't push this type of activity. Maybe because we both have cats? Or that I brought him some cat toys..just kidding.

patricia1
12-14-2005, 04:31 AM
Cheries I live in the Northwest part of the state. I live about a hour south of Shreveport near Mansfield.

tigger_gal
12-14-2005, 04:40 AM
mallenajolie he has a cat? lol that I didn't know. and I do agree if I went in and said hey, take this out I don't like it any more, he would schedule surgery.

I feel bad for you all that has had such a hard time with interstim procdures. You know how your body feels and they should not hesitate to remove it.. its not like a pacemaker that you need to have to live.. I hope things get better for you.