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My experience with InterStim
I want to share my experience of InterStim with you. Not about how my doctor did the procedure or if I am a success. It is about my emotional up and down and struggle in the past 4 months.
As some of you know that I am in the InterStim clinical trial here. I am not as lucky as some of you who can ask the doctors how many patients he/she has done. My doctor has never done InterStim before. But the Medtronic rep told me my doctor has finished the training program. Besides, I had checked with a neuro doctor in my church. He said my doctor is an experienced surgeon and I can trust him. My first surgery was done on 10/22/2003. It was a staged trial which required a surgery and overnight stay at the hospital upon my doctor’s request. My husband said he was in the waiting room for 5 hours (from 6 pm to 11pm). I didn’t know anything about the surgery because they gave me a full anesthesia. I woke up feeling sore in my back. I was so tired and scared because my eyes were hurt so much that I couldn’t open them. After the eye doctor checked my eyes, I was sent to the regular patient’s room where I cried out asking my hubby to take me home. The next morning, I felt better from the side effect of anesthesia. My doctor and the Medtronic rep came and told me and my hubby the surgery was successful. Then I was sent home with a box hooked on my back.
During the one-week test period, the Medtronic rep called me every day to see if I was doing OK. Actually my doctor called me twice at home asking me to continue the antibiotic treatment for the surgery. He was very nice to me and said a lot of encouragements. I personally think the support from a physician is also important in InterStim treatment.
My frequency went down from 18-20 times a day to 11-12 during the trial. I didn’t think it was a big improvement because I was able to go below 12 times in good days before InterStim trial (though my good days were about 4-6 days a month). I had to admit that I hesitated when it was time for the permanent implant. I was only allowed to have a week’s trial so not given enough time to think about it before the second surgery. Both my doctor and the rep thought the trial was a success. They didn’t persuade me to have the permanent implant, but I felt I did so to meet their expectation.
My second surgery was on 10/31, about 10 days after the first surgery. It is not easy for anyone to have two “open” surgeries in such a short time. When the doctor injected the anesthesia into my arm, it was too painful and I couldn’t take it so I cried out. The doctors and nurses were shocked by my response, fortunately the anesthesia kicked in in a few seconds and then I fell asleep again.
The second time I woke up with more pain on my back. I was sent home the next day. My stimulator was turned on the same day. I guess Medtronic wanted to see the results as soon as possible. My recovery was not bad because I was able to take a train to work after 10 days. However, I didn’t see any improvements for my frequency. I still peed a lot, sometimes up to 30 times a day. I was starting to wonder if it had made my frequency worse. I was so nervous and anxious cause every day if I went twice in an hour, I thought it was not helping. My parents called asking if I did better after the surgery. I didn’t want to lie to them but didn’t want them to worry about me so I just told them I was OK. This kind of stress came not only came from my parents and spouse, but also from my doctor and the rep. I knew that I had to be a success so they could get InterStim the permission to be imported to my country. I had a lot of stress and didn’t know how or where to relieve them. It was such a big burden for me because every day I was thinking if I made the right choice. I kept asking myself I did the right choice. My friends told me if it was not working, I had nothing to lose. I didn’t pay anything for the surgery or the device. However, the emotional stress was as much as the financial part if I had to pay.
I know some people with success said they would definitely do it again without a second thought. If I know it would turn out to be a success, of course I would sure do it again. However, InterStim is something that you have to try yourself or you won’t know if it is going to work on you (seems like every treatment is the same, right?). I just want to suggest those who want to try this treatment. When you are doing the research of InterStim, also ask yourself if you can take it when it turns out to be a failure. I know we all want it to work so badly. In fact, I even told my doctor and the rep that I wanted it to work more than they did. I am sorry for those who are not helped by InterStim. I know how you feel because I went through 4 months without seeing any improvement. I wish you the best in finding the answer to your problem.
Sorry for the length of this article. Just want to respond to Jess' post, more experiences, less opinions.
As some of you know that I am in the InterStim clinical trial here. I am not as lucky as some of you who can ask the doctors how many patients he/she has done. My doctor has never done InterStim before. But the Medtronic rep told me my doctor has finished the training program. Besides, I had checked with a neuro doctor in my church. He said my doctor is an experienced surgeon and I can trust him. My first surgery was done on 10/22/2003. It was a staged trial which required a surgery and overnight stay at the hospital upon my doctor’s request. My husband said he was in the waiting room for 5 hours (from 6 pm to 11pm). I didn’t know anything about the surgery because they gave me a full anesthesia. I woke up feeling sore in my back. I was so tired and scared because my eyes were hurt so much that I couldn’t open them. After the eye doctor checked my eyes, I was sent to the regular patient’s room where I cried out asking my hubby to take me home. The next morning, I felt better from the side effect of anesthesia. My doctor and the Medtronic rep came and told me and my hubby the surgery was successful. Then I was sent home with a box hooked on my back.
During the one-week test period, the Medtronic rep called me every day to see if I was doing OK. Actually my doctor called me twice at home asking me to continue the antibiotic treatment for the surgery. He was very nice to me and said a lot of encouragements. I personally think the support from a physician is also important in InterStim treatment.
My frequency went down from 18-20 times a day to 11-12 during the trial. I didn’t think it was a big improvement because I was able to go below 12 times in good days before InterStim trial (though my good days were about 4-6 days a month). I had to admit that I hesitated when it was time for the permanent implant. I was only allowed to have a week’s trial so not given enough time to think about it before the second surgery. Both my doctor and the rep thought the trial was a success. They didn’t persuade me to have the permanent implant, but I felt I did so to meet their expectation.
My second surgery was on 10/31, about 10 days after the first surgery. It is not easy for anyone to have two “open” surgeries in such a short time. When the doctor injected the anesthesia into my arm, it was too painful and I couldn’t take it so I cried out. The doctors and nurses were shocked by my response, fortunately the anesthesia kicked in in a few seconds and then I fell asleep again.
The second time I woke up with more pain on my back. I was sent home the next day. My stimulator was turned on the same day. I guess Medtronic wanted to see the results as soon as possible. My recovery was not bad because I was able to take a train to work after 10 days. However, I didn’t see any improvements for my frequency. I still peed a lot, sometimes up to 30 times a day. I was starting to wonder if it had made my frequency worse. I was so nervous and anxious cause every day if I went twice in an hour, I thought it was not helping. My parents called asking if I did better after the surgery. I didn’t want to lie to them but didn’t want them to worry about me so I just told them I was OK. This kind of stress came not only came from my parents and spouse, but also from my doctor and the rep. I knew that I had to be a success so they could get InterStim the permission to be imported to my country. I had a lot of stress and didn’t know how or where to relieve them. It was such a big burden for me because every day I was thinking if I made the right choice. I kept asking myself I did the right choice. My friends told me if it was not working, I had nothing to lose. I didn’t pay anything for the surgery or the device. However, the emotional stress was as much as the financial part if I had to pay.
I know some people with success said they would definitely do it again without a second thought. If I know it would turn out to be a success, of course I would sure do it again. However, InterStim is something that you have to try yourself or you won’t know if it is going to work on you (seems like every treatment is the same, right?). I just want to suggest those who want to try this treatment. When you are doing the research of InterStim, also ask yourself if you can take it when it turns out to be a failure. I know we all want it to work so badly. In fact, I even told my doctor and the rep that I wanted it to work more than they did. I am sorry for those who are not helped by InterStim. I know how you feel because I went through 4 months without seeing any improvement. I wish you the best in finding the answer to your problem.
Sorry for the length of this article. Just want to respond to Jess' post, more experiences, less opinions.
Not to say that it's right, no surgeon should practice unless he truly knows what he is doing!!! Responsibility lies on that of the doctors.
back Peiti! Thanks for the update!
Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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