Given that some people won't want to risk surgery (which has a failure rate). What about these other options?
Done some more thinking. David, how much kbetter would you say you are at this point compared to pre-surgery? I know you are still recovering but I remember Elliot saying that he was something like 70% better after it seems to me about 4 weeks. Am I right? I went on the other group's discussion and there was a woman who had had surgey with Filler and she was 2 months from surgery but still seemed to be having lots of discomfort. I guess I am trying to kfigure out how much of a recovery I should expect. I live alone and I don't know how much help your wife was when you were just home.
Donna, how are your incisions now?
This really is a big decision. I was relieved to hear that people on the other website had had this PS pain even longer than I have. One said that Dr. Filler has done about 200 such surgeries--lots considering that he also does other peripheral nerve surgeries. What is he like personnally?
Thanks again. Don't mean to overwhelm with questions--just tryingto sort out in my mind all aspects of this decision.
Shirley
I'm also very interested in David's path of recovery because I also live alone and am trying to gage how long I'll be unable to work, etc. after surgery. I'll have help right after but I don't want to impose on too many people for too long! I drive A LOT for work so I'm guessing this might be a problem. I've seen Dr. Filler twice, once for consultation and once for injections. He is very nice, focused on what he is doing and seems willing to spend as much time as you need to answer questions and explain things. I think he has a sense of humor but I'm not sure!!! Like I said, he's pretty focused which is good. I'm freaked out about the costs as well. I have Blue Cross and really only "catastrophic" coverage so I don't think much will be covered and what will be will be a small percentage. I'll have to deal with that when it comes. I'll probably be calling upon David for his experience with his ins. co. I have that kind of coverage because I NEVER get sick....go figure. I can't begin to imagine what it would be like to deal with this for over 4 years. My heart goes out to you. It's been around a year and 4 months for me which seems like a lifetime to be in pain. I'm 44 by the way (but feel like I'm 144!!)
Take care and hang in there,
Leesa
I'm 47 if that helps. I was also wondering about the Cedar imaging bill. No, it is not from Filler's office. I think it is the imaging/scope he uses during surgery. I am the Manager of Engineering for a natural gas company so it's a combination of sitting and moving. My physical stuff I used to get through working out and life around the yard, bowling, tennis etc.. Not too much of that over the last 6 months.
Do not worry. I will keep everyone up to date on my recovery. I'm determined, as a result of this experience, to help others with this. I'm going to stay on this board and spread the word through my local medical community.
To the largest extent, it's hard to say how I feel post surgery vs. pre-surgery because of the surgery recovery. There is no doubt my right leg has improved. My left leg is still causing me some discomfort but I was told that it was far worse(lots of tissue on the nerve that had to be removed) so this will take a while. I'm hopeful because sometimes I feel great. Sometimes, not so great but certainly not worse.
I think Elliott was 3 months post surgery and 70% better.
Yes, LOL, I feel surrounded by estrogen. Where did the men go?
My wife has been an ENORMOUS help. I am a very fortunate man and I don't take that for granted. Count on needing some help from a spouse or a friend or a family member unless you are WAY tougher than me.
Nervepain threw me too but everyone is different.
2-3 hours is for one side. My surgery was both sides and it took 6-7 hours.
We like Dr. Filler personally. He is kind of quiet but very professional. He is never on time as he is thorough and will answer questions until you have no more. Everyone, from his staff to the pre-op ward mentioned and laughed about how un-prompt he can be.
Hope that answers everything from my perspective.
It is a VERY difficult decision. Been there, done that. You should be worried about yourself if you weren't struggling with the decision.
Have a great day.
David
I'm most likely only having one side operated on. I know you had both sides done so maybe you can't really answer this or even give a good guess....but I was wondering how much time after surgery would I expect to need someone around to help with everyday things? A week, or two or three? My mom can come out here for as long as I need but just was wondering. Have a good day.
Leesa
A post on the yahoo group gave insight into the differences between what Cedars Sinai quotes and what the charges seem to be. The quote, evidently, is a discount price for self-pay patients, while the higher charge is what they charge for patients with insurance.I've not checked into that, but that's what the poster said Sheila told her. My company negotiated about $20,000 off the bill and then paid their 80% from there.
I will certainly agree with David that the price paid is well worth it to have my life back.
You will probably have surgery on a Tuesday and have a post op meeting with Filler's NP on that Friday. You will need someone with you 24/7 until you return home.
Once home, you will at least need someone to check in on you 2-3 times per day. Things like showers, dressing, etc. are not excruciating but I needed help from my wife. You are going to be on and off your feet a a lot during the first week home but most things you will be able to handle but remember that lifting anything above about 5 lbs is not going to be encouraged. You will figure it out with Filler's instructions and common sense.
From there, it depends on your progress. I'm 4 weeks post op and my wife still helps put on my socks and lifts anything heavier than about 10 pounds. Everyone is different but we recommend that you have someone, even out to 3-4 weeks, a quick phone call away.
Let us know if you have any other questions.
David
I wish I had someone to help me put my socks on NOW, some days that is difficult!! :)
I'm local (Dr. Filler is about 15 miles away from me) so that's a good thing. I have a friend to stay with right after and now that I have this info will probably stay with her until after my follow up then go home.
You've both been great, thanks again. Take it easy.
I still think I have all of you beat with age. I am a very young 65 so I could probably be everyone's mother. However I have been very active all my life and have kept in good shape until this happened. I continue to stretch every night for abot 30 minutes and I do light weights for upper body strength and a quad strengthening exercise. But like the rest of you I have had to give up treadmill and workout, cycling, gardening, hiking and just good solid walks. Sometimes I can manage about 25 minutes with manageable pain but other times even that causes severe burning down my leg and a stabbing in the butt. Like you Donna, I have gained weight, about 15 pounds because of lack of exercise. I hate it as I have never had problems with kweight.
I was relieved to hear that the lower fee forCedars Sinai is for self paying patients because that is what I would be. I have been turned down by my provincial health insurance plan for out of country coverage.
And Leesa thanks for your commiseration re: how long I have lived with this. Actually it has been since 1998. It is just that I found someone in Canada who would do the botox injections 4 years ago. I don't recommend that anyone live with it for that long as I also suffrered through a major depression as a result of this lengthy period wiht chronic pain. I am good now and have found mindfulness meditation a big help along with a very supportive physiotherapist. I listed 4 pages worth of things I tried including yoga, pilates, feldenkraise, chiropractic, osteopathic, global postural reeducation, Tai Chi, acupuncture, theraball pilates, physiatry. The list goes on and on. My doctor told me she had never had a patient who tried so hard to help herself. I only found out about Dr. Filler on the internet last spring because I was constantly searching the internet for answers. But, Donna and David are right, livingwithout this pain is worth a lot. I am retired and live mostly off my investments which are 50% US and with the US dollar down against the Canadian dollar I am down about $165,000 since the US dollar dropped. I have a small pension because I left the hospital t do private work. So my investments must last me the rest of my life which I would like to be as pain free as possible.
But thanks for understanding thestruggle with the decision, David. As my daughter says, if I don't do it I will be wondering why I didn't for the rest of my life.
I am 95% sure that most of my pain is caused by the piriformis but there is always that doubt.
Anyway, thanks to everyone who shares your story and listens to mine. Maybe we will all meet someday.
Great that you are both back at work. In spite of my pain I do lots of grandmothering and when I am tired I just role around oon the floor wiht them.
Leesa, good luck to you and kep us informed. You are lucky to live so close. I think it will take me at least 5-6 hours to fly from eastern Canada, like you Donna.
Thanks so much again. I will let everyone know when I get up the courage to make my appointment.
Bye for now.
Shirley
Shirley,
Good luck with your Pain Clinic and keep rolling around the floor with the grandkids! If you ever decide to come out here and need help with finding a place to stay or getting around, just let me know.
Leesa
Please know that you are in our thoughts and prayers. These are not idle words, they are sincere and true.
My wife said she is going to post further regarding support needs. I hit a grand slam when she decided I was worthy of spending the rest of her life with me and she has been tireless in her support, her patience, her encouragement and her help. As bad as this whole episode has been on me, it has to be far worse on the people that love you who aren't feeling the physical pain but are forced to suffer through the emotional pain of watching someone they love struggle. It will take my entire lifetime to make it up to her BUT I will.
I have some questions for Donna. First, I'm so glad things are improving with the infection and I have no doubt this bump in the road will be over soon.
1. I've noticed that my post surgery aches and pains can change/switch from minute to minute. I've also noticed that this is a complete function of spasms in my buttocks. For example, we just had a cold front. I felt fine while inside but I walked out, got chilled, and I could literally feel the right
upper buttock just ball up and I had pulling and pain in the right GT joint. Then I went back inside and it released, and the pain went away. I could list more than a handful of these types of variations. Does this sound familiar to you?
2. I'm trying to be smart in my physical therapy(walking). I am extending my walk each day by one house down the street(these are large lots - 150 feet wide). I'm a little shaky by the time I return to the house and that's kind of a measuring stick as well. Go until I'm shaky. Generally, when I finish I feel better than when I started because I think I'm relaxing the buttocks muscles by the exercise. However, I don't want to overdo either which I'm guilty of pretty often. You said you you had extended to 2 miles a day. Do you think your aggressiveness had anything to do with your incision problems? Based on your experience, how hard should I push these limits?
3. I'm doing very light back strengthening and stretching. The stretching consists of standing and lifting one leg and placing my foot on a chair and I keep using taller and taller chairs. It feels great because it seems to stretch my buttocks on the side that I'm lifting. Sheila said no stretching for a couple of months but I've just got to think that the tighter I become, the more problems I'm going to have. How much strengthening and stretching are you doing and did Sheila ever provide a more detailed/formal rehab plan?
Sorry for the long post folks. Sincerely hope all is as well as possible and keep your chins up.
David
As far as negotiating fees with Dr. Filler and the hospital, is this done after surgery or before? I've never had any major medical bills so just wondering how it all works.
Thanks to whoever knows the answer.
David: I know what you mean about friends and family suffering as well. No one knows what to do for or with me either! I'm just glad you have great support from your wife. I'm lucky as well with a great group of friends and family and I'm grateful for that.
Leesa
I agree that is has got to be harder on the spouse. My husband spent tireless hours taking me to the doctor and PT (two hour drive one way, which I couldn't do myself) then came home and tried to keep up with his work AND mine as well. Never complained in the middle of the night when I needed a pain pill, or hot pad or just a hug. He's wonderful and I thank God for giving me such a great guy. We celebrated 28 years of wedding bliss last week!
I recall the post surgery aches moving around a bit but I don't seem to remember specific muscular spasms. That part doesn't really sound familiar to me.
Second, I have wondered if the infection was caused by overdoing after surgery, but both the surgeon here and Sheila said that is not the case...its just pretty random and the surgeon said its "bad luck". I had a small episode of drainage two weeks post surgery and I wonder if it just didn't clear up well then.
I don't really feel like I've been over doing or even been aggressive in returning to activities. I know it may sound like it, but I've been very careful to follow Sheila and Dr. Filler's instructions exactly. I do not want to undo anything that the surgery has done, so with that much at stake I've tried to be very careful. At the 6 week phone call, Dr. Filler said I could slowly increase walking to whatever extent I felt comfortable. the first two weeks I walked very slowly, working up to 30minutes, following Sheila's instructions. I've also listened to my body and I've not experienced the shakes like you mentioned or additional pain following walks. Not to mention that my wonderful husband has been very carefully monitoring my activity and won't let me go overboard. This is one place where we really can't compare ourselves or our recovery. Your surgery was longer and more involved than mine so I would imagine recovery should be harder for you.
If you are going until you feel shaky that sounds far enough to me. Push a bit, but not until you feel pain. From what you've written you know how to listen to your body, so let it be your guide.
I haven't heard anything more from Sheila about strength training or stretching. As firm as she was about not starting anything until 3 months post surgery, I've not done anything in that area. I am planning on bringing it up again this month....2 weeks til the 3 month mark. I don't remember when the next scheduled phone consult is supposed to be, but I'll be in contact with Sheila soon to give her progress on the incision.
Leesa, don't worry about asking questions one at a time. Keep asking as they come up and I'll try to do what I can to answer them.
I didn't negotiate fees or payment plan ahead of time since I had information that my insurance was going to pay far more than it has. We're still working on that, but once that's finished, I'll have to talk to the office to see what can be worked out after the fact. I know I signed the contract so we'll do what we have to do to keep our end of the deal and be thankful for what we can do. Sorry I can't help much more here, but this is one area I'm still wading through myself.
Donna
Leesa,
Great question. I never had any major medical issues either other than those associated with loved ones where I stepped in to help on their behalf.
I would not negotiate before hand. Let them file your insurance and see where you stand. I say this for two reasons.
1. That will be any providers response. It would be what I would tell you if I were your provider.
2. You need to be treated and it's a different world. Don't give anyone a reason to know that they may not get their money immediately. Having said that, they deal with this issue every day so it will come as no real surprise. I'm not saying be dishonest(never), I'm just saying you have the maximum amount of leverage after treatment. LOL, I didn't say much leverage, I said the maximum amount.
Dr. Filler's fees are not negotiable. In other words, if the fee for an injection is $4,000, I seriously doubt they would say upfront they will drop to $2,000. However, when I was having trouble with my insurance and their coding, his office told me that they want to treat people and they want to make it as affordable as possible. They mentioned courtesy write-offs and discounts. The courtesy write-off is for financial hardship cases but I can't , in good faith, pursue this with them. When all of their final bills come in, I will likely show them my BC/BS allowables versus their fees and ask them, in good faith, to consider the differences and give me a bottom line amount that they will accept. I truly have no idea how that conversation will go and I am prepared for them to simply say, you misunderstood and your bill is your bill. We will see.
What I'm very confident in is their flexibility in terms of payment. I can not pay my total bill at one time. Most people can't if the bills are significant. Major medical providers understand this and will work out a payment plan with you. Dr. Filler's office has a formal plan but we never talked with anyone about it. We just paid our deposits and when the first bill hit, I asked if I could make a monthly payment of $X and they said that would be fine. Again, I'm waiting for all the bills to hit before pursuing a final negotiation with them.
That's a lot of thought and text. Obviously, you may disagree and choose to negotiate up front and others on here may have had success employing that philosophy. I just don't have much experience in medical matters and this is how we went about it. So far, so good but it certainly reduced our summer vacation plans this year.
Hope that helps.
David