Piriformis release surgery, discussion and information

Menzie:

If you don't hear from them at the scheduled time Friday, I'd call them one minute after and don't hang up until he comes to the phone, I'm serious. You guys need to get some answers.

Please let us know how it goes. We're pulling for you.

Leesa

Menzie,

I'm with Leesa except I'd go one step further. I'd call first thing Friday morning to confirm with the front desk that he will, indeed, be calling you and then ask them what time you can expect that call. Then, just like Leesa said, if it goes past that time, get on the phone and don't hang up until he talks to you.

Sounds like you've got the doctor's email address so don't be afraid to let him know if his office staff is less than efficient. I own my own business and I really appreciate it when one of my customers takes the time to let me know if they haven't been treated properly. I don't want to lose a client because of inefficiency on the part of someone who works for me. I'm guessing Dr. Filler would feel the same way.

Our hearts are all breaking for you and your daughter and we're all hoping you get some answers SOON!

Margie

Thanks for the advice. I will call to verify appt. time as you have suggested. They said after 5 again. I feel that it must be hard job because being in pain is hard, and sometimes people in pain are hard, although they can not help it. These people need to realize that at least for me they are a life line of hope. Helpers of the hopeless, and if they can not fit that position, then they should opt for a different career field. LOL. I do feel that Dr. Filler is good, it's just getting past human errors.
Seriously, I do appreciate you all, and although I personally am not the physical sufferer, I feel for all of you that are. I am a mental sufferer, who wants a miracle, they say they happen. Man made or God, I will take one.:-) Watching this happen to my daughter has definitely given me more empathy towards people. Especially when I see people who may be over reactive. Also, as I read my past posts, I realize there are some typos in my typing. But typing too fast. A BIG THANK YOU TO EVERYONE OUT THERE.:-)

Good Morning Menzie,

Such a place you are at, my heart truly feels for you and your daughter.

I'm just throwing this out there, in the spirit of concern and compassion.....but, have you thought of trying to see a different dr.? I realize you have started the process with Dr. Filler, but I also hear a great deal of frustration and disappoitment already.
My husband is often my "reality factor", he settles me down, helps put my desperation in check, and can see the whole picture much easier than I can. If it were he in your position, he would possibly be wondering if this were the best place for me. I soooo hope I haven't offended or confused you more.....it is just a thought, as I certainly don't have the answers...am still searching for a solution myself.

I have had two sessions of trigger point therapy, the verdict is still out. If there aren't positive results from this, my last option is a spinal stimulator.

Everyone take care, Sadie

Sadie:

I'll keep my fingers crossed that the trigger therapy will give you relief.

David (when you get back) and/or Donna:

So, the past couple of days it seems a substantial amount of nerve pain (leg and two middle toes) has returned. Not so much butt pain though. I've been taking it pretty easy. I know there are ups and downs. AND, I'm so mad at myself for not asking Dr. Filler this question when I saw him this week. He told me to stay out of work for another week and a half which I will do. But, if when I get back to normal activity (work) and then have increased pain, do you know if it's ok to just "work through it"? Did you ever ask him if returning pain and continued activities would screw anything up or is is just that I will be in pain and continue to heal? I can deal with pain I just don't want to reverse anything that's been fixed. I also know it could take 6 months or more to know if it truly worked but I cannot be out of work that long.

If you don't know I will call and ask the nurse. Just thought I'd put it out there.

Menzie:

Here's hoping you actually talked to Dr. Filler tonight.


Thanks,

Leesa

Have been very busy helping out with grandchildren so jsut checked in. I feel very bad for you and your daughter, Menzie. I am concerned that Dr. Filler is getting overworked. I know he means well and is an excellent doctor but it seems there are more and more complaints recently about not receiving expected calls or long waits for appointments or being given 6 weeks to 2 months before you can have a telephone appointment. This really concerns me. I wonder if the change over from Sheila to thenew NP is causing some of the mixup--not that he isn't good but just lots to take on all at once.

Whatever the cause, I know how hard it must have been to wait for his call and for it not to come. We depend so much on doctors. I hope when you talk to him you get some answers and hopefully some helpful answers.

Leesa, sorry you are having more nerve pain and just when it is close to time to return to work. I could hear the concern in your post. Would it be possible to put your return off a little longer. David returned part time at first--can something like that be arranged for you? I suppose it is a little different in your job but could you take on fewer assignments at first? It must feel discouraging. It maybe a good idea tocall Ever and that way Dr. Filler will also know you are having more pain. Take care.

Shirley

Shirley:

Yes, I will definitely take fewer assignments at first and call Ever.

All:

I have felt discouraged the past couple of days. I've woken up three days in a row with more nerve pain than right after surgery and haven't been out or done anything physical at all.

I hate reporting this because I was always afraid when someone who had surgery reported set backs but I want to be up front and report what's actually happening. Although discouraged I just keep trying to remember and read back on David's posts where he had some good and bad strings of days and last we heard he's doing great.

I guess my head is just getting to me because I don't have a lot of distractions right now. I'm not used to doing nothing for so long!! I'm always going, going, going.

Done whining, thanks for listening.

Leesa

Leesa, I know it is discouraging with these setbacks. I certainly remember David having the same up and down pattern and it is best if we all know because for those who have surgery it would be even more discouraging if they felt they were the only ones having these problems. I am sure you will be glad when David gets back and can reassure you that this is what to expect. Still, it is hard to be stuck in the house and more so when you live alone as I think you do. This is one thing I dread about the post surgery as I hate being stuck in too. Of course this all depends on if I have surgery.

Did Dr. Filler tell you exactly what he did in the surgery compared to what he saw in the MR Neurography? Where is your nerve pain that you are experiencing now? Are you still on any pain meds?

Take care and don't get too discouraged andwhen you do just get on the forum and whine away. That is partly what this forum is all about and I know David would agree. I know everyone would agree.

Thinking about you and hoping that this pain lets up soon. Keep us informed about the good and the bad.

Shirley

Thanks Shirley.

I thought he removed a portion of the muscle but he said he did the "release" of the muscle. The nerve pain is down the back of my leg, stops at the knee and pain in my foot (two middle toes mostly).

I am still on hydrocodone. I was going to try to wean off but Dr. Filler said to continue taking it as I have for another month or two then wean off. He also put me on a steriod pack.

Will keep you posted, thanks for the encouragement.

Leesa

Leesa, don't worry too much about the nerve pain returning. It seems to be more the norm than not. I am 10 weeks post op and still have lots of pain. Sheila used to say it was the nerve waking up. I still walk slowly and tire easily. I am 51 but no wimp. I was a 3 time a week golfer, always walked the course, I also walked on the days I didn't golf with friends along a path by the beach for at least 3 miles. This is by far the hardest thing I have ever experienced and am stunned at how long and hard the recovery is. I don't say this to scare anyone, just to inform. I can't wait to get back to golf!

Shirley, good luck with your Filler appt. As others have said, be prepared for a long day of waiting.Did you decide to rent a car or take taxis?

Menzie, I will keep you and your daughter in my prayers. Your story is really sad and I truley hope Dr. Filler can help her. I do believe Dr. Filler is overworked and hard to reach. Ever is nice but hes new to this, doesn't have the same confidence as Sheila. His front office girls are not very nice and very unprofessional in my opinion. Always be sure you have the 3 pain assesment papers in that day if you have a phone appt with either Dr. Filler or Ever or they will not call you. You can print them on your own. Leesa, I'm jealous you live close enough to go back and see him in person!! Hawaiigirl Ps, You all sound like such lovely people, too bad we had to meet this way.

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Hey everyone,

Back from the cruise. Wonderful, wonderful time. W-A-Y more exercise than any time since surgery and I weathered it just fine. The first day was quite strange physically. My left butt muscle twitched up a storm. There was no pain but it just went crazy due to the extra exertion. After that, it settled down.

Yes, I had some nerve issues but they were temporary and seemed to be located in my middle toes or just pressure behind my left knee. Each time, I would either walk my way through them or just take a nap and I would be okay. Steep beach slopes caused some discomfort on my hips. I kind of expected it and when I would feel it after walking a while, I would stop, get on level sand, and the discomfort would disappear. Stairs from one deck to another were okay in either the up or down direction. If we had to go more than about three decks, I took the elevator.

Reading rapidly through the posts since I was gone, I noticed Leesa was wondering about returning pain. Yes, I experienced the same and it would last a few days and then I would experience a step change for the better. When I would have a step change in improvement, I would do more and then plateau until the next step change. If you expect the ups and downs, they aren't quite as bad on the psyche.

Menzie and all others, Dr. Filler has never called me on time. Never. Best he has accomplished is about two hours late. The worst was four hours. We believe he is overwhelmed as well. However, even the pre-surgery crew at Cedars said he is always late so they didn't even begin my prep until they had finished everyone else. His lack of promptness is a source of humor to the Cedar nursing staff.

I know it's frustrating though, especially when you or someone you love is in pain and you REALLY need to talk with him. When I needed to talk with Sheila, I had no pride and just rang their phone off the hook or bombarded them with e-mails. I figured that I had earned some sort of prompt service given my investment in their practice. That should be your attitude as well.

I would be lying if I said I was glad to be back. The islands and the warmth and beauty were just what we needed so I'm sure you folks know what I meant by my first statement.

Hope all is well.

Your friend,

David

Ok, here I go. We did get the call on Friday evening. Dr. Filler said that if our D got more relief from the injection he would rate the surgery as doing great at 85-95%. But since she only got two mornings with some calmness, and one day for a brief moment a level of 3 he would rate the success at about 60-70%. He did say that from everything he sees, even though the injections didn't give as much relief as he hoped, that she does have spasms that are irritating the sciatic nerve. He said that if she hadn't had any slight changes, he would not see the surgery as an option. Does two morning calmess days rate as a change?? And by calmness, I mean she did not have to awake to rush to take her oxycontin, neurontin, Ibuprophen, Tylenol ect... She awoke and was still in pain but not the usual rush. But that was only for two mornings and her days were still the same level. I am so worried about making the wrong choice with her. But on the other hand what choice does she really have? Her life exist on my couch waiting for us to come home from work. Sitting is an absolute can't, walking is about a 1/2 mile if I push her to go. She deserves the best option, as you all do, I just would seriously die if this were to never end for her. I think had she already had an adult life, her dealing with this would be a bit easier. She at times appears to be younger than our 17year old daughter who is lively and able to live a life in front of our couch child, who too, used to live.

Her syptoms are: Can not sit, pain in the left buttock, down butt fold(where a ladies rump might rest):-) then down the thigh, jumps to outer left calf, into her ankle. She rates the pain 7-9 everyday. Except for the tease of the 3 moment. She is going into withdrawl tonight, and will do a med change tomorrow afternoon. Oxycontin doesn't really do anything but dull her senses, at least as far as we can tell. She has been on these meds for 17months. We are weaning her off neurontin as well. Sounds crazy but it seems like she gets more benefit from my ibuprophen Tylenol cocktail. :D Can meds make pain worse??? I send out my best wishes to you all. When I read all of your posts you give me strength. Thank you.

They want us to try a spinal stimulator, but in doing so, this really only treats the symptoms, and also takes away some other medical options. But if something doesn't open itself up as a reliable modality, I fear we may have no choice. We are set for surgery on March 25th.

Hi PDH:

I had the surgery about 3.5 weeks ago. my experience is similar to yours. I had been suffering off and on with this pain for 2.5 years due to what i believe were long commutes back and forth to work which took 1.5 hours almost each way. I had started seeing a pain management specialist who gave me a coddle injection. This relieved some pain temporary.

After not being able to make regular appointments, I switched doctors and started to see Kaleb Kroll at PMI in Bethesda, MD. He was a good doctor and very friendly but he could not cure the problem for me especially after many L5 and S1 injections over a 5 month period. Which all i had was no pain relieve and much steroid in my body. He recommended me to a surgeon at Orthro/Traum Bethesda. The surgeon he recommended was not available and I was in such great pain I told the receptionist to book me for whom ever had the first appointment.

I met with Dr. Joseph O’brien. He was very nice and straight to the point. It also helped that I had all of my medical records with me at the time of the appointment. He told me I needed the release surgery.

I had the surgery and the first few days I didn’t feel pain except from the incision site. However, I am experiencing the same spasm pain again. I was told this could be normal due to the trauma of the surgery on the body and the nerves need to heal. I take lyrica and pain medication current. I am not quite sure that lyrica is helping because I experience most of my pain at bed time when laying flat. I usually take the pain medication at that time so I can at least sleep throughout the night. I don’t experience much pain walking but sitting is the polar opposite if for an extended period of time. Keeping in mind i had a rotator cuff injury that i am being treated for as well but these two sets of discomfort are totally in two different places.

Most people don’t understand that this is a very painful process and healing will take some months it seems. I am fortunate to be able to telework from home. I currently can not sit on the sofa in an up right position, drive more than 30 mins, rub moisturizer on my right foot (i had the surgery on my right leg) or exercise or stretch. I am hoping that the pain will eventually go away as time passes. However, I meet with the doctor again today and will see what he says about recovery and pain.

I will write back and tell what the doctor said and what are the next steps to the process.

G

OOps, Dr. Filler also apologized for his staff telling him the appt. was changed. He said they sometimes drop the ball. And also he said in regards to the injection if her muscle was so spasmed/fibris(sp) that it could be another reason as to why the injection did not give the result hoped for. What do any of you think??? Talk to you soon.

Menzie, this can't be long as I did more sitting than I should have today trying to get some things booked for my trip to see De. Filler. It is quite a big decision for you and more so since you are making it for your daughter , not like the rest of us making it for ourselves. It is good Dr. Filler is honest with you. I think what we all have to say to ourselves is that he is thebest there is. The more I read about hm the more I realize that when you pick him for these sciatic problems you are picking an expert in the field of peripheral nerve entrapments and an excellent surgeon. His credentials are unbelievable. He does seem to be saying that he sees spasming that is causing sciatica at least on the MR Neurography even if she didn't get much help from the injection.

I am trying to remember what the spine problem your daughter has was. Did I remember that she had some kind of surgery on her back and it was after that that she pulled something that started this terrible sciatic pain?

We all think about you so much and would give anythingif Dr. Filler's surgery could help.I think you are right--what choice do you have?

Is she going off of pain meds because you and she decided or did Dr. Filler suggest it? I sometimes wonder if mine help too and would love to stop them. But tylenol and ibuprophen don't touch my pain either.

We are all praying for you and want as much for her to get better as for ourselves. Hang in there, stay strong and know we are all here for you and your daughter.

Shirley