Thanks for asking about us.
I had a botox injection last week in the left pirifromis. So far it has just made the symptoms worse. They said to expect significantly increased pain in the injection area and flu like symptoms for 5-7 days. It has been 7 days now and Ill have to say it is worse than before the injection.
I know it takes time for the botox to work if it is going to. I think the fact that it has made it worse tells me that area/muscle is a major part of the problem.
I have a follow up appointment tomorrow. Interested to see what they have to say.
I'm still here and still doing well. I'm not 100% yet but greatly improved. Still walking a mile and a half each day. A little burning that kind of jumps around depending on the day. Sometimes it's my foot, other times it's the back of my leg. But it's WAY less than before the surgery and it's most certainly not constant like before. I flared things up this past weekend and got a bit discouraged. My first mistake was getting a massage last Friday and the person doing the massage got a little agressive and stirred things up. Grrrr. Then on Saturday I went on a marathon shopping event with my daughter looking for a wedding dress for her. (She's getting married in June.) We started at 9:30 AM and didn't get home until nearly 8:00. We walked all over San Francisco, Walnut Creek, Pleasanton, Concord, and Berkeley. lots of sitting in the car, too, which is not very comfy at this point. Then to make matters worse, I decided (all by myself) to stop taking my Neurontin. Keep in mind that I'm not taking any pain meds - never have except for two days after my surgery. So the Neurontin was all I was taking and I decided that since Dr. Barbaro FIXED me, I should need it, right? Well, a combination of no Neurontin, an aggressive massage, and a marathon wedding dress shopping spree and I was ready to hang myself. The pain was back up to a 6 or 7 and my mood was ugly. I had my one month follow up visit with Dr. Barbaro yesterday and was properly scolded and told to keep taking my Neurontin for at least 3 months because my sciatic nerve is still trying to heal after 11 years of being mashed up against the pelvic wall. So I've laid low the last couple of days and started back on my Neurontin and my pain level is back down to about a 2.
So that's where I am. Sorry for the rambling story. Oh, and after all that shopping........still no wedding dress!! :( Sigh.
Menzie: My heart breaks for you and, without going into detail, I have first hand experience with what you're going through and my best advice for you is that you should take care of YOU. It's okay to be selfish. If you're not healthy, you cannot help anyone else.
David: Egad! Don't worry about not posting "positively" every single time. You're our little bright and shining star when it comes to being positive and encouraging. It's good for us all to hear about the "downs" in this process. I agree with you in that this will most likely be something we deal with the rest of our lives. We may never be back to our former selves but so far, I'm thrilled with the outcome.
For Shirley and those of you who've recently posted about the botox injections, I hope they work for you! I had three rounds over the course of a year and I can't say they did anything for me. Don't mean to be discouraging - just letting you know.
Okay, I've yammered on long enough. I pray that everyone has a low pain day!
I have been reading the last few posts and have missed the forum so much . I just have to jump back in as I need the support, and wish to comment and support others here.
Menzie, continue to be brave. You have taken a step and now need to rest and wait. When things go wrong with our children it is so hard on the parent we want to take their burden. Your strength and courage will get her thru. You need to do some things just for you while she mends, a nice pedicure maybe a massage?
David, your ups and downs sound similar to me at only a week or so behind you in post op time. Never a pain free moment, pain moves around, if its not one thing its another. Still have to watch most things I do. Bending always gets the leg pain going as before surgery, gotta ask Dr. Filler about that as it bugs me the most, besides the SGN pain.You sound as if you are able to do quite a bit with out much pain though, we may just have a more limited lifestyle but only more time will tell. Interesting to me you would consider more surgery?
Aztec, whoa, bummer on the botox shot, you are the first one I've heard say it made you feel sick and the pain was worse?
Margie, Your progress is AMAZING. never could do what you are doing one month out, I was still walking slow taking pain meds and in and out of bed all day. You mentioned the Botox did not relieve your pain at all yet you have confirmed PS. Did the botox injections give you more pain and did you feel ill??
I will be returning next week to see Dr. Filler as I still am having alot of pain in the superior gluteal nerve ( upper butt) which brings on low back pain as well, similar to before surgery except worse. Not good, gotta fix this! He agrees it should not be painful at all by now so I have probably got new scar tissue there and am one of the lucky 5% that breaks thru that film they wrap the nerves with. He is suggesting an injection of a scar dissolving agent with steroid. Its a 50-50 chance, maybe this time I'll get lucky? He also thinks maybe the left piriformis is now acting up. We talked about resectioning it a bit before surgery then he said no, lets just do the nerve. Sooo he wants to inject Botox if he sees its spasming under the open MRI. to rule it out I guess. I'm nervous about the injections but I need to take the next step reccommended by Dr. Fillerand trust him. Anybody know if he got a new NP yet?
Now I see aztecs post and am a little worried. Shirley said they don't bother her at all, Margie will you weigh in please? goodness if I go there and get more pain I'm gonna be so bummed. If anyone else out there had the botox to piriformis would you please comment on your experience as well?
Leesa, how are you doing? Really an up and down recovery yes? Hows the weather there, can I wear shorts when I come or is it still too cold for that?
Look forward to any comments, by the way my name is Lynne
Just a quick note re: botox. Actually I usually am worse after a botox injection for at least 2 weeks and sometimes more. The reason I wasn't so bad after the one Dr. Filler gave is because he gave large doses of marcanine wiht the injection and I actually felt better for a couple of weeks. I am not saying that botox fixes me. When I first started it I went to physio and she would ultrasound it and we would stretch it real well and I was going about 3 times a week . Previous to the botox I was unable to stretch because the muscle would go into complete spasm and make me worse. After the botox I was able to stretch it out wihtout a reaction and that may be part of the reason I could walk further. Botox is definitely not a cure and I was never, never pain free--haven't been for 10 years. But I could get by with more walking and a little more sitting and that is how I know that the botox is working--I can walk longer but not more than about 30-35 minutes and have sometimes goten by wiht 40 minutes.
I think ,for you Aztec, I would recommend if it settles down that you get to kwork on stretching perhaps with ultrasound. I know for those who have had surgery, like you Lynne that is not a good idea. A big welcome back to you, Lynne.
Botox has not cured me as I have been having it for 4 years. It only allows me to walk more and do errands without major leg and foot pain setting in an hour after walking. But it wears off and you are back to square one. However, I know several people who got lto it early and with a couple of botox injections are back to their normal selves with occassional flareups.
Frankly I don't expect that the botox injection will fix me. I have had this for so long so I have a feeling I will be having to make a decision about surgery perhaps in May when Dr. Filler callls again.
After a very good day yesterday, I am already tightening today, perhaps because I have done more sitting. So I would love to respond to everyone but I have got tolie down because I will be going out to dinner and doing more sitting.
Hope this clarifies where I stand on botox.
Glad to hear from everyone as it was getting lonely on this forum. More later when I can sit longer.
I am still having lots of days with lots of leg pain but what I also want to remind everyone of is that I have spondylolisthesis (instability at L4-5) and for all I know that is the primary problem. That is kwhat HG has so that is what making the decision for surgery on my butt is a very big decision. It may not fix anything.
But Dr. Filler said I do have all the symptoms and physical findings of piriformis as well as superior gluteal and ischial nerve irritation also so surgery may fix even part of the pain. That would be great.
That's all for now.
Welcome back. We've all been worried about you! You asked me about the botox........no, it never made me sick and it never made we worse. It simply did nothing. Guess that's better than being sick or getting worse, though. Fortunately my insurance picked up the tab. Otherwise I'd have been really bummed if I paid all that money and it did no good!
We're wearing shorts and t-shirts here in the SF Bay area so I would assume that Southern California's weather is even nicer. Keep us posted on your visit with Filler. Chin up.
Thanks margie!! Aztec, I looked up all kinds of info on botox to piriformis injections. A doctor on one site commented that there is a type A and Type B. Type A is botox and B is myobloc. He sees more adverse reactions to type B. Sorry, I don't say this to bum you out as it will pass, just to inform. Margie, any idea which you got? Shirley did Dr. Filler inform you , or maybe your pharmacy receipt will say. Just asking because I can't ask until I'm actually there with the no phone appt beforehand situation. Lynne
Not to sound like a broken record, but for your daughter, have you considered walking in a warm therapy pool? Many hospitals and gyms have them. For knee and hip surgery they are a godsend. Nice comfy lukewarm water up to your chest, so you can walk at about 25% less weight. Cuts rehab time for hip surgery by 1/2. Helped my PS a lot.
Very best wishes,
Lynne.......Definitely Type A injections.
David, sorry to hear you are haviong a bit more trouble. I am glad you are always honest about what is going on with you, both positive and negative. You have cheered enough of us all on to be allowed to reach out when you are not so good. Dr. Filler also told me that his success rate wiht 2nd surgeries was much higher, something like 90-95%. I guess because if there is anything he hasn't done already he will just finish it up. I have sure learned on thisd forum that it is not always as simple as just the piriformis pinching a nerve. Dr. Huggable pointed this out also. Hang in and hold onto that positive attitude but be accepting that it is not a straight line up. And you are probably the last person I have to tell that to. I always miss you when you haven't posted for awhile. And I think you and your wife are 2 of the luckiest people to have each other.
Margie, you sound like me. If I am having a good day then I make sure I push it to a point so it turns into a bad day. Oh well??!! Get some rest and give that wedding dress a few more days or weeks before tackling it again.
Can't remember if I left anyone out.
Leesa, where are you and how are you?
Where is Julie? Haven't heard for awhile.
Well my bum says that I need to get up and lie down so goodnight for now. Butt=Bum in Canada.