I have sadness in my heart just because I want her to be well now.... Patience has never been one of my best qualities, but there seems to be nothing else for us to do but wait. When I think to myself, we have lived this for 20 months I can't even believe it. Watching another suffer everyday is not a fun ride, as if I should be complaining. If we get her healed I will truly try to be a much more patient person.
I hope you are all doing great. Leesa I hope your visit with Dr. Filler goes/went well. Was it today?? To all the people who have had surgery keep mending and for our 16th patient, it is coming up soon. It is about 9:15pm so got to run. :)
My heart goes out to you and your daughter. Your post sounds so discouraged, and I know I would be very discouraged in your position. I wish someone had the magic wand that we're all looking and hoping for that we could just wave over your daughter and make it all better. until that happens, we just have to hang on and keeping going, no matter how hard it seems. Hopefully, Dr. Filler will have some kind of advice or recommendation. I'm assuming you'll be talking to him for the 6 week followup?
Hugs from here.
Everyone else, where are you? Out enjoying the spring weather? Hope you're all taking care of yourselves and taking is easy. Julie, are you counting the days?
I've been wondering where everyone is, too. I was thinking that HG should be back from her appt in CA and I was wondering how it went.
Menzie, I will keep praying for your daughter and that her pain improves. If I could get a hold of that magic wand Donna is looking for, I'd do a whole dance with it if it would help your daughter feel better.
My appt with Filler was yesterday, thanks for asking. I ve been trying to absorb the outcome and had to sleep on it before I posted. Looks like he wants to go back to the beginning and start all over again. Get a new MRI, MRN then look at possibly another injection and worst case - a second surgery. Apparently, it s possible that the sepra-film (sp?) he uses to protect the nerve and minimize scar tissue can tear and compromise the nerve. He thinks this is possibly what s happening. Also if I have this right, (don t quote me because I sort of left my body when he said we needed to start all over), that he didn t go very deep into the sciatic notch during the first surgery and if a second one is needed he would investigate further into the sciatic notch. Like I said, I m not sure I have this right. I m going to take it one step at a time and try to stay positive about all of it. What other options do I have really? I ve come this far might as well keep looking for the whole problem. Oh, and I asked him about the bigger, drooping butt cheek and he wasn t sure why it was drooping or bigger. It s not much of a concern of mine but I think others were waiting to hear what he said about it. So there you go, who knows?!
Julie: Thinking about you and counting the days for you.
Sorry about the downer information about my appt but it is what it is and everyone is different so don t take it as the norm in case you re out there wondering is this going to happen to me?
That s all I have at the moment. Good to hear from you guys (Donna too) and I was also wondering where everyone went.
To deal with the pain, I stand for most of the day. When I take a break, I lie down on my "good" side. I take walks every day and ice down the muscles afterwards. I try to avoid car rides when/if possible. I tried acupuncture, physical therapy for 2.5 months, yoga, stretching, ibuprofen, steroid injections - to no avail.
I may consider the surgery if this pain continues. Like previous folks who have had difficulties dealing with insurance, I've no doubt that will be a challenge in my case as well. It does help to know there are others who have the same symptoms. Most of my friends and family just don't understand. I wouldn't wish this pain on anyone, but if they could walk in my shoes for just a day, they'd be grateful. When I see people sitting without any pain, I feel envious! Such a simple thing, and yet it's excruciating.
But I did want to say I haven't forgotten everybody and that I will try to do a longer post tomorrow when I have more time.
Menzie, you are one caring and loving mother and I know it hurts you as muchas it hurts yourD for her to be in pain. I think what I have learned from this forum is that surgery is not a quick fix, that recovery is a long and hard process and that sharing wiht each other is a wonderful thing.
Leesa, you pretty much know what I think and feel about your situation but I would like to add here that you are one courageous lady who is always there for everyone here and we on the forum will be there for you if you have to start over and go through the difficult process of figuring out what is contributing to your ongoing pain.
Welcome LindaV. Sorry ou had to join us but we do understand your pain . Keep sharing your story with us.I am also trying to make a decision about surgery wihtDr. Filler and have already seen him. I will share wihteveryone what he and I ktalkd about last night tomorrow. II am klexpecting a friend for dinner soon so will get back on tomorrow.
Julie am thinking of your upcoming surgery. How are you doing, Margie? I have some questions for you later.
Where is David. I have some questions forhim too.
Bye for now. Thinking of everyone.
I had appointments with my PM Dr. and my Phys Med Dr. today. Both are very interested in the research paper Dr. Filler wrote about MR Neurography. The PM Dr asked "are you going to see him?" I told him since he wasnt doing me any good I was seriously considering it - at least to have the NRN. When I digest my appointments today, Ill fill everyone in.
I was wondering where everyone went. I was thinking everyone had been magically healed except for me, yea right sure, I wish.
I have returned from my trip back to see Dr. Filler. For those of you new to the site, I had surgery with him in Dec. At 2 months out I started having very bad pain in one area he worked on. I won't go into it unless someones has a specific question, most of the wonderful people here know my ordeal and I'm sure are sick of it!!
After dealing with it for 10 more weeks I decided to go back and see Dr. Filler. He looked over my MRI again with me, answered most of my questions and we proceded to do an open MRI injection of marcaine, cortizone and hyalarandise (sp)which is a natural scar dissolving agent the body can manufacture. I was sore at the site for a couple days but about a week later I really started to feel better. While he was injecting I could see the MRI screen and there was new scar tissue surrounding the nerve. That is not good as I have broken thru the sepra film he wraps the nerve with . He did not comment on it, but his nurse Cece said she saw it as well when we spoke afterwards.
The injection seems to have calmed everything down and that area no longer hurts! I don't know if it is permanent, hopefully it will give the nerve time to heal so it won't be so raw, so to speak. I am still struggling with the sciatic pain on the other side he worked on but it comes and goes and seems to be less severe when it does come on. I am careful in my activities but at 5 months post op I am returning to more and more of my old life. Dr. Filler said it could take up to a year for that sciatic nerve to heal, but he also said it may not. I do understand a lot better now, that this is not a slam dunk surgery. I am thankful Dr. Filler is tackling it as most doctors don't even believe our pain when nothing shows up as wrong with our backs.
Time will tell if this injection sticks, I'm praying it will. I have started walking everyday and bending more. bending almost always brings on my sciatica. The good part is the pain comes, but doesn't seem to last as long. I do get a real sore butt when it comes on so I'm really confused because I thought when you release the piriformis muscle, it can't pinch the nerve anymore so what the heck is the muscle in my butt that gets so tight and spasms???
David, I remember you talking a lot about butt muscle spasms, do you still get them???
Any how, thats my story, better for now and praying it continues to improve. Glad I made the journey back to see him. Take care all and welcome to our new members, sorry about the circumstances of our meeting. Just know people here really get it and are wonderful support.
Julie, haven't forgotten you girlfriend, its coming soon!!! Lynne
I haven t been in pain as long as some of the others on this forum and my pain has been different. Standing and walking usually produce more pain than sitting for me. This doesn t mean anything as I ve learned by following everyone s journey here. Everyone has a slightly different experience with this thing. I ve taken a lot of different meds along the way and since none have really helped much, they are not worth mentioning. I had surgery a little over 3 months ago and it s been a slow recovery (more on that later see below). I ve found that my friends and family are very supportive BUT, they really don t understand. How do you explain it is a really good question. Perhaps if they could walk around (or in your case sit) with a large, sharp butcher knife in their butt and several scattered down their leg they would get a better idea of how you feel. I was very grateful to have found this site which is FULL of people who will understand how you feel so stick around and you ll get amazing support. I m glad to hear your husband understands. It s really hard for not only us but everyone else around us too..Menzie can attest to that. I hope your steroid shot helps and lasts a long time. You gotta try whatever you can.
So, it s so weird and I m almost afraid to say it out loud but, today I actually feel better!! Just two days ago I was in Dr. Filler s office feeling no better than before surgery and got the news that he wants to start over from the beginning, etc, etc. Maybe I won t have to start at the beginning after all wouldn t THAT be great??!! I ll keep you posted but thought a little hope might be in order. Not sure what all this means but frankly, I don t care!!!
Hope everyone is hanging tough.
I was also a kneeler and stander before my surgery. The thing that helped me the most was a good TENS unit. It was truly a lifesaver. My insurance paid for my first one. It lasted several years and when it finally quit working and I needed to replace it, my insurance no longer covered it so I had to buy it myself. But they're not that expensive. You can get a decent one for under $250. Of course you have to keep a steady supply of the electrodes that go with it and the prep wipes are a must because they extend the life of the electrodes. It REALLY helped me. I could sit comfortable through a movie or on an extended ride in the car. I often slept with it as well because lying down also aggravated my pain.
To echo Leesa, you have found friends on this site. You will get a lot of answers and support here.
P.S. Leesa, I'm offering a tentative "hooray" that you're feeling better and that you may not have to repeat the whole process. Fingers and toes are crossed!
Lindav, I suffered four years with this. no one understands except the people here. blind office trigger point steroid shots gave me total relief for a couple months at a time. they gotta be pretty accurate with the shot though. You aren't supposed to have more than 3 a year and they will cause a "well" in your butt because its fatty tissue so they are not a cure. Totally helped me though. Biofreeze gel is excellent topical painreliever, ice packs 20 minutes at a time are also good. Piriformis stretch done VERY GENTLY is also good. find them on the web all over. Trigger point massage is also very helpful if you can find a good massuese. I am 5 months post op with DR. Filler and am just now feeling a little relief. Praying it lasts,as I did all of the above and although I had lots of good days when it returned it was always the same and I just wanted a cure so bad, hoping still I made the right decision. never tried the tens unit but julie loved hers and other people as well. If my pain is not cured from the surgery I will definitely get one. I hated the vicodan but after surgery you have to take them, you get used to them in a week or 2, I also got very nauseus, but no more, try taking them at bedtime so your body can get used to them. Good luck!!!
Menzie, its still early in the game for your D, this takes time. I realize its hard on you but keep positive .
David, we miss you?
Aztec, did the botox ever do anything for you? Can you try the trigger point shots? What about a tens unit?
Donna, looking forward to hearing about the si joint thing. Filler says I need a facet joint block with radio frequency to follow at L2=L3. Do they do both the same day? does it hurt?
aloha all, Lynne
LindaV, thiscan't be long because this is one of those days when I just can'tsit here for long but my heart went out to you and I wanted tosay a few words.I have had this for 10 years and I have tried everything imaginable. I can sometimes get temporary relief but never complete and it always returns. The things that have helped me have been a TENS which I can't live without and mindfulness meditation. I take meds but like Leesa can only say they give be modrate relief when the pain is at a moderate level, not so much when it is like it is tonight.
Find a good an supportive doctor--you may already have one. Rest some each day--lying down gives me relief but I have to be pretty well down for the night.
What to say to friends is harder for me because I have such a hard time admitting that I am in pain and will just pretend to be fine. But I have had to pushmyself in order to maintain some of my friendships which are very important to me and since I can't take long walks, go cycling, take long trips, all the things I used to do, I try to go out to dinner on a regular basis wiht a couple of friends. I have some who are willing tocome see me for a takeout and to watch a DVD and I can lie down.
If you have had thisa short time then keep at the gentle stretching, heat and ice and find a physio who knows something about this and can guide you. Some people are able to break out of it and I hope you will be one.
But here you have lots of support and ideas and will realize you are not crazy.
Hooray for Leesa and Lynnewho gave postitive reports today.
Sorry I can't say more. Gotta rest.
Glad to hear some are doing better. To Linda V the lady who asked how do we make it. Speaking for myself, I am a Christian and so I trust in the Lord and I know that He knows what is best for me in this land of the living. Whatever brings me closer to God is good for me.
So I pray alot. I would reccomend trying to get some type of schedule for yourself everyday.
I have to lay down all day as I can't sit or stand very long.
So I get up at the same time everyday, take my pain meds and start my routine.
Make a list for yourself, like reading for 30 minutes, bible the psalms I would reccomend. Watch TV, do things on your computer.
The most important thing I tell myself is the only day I have to get through is today! Don't think about tommorrow or the next day. I can't remember if you've had surgery but if you have tell yourself you are recovering. I ice 2o min every 2 to 3 hours, also heat throughout the day. I try to call folks who are sick or shutin due to health troubles. The one thing I hate worse about this problem, for myself, is my focus tends to be on myself too much. So I try to think of others as much as I can and tell myslef there are still things I can do for God, for others. People I can help in some way. So just focus on today. I know you've probably heard this story, it was in the movie catch me if you can but here it is:
Two mice fell into a bucket of cream. One mouse swam around and then finally gave up and drowned. The other one kept swimming, never giving up, until finally he turned that cream into cheese and simply climbed out!
Corney I know, but the point being be that 2nd mouse and remember this world is not our home. One day if God is gracious to you perhaps He will lift you up again and restore you to good health. But if not theres a better place awaiting those who stay the course and follow Him. So either way you win. Just live today. I'm through preaching, :D
Hang in there