Hi Menzie
Like Shirley, I'm curious about the meds your D has been put on. The best way to get pills down is with a mouthful of chewed up food and listen to music at the same time, if it's an enjoyable piece of music, then it's easier to take the medicine! Glad to know that you're trying to follow up trials. WHAT? I can't believe that the spinal cord stimulator wasn't targeted at the sacral nerves. What is the point of putting it up at T9 level?!? Too bad. I can't remember if you've tried a TENS but when I was really bad and couldn't get relief from icing down, pills, or taking it easy, I just used to grab the TENS unit and it did the trick. Useful if you get to know how to 'cross fire'. Keep on going Menzie.
Hi Shirley - so you put yourself under more strain? Your progress with the walking just about fits my progress with the socks. Isn't there a rhyme about one shoe off and one shoe on? That's me.
I got the op notes: Very detailed so won't bore you all with it. Basically a dense band of tissue was lying over the sciatic nerve so was released, the piriformis was released at the top of the GT. Pudendal nerve was compressed from the sacral tuberous and sacro-spinous. Inferior gluteal nerve was decompressed. Sciatic nerve was flat and had a blush to it.?!?
Hey - I had a blushing nerve - very embarrassing! I just wonder if it makes a difference having a bigger incision - I think a couple of members had this kind of op done by Dr Barbaro.
Did anyone manage to get out with their kids to trick or treat?
Well, everyone it's a busy week over the pond. I'll be glued to the tv as well. Hope all goes well whichever way it swings.
Jo
Like Shirley, I'm curious about the meds your D has been put on. The best way to get pills down is with a mouthful of chewed up food and listen to music at the same time, if it's an enjoyable piece of music, then it's easier to take the medicine! Glad to know that you're trying to follow up trials. WHAT? I can't believe that the spinal cord stimulator wasn't targeted at the sacral nerves. What is the point of putting it up at T9 level?!? Too bad. I can't remember if you've tried a TENS but when I was really bad and couldn't get relief from icing down, pills, or taking it easy, I just used to grab the TENS unit and it did the trick. Useful if you get to know how to 'cross fire'. Keep on going Menzie.
Hi Shirley - so you put yourself under more strain? Your progress with the walking just about fits my progress with the socks. Isn't there a rhyme about one shoe off and one shoe on? That's me.
I got the op notes: Very detailed so won't bore you all with it. Basically a dense band of tissue was lying over the sciatic nerve so was released, the piriformis was released at the top of the GT. Pudendal nerve was compressed from the sacral tuberous and sacro-spinous. Inferior gluteal nerve was decompressed. Sciatic nerve was flat and had a blush to it.?!?
Hey - I had a blushing nerve - very embarrassing! I just wonder if it makes a difference having a bigger incision - I think a couple of members had this kind of op done by Dr Barbaro.
Did anyone manage to get out with their kids to trick or treat?
Well, everyone it's a busy week over the pond. I'll be glued to the tv as well. Hope all goes well whichever way it swings.
Jo
Hey, all, I have some good news to report. After spending the last 11 months going to specialists, physical therapy, cortisone shots, acupuncture, etc, I went back to my neurologist and asked her if she could recommend anything for the pain. She gave me some Lyrica to try, which a few of you have mentioned. Well, it REALLY helped, and it started immediately.
It hasn't eliminated the pain entirely, but it has reduced it enough that I can function. Yesterday was in the car with my husband for 3 hours total, and that's a record. I feel it a little today, but before Lyrica, that would have had me laid up in pain for days to recover.
It doesn't cure the nerve pain, but it at least helps me function. Nothing else has worked. I'm taking 75MG twice a day, and so far it hasn't made me drowsy. Apparently they have tested it as high as 600mg.
The other alternative, according to my neurologist, was Cymbalta, but she likes Lyrica better. No side effects on the liver, which was something I was concerned about. It's not cheap - $50 for a month's supply - but it helps.
Linda
It hasn't eliminated the pain entirely, but it has reduced it enough that I can function. Yesterday was in the car with my husband for 3 hours total, and that's a record. I feel it a little today, but before Lyrica, that would have had me laid up in pain for days to recover.
It doesn't cure the nerve pain, but it at least helps me function. Nothing else has worked. I'm taking 75MG twice a day, and so far it hasn't made me drowsy. Apparently they have tested it as high as 600mg.
The other alternative, according to my neurologist, was Cymbalta, but she likes Lyrica better. No side effects on the liver, which was something I was concerned about. It's not cheap - $50 for a month's supply - but it helps.
Linda
Great news for you Linda. I thought lmaybe you weren't posting anymore so glad to hear form you and that the lyrica is working so well for you. I am taking it too but am only on a total of 75 mg. It has helped me a little I think also lbut not as much as you and maybe it is because I am on such a low dose so far. I think part of my pain is inflammation from the surgery and Dr. Filler suggested I try another steroid dose pack but I am hesitating on that. I am really neurotic about meds. If I can't increase my functioning soon then I will try either the dose pack or raising the lyrica. t I'm glad you posted with your news. It may help me make my decision to raise my dose a little. It is expensive and my drug plan doesn't cover it.
Take care and hope you stay better.
Shirley
Take care and hope you stay better.
Shirley
Shirley, hang in there. If a higher dose will help, then I say definitely try it. I'm not wild about having to take drugs, but I have tried everything else first, and I read the Lyrica pamphlet through pretty carefully. I monitor myself pretty closely for any "weird" effects and so far have not had any. I sure wish I had known about this earlier - I had to keep going to different specialists to get help.
Linda
Linda
Hi all. Happy election day (well, let's hope right?)
Shirley, right after my last email to you the anesthesia wore off and and it ended up being really really sore (way more than normal) for about 3 days before going back to the normal level of pain. Apparently that was all normal. I have to go back again in 4 weeks for another set of injections, and it should take 3 to 4 treatments to notice a difference. Fingers crossed.
Linda, glad to hear that the Lyrica is helping. I have been on a combo of Lyrica and Cymbalta for several years now for my fibromyalgia, and I have to say it has worked wonders, and I haven't noticed any major side effets. It hasn't helped with the piriformis pain, unfortunately.
I know I don't write much on here -- but i do read every entry faithfully, and Menzie I really feel for your D. I just can't imaginr.... She is so brave.
Well, that's it for today. Remembe to go out and and vote. Seriously. It's our fututre,
-nick
Shirley, right after my last email to you the anesthesia wore off and and it ended up being really really sore (way more than normal) for about 3 days before going back to the normal level of pain. Apparently that was all normal. I have to go back again in 4 weeks for another set of injections, and it should take 3 to 4 treatments to notice a difference. Fingers crossed.
Linda, glad to hear that the Lyrica is helping. I have been on a combo of Lyrica and Cymbalta for several years now for my fibromyalgia, and I have to say it has worked wonders, and I haven't noticed any major side effets. It hasn't helped with the piriformis pain, unfortunately.
I know I don't write much on here -- but i do read every entry faithfully, and Menzie I really feel for your D. I just can't imaginr.... She is so brave.
Well, that's it for today. Remembe to go out and and vote. Seriously. It's our fututre,
-nick
Hi Linda
Good news about the Lyrica. I was on it for just over a year - it really did make a difference. Glad you're getting some relief. I was taking 75 mg twice a day but when I came off it, I did it very very gradually. Hope you continue to get relief.
I'll be up all night watching the results for the future of the US. I'll catch up on sleep tomorrow! Fingers crossed.
Jo
Good news about the Lyrica. I was on it for just over a year - it really did make a difference. Glad you're getting some relief. I was taking 75 mg twice a day but when I came off it, I did it very very gradually. Hope you continue to get relief.
I'll be up all night watching the results for the future of the US. I'll catch up on sleep tomorrow! Fingers crossed.
Jo
I'll be up all night too watching the election returns. I did LOTS today and got by with it with not as much pain as I had on a similar outing about 2 weeks. I am VERY tight and may pay a bit of a price tomorrow but I think it shows slow improvement. On top of errands I went to my daughters for dinner. That probably took me over the top but wanted to go.
So now I will settle in and pull for Obama. Very historic if he wins and coming from someone who grew up in the segregated south I will feel proud of my country to see how far it has come.
Shirley
So now I will settle in and pull for Obama. Very historic if he wins and coming from someone who grew up in the segregated south I will feel proud of my country to see how far it has come.
Shirley
I made my first appointment with Dr. Filler for Nov. 17th.
I guess he'll meet with me and then schedule an MRN and injections for later that week.
They told me I should plan to stay until Thursday.
In respose to my question, I was also told it was possible to have the surgery done during that same visit if I stayed 2 weeks.
As much as I hate long plane flights, I don't know if I can make a decision to have the surgery that fast. I guess it will depend on what Dr. Filler tells me.
I hope everyone that is in the process of recovering from surgery is feeling some progress.
Dave
I guess he'll meet with me and then schedule an MRN and injections for later that week.
They told me I should plan to stay until Thursday.
In respose to my question, I was also told it was possible to have the surgery done during that same visit if I stayed 2 weeks.
As much as I hate long plane flights, I don't know if I can make a decision to have the surgery that fast. I guess it will depend on what Dr. Filler tells me.
I hope everyone that is in the process of recovering from surgery is feeling some progress.
Dave
Good luck Dave.I don't blame you for not wanting to make that decision so quickly. Where do you fly from? The MRN may help you make the decision but still I had to think about it. I had the MRN in March and didn't have the surgery until September. One reason I waited was that I wanted to check out something in my spine to make sure it wasn't causing the pain.
I am 6 weeks post op today and still having trouble. Dr. Filler said my surgery was a lot of work . I have had this problem for 10 years. It may have started with a very hard fall I had coming down my steps which were very steep . I literally saw stars but had no idea the result would be chronic pain for so long. So I may be one of those who has a long recovery. It requires lots of patience. Just remember that most of the people wo have posted have eventually gotten better and returned to their normal lives..
I hope you deep posting. I remember you have posted before but can't remember your history. It's a big decision even to go, isn't it?
Shirley
Thanks Shirley.
I live in Florida and have had this thing for 16 years.
A 6 1/2 hour plane flight scares me to death. I'm thinking several sleeping pills may help. I haven't found any medications that help with the pain and sitting for even 20 minutes is unbearable.
If you don't mind, I have some questions:
Any recommendations about where to stay while I'm in California?
Are the roads difficult between the airport and Dr. Fillers office? They
don't look too bad on a map.
Do you think your current pain is more or less than the pre-surgery
pain? Is the pain at least different?
Was Dr. Filler late for your first appointment? My appointment is at
noon and I've read here that he can be hours late.
I hope you are experiencing things that give you reason to believe the surgery was successsful.
Thank you for your guidance.
Dave
I live in Florida and have had this thing for 16 years.
A 6 1/2 hour plane flight scares me to death. I'm thinking several sleeping pills may help. I haven't found any medications that help with the pain and sitting for even 20 minutes is unbearable.
If you don't mind, I have some questions:
Any recommendations about where to stay while I'm in California?
Are the roads difficult between the airport and Dr. Fillers office? They
don't look too bad on a map.
Do you think your current pain is more or less than the pre-surgery
pain? Is the pain at least different?
Was Dr. Filler late for your first appointment? My appointment is at
noon and I've read here that he can be hours late.
I hope you are experiencing things that give you reason to believe the surgery was successsful.
Thank you for your guidance.
Dave
Well, I can say that Dr. Filler does run late. We had an 8:00 am appt, and saw him at 2:00. But the weather was foul and was not his fault. But on my D's follow up visits, about 2 hours was the norm, but he does have a fabulous blue couch that encourages one to lay on their side, as many do, and so did my D.
I was told the two week deal, so had anticipated staying there two weeks. But after the injection, they said to go home, monitor how the injection worked or did not work, then had a two week phone consult and then a later phone consult to talk about surgery. You must have your pain paper in each time or they will cancel your appt. You may or may not know. Verify that your pain paper rating sheet is in prior to the day of your phone consult.
I flew my D down the first visit and it was an odd hour so we had two seats for her. I drove her from Oregon for her surgery date. We stayed at a Days INN the night before her surgery, stayed in hospital on surgery day, and back at the Days Inn after surgery. It was reasonable and we were on main road, lots to look at, and pharmacy and resturants were all within walking distance. They also gave a medical discount. It was about 10 min from hospital. Trying to find a motel by Filler's office was a bit more crazy. But driving from the Days in was not that bad.. I lived in L.A. for 9 years so the roads and driving were not that bad.
My daughter felt worse and then better. She still can not sit, but she has had a fusion that grew scar tissue, so we are dealing with some other things. Her leg and ankle are wayyyyyyyyyyyy better since the surgery after about 100 days. So it really does take a longggggggggg time. He did a 5 hour surgery on her. Pudendal nerve stuff as well as the common things on this site. I think he helped my daughter, and Jodean and the office manager are really nice people. Good Luck.
Hi Dave, I stayed at the Best Western Gateway Hotel. It was right across the street form the hospital where I had surgery. They give rates if you are there for medical purposes. You will need to get a letter from
Dr. Filler's office before you check out. I would make reservations right now because they fill up fast because of the rates they give. Tell them when you call that you are coming for medical reasons and ask what their rate is. I think mine was $139. The closer you book to time of coming the more they will charge you so book right away. It is on the internet.
No, the roads from the airport are not difficult. I paid about $35 taxi fare to get to the hotel.
My pain varies. The first few weeks were bad. I find that if I overdo, I get inflammed even now and it can be painful. But I have also had days where I am pretty good. I go out for errands and meet people for coffee now which I couldn't do at first. I would say the pain is different from presurgery but in the same places. I was in surgery about 3.5 hours.
Dr. Filler was not all that late for my first appointment when I went for my MRN, maybe 30 minutes but I have heard also that he can be as much as 2 hours late. When I have telephone appointments with him he is generally 2 hours late calling which makes it late my time and probably your time. I live in Kingston, Ontario, Canada. I originally lived in Alabama.
My flight was about 5 and a half hours. I got up lots and walked around. I was sore when I got there but coming back after hs injections I was good I think because of the marcaine.
What meds have you tried? Any injections?
Let me know if you have any other questions and I wish you the best.
Shirley
Dr. Filler's office before you check out. I would make reservations right now because they fill up fast because of the rates they give. Tell them when you call that you are coming for medical reasons and ask what their rate is. I think mine was $139. The closer you book to time of coming the more they will charge you so book right away. It is on the internet.
No, the roads from the airport are not difficult. I paid about $35 taxi fare to get to the hotel.
My pain varies. The first few weeks were bad. I find that if I overdo, I get inflammed even now and it can be painful. But I have also had days where I am pretty good. I go out for errands and meet people for coffee now which I couldn't do at first. I would say the pain is different from presurgery but in the same places. I was in surgery about 3.5 hours.
Dr. Filler was not all that late for my first appointment when I went for my MRN, maybe 30 minutes but I have heard also that he can be as much as 2 hours late. When I have telephone appointments with him he is generally 2 hours late calling which makes it late my time and probably your time. I live in Kingston, Ontario, Canada. I originally lived in Alabama.
My flight was about 5 and a half hours. I got up lots and walked around. I was sore when I got there but coming back after hs injections I was good I think because of the marcaine.
What meds have you tried? Any injections?
Let me know if you have any other questions and I wish you the best.
Shirley
Dave, one other thing. The hotel is only about 10 minutes from Dr. Filler's office. The MRN is in Pasadena and is about 30 minutes from the hotel unless they have the new surgi center ready in Santa Monica. You may ask Jodean about this.
Shirley
Shirley
Thank you Menzie and Shirley.
Your input is extremely helpful.
I made reservations at Days Inn. It was a few bucks cheaper.
Dr. Filler's office sent me a schedule of his rates.
Ihave health insurance and understand he is not on their list of providers.
I have more questions:
Does Dr, Filler require payment in full for the injections prior to giving them?
Did you have both sides injected or only the side causing the pain?
Did Dr. Fuller encourage you to have both sides injected and did you agree?
Did you have surgery on both sides?
Looking at the cost of the injections, I'm thinking I only need the side causing the pain to be injected. Both sides are tender if I lay on a tennis ball, but my right side is not painful and I'd be reluctant to have surgery on my right side anyway.
Menzie: I'm glad to hear you feel Dr. Filler helped your daughter. I know whatever pain relief she has experienced has been a long time coming.
Shirley: It sounds like you are progressing well. Different pain sounds like a good thing.
In regard to meds I have take, I've taken many different types of anti-inflamatories, muscle relaxants, narcotics (oxycotin & percocet), lyrica.
I've had numerous piriformis injections, bursa injections and 2 epidurals at L5-S1. Nothing has helped with the pain. Ice packs and a hot bath are my only sorces of relief.
I also tried accupuncture with 3 different doctors.
I've went to the Mayo Clinic in Jacksonvilleabout 12 years ago. They were puzzled and really of no help. About 4 years ago I went to The Cleveland Clinic and saw Dr. Bohlman. Dr.Bohlman offered to remove the piriformis muscle, even though the guided MRI piriformis injection I had just prior to seeing him was not effective. He said it was a simple surgery and he'd schedule it as his last surgery of the day, after his spine surgeries. I didn't think much of that idea and decided against it.
Thank you again for your guidance.
Dave
Your input is extremely helpful.
I made reservations at Days Inn. It was a few bucks cheaper.
Dr. Filler's office sent me a schedule of his rates.
Ihave health insurance and understand he is not on their list of providers.
I have more questions:
Does Dr, Filler require payment in full for the injections prior to giving them?
Did you have both sides injected or only the side causing the pain?
Did Dr. Fuller encourage you to have both sides injected and did you agree?
Did you have surgery on both sides?
Looking at the cost of the injections, I'm thinking I only need the side causing the pain to be injected. Both sides are tender if I lay on a tennis ball, but my right side is not painful and I'd be reluctant to have surgery on my right side anyway.
Menzie: I'm glad to hear you feel Dr. Filler helped your daughter. I know whatever pain relief she has experienced has been a long time coming.
Shirley: It sounds like you are progressing well. Different pain sounds like a good thing.
In regard to meds I have take, I've taken many different types of anti-inflamatories, muscle relaxants, narcotics (oxycotin & percocet), lyrica.
I've had numerous piriformis injections, bursa injections and 2 epidurals at L5-S1. Nothing has helped with the pain. Ice packs and a hot bath are my only sorces of relief.
I also tried accupuncture with 3 different doctors.
I've went to the Mayo Clinic in Jacksonvilleabout 12 years ago. They were puzzled and really of no help. About 4 years ago I went to The Cleveland Clinic and saw Dr. Bohlman. Dr.Bohlman offered to remove the piriformis muscle, even though the guided MRI piriformis injection I had just prior to seeing him was not effective. He said it was a simple surgery and he'd schedule it as his last surgery of the day, after his spine surgeries. I didn't think much of that idea and decided against it.
Thank you again for your guidance.
Dave
Dave, no I didn't have both sides injected, only the right side where I get all the pain in butt, leg and foot. IMy left side is tight and tender too but not anything like the right. I think it is tight from using the side so much. I roll that side on a ball too and stretch it out 2--3 times a day because it has been even more sore since surgery from overusing it. I don't even think I mentioned the other side to Dr. Filler. So , no I only had surgery on the right side.
Yes I did have to pay Dr. Filler prior to having my injections. I don't know if he will let you do post dated payments but he may.
The MRI you had done wouldn't have shown all the adhesions on nerves as an MRN does so that is probably why nothing showed up on the MRI. Dr. Filler told me that I wouldn't have good results if he only did the piriformis in surgery because I had so many adhesions and fibrovascular bands that had to be removed. And I think this is generally true with piriformis syndrome.
My sister went to the Mayo Clinic in Jacksonville and went to an excellent physiatirst who really helped her. Maybe you should try again as I think they know more now. She told her doctor all about me and the surgery I was having and he was very interested. If you want his name I will get it. It was all paid for by her insurance.
Your date is getting close so keep us informed and let us know what your MRN shows. I am really interested.
Shilrey
Yes I did have to pay Dr. Filler prior to having my injections. I don't know if he will let you do post dated payments but he may.
The MRI you had done wouldn't have shown all the adhesions on nerves as an MRN does so that is probably why nothing showed up on the MRI. Dr. Filler told me that I wouldn't have good results if he only did the piriformis in surgery because I had so many adhesions and fibrovascular bands that had to be removed. And I think this is generally true with piriformis syndrome.
My sister went to the Mayo Clinic in Jacksonville and went to an excellent physiatirst who really helped her. Maybe you should try again as I think they know more now. She told her doctor all about me and the surgery I was having and he was very interested. If you want his name I will get it. It was all paid for by her insurance.
Your date is getting close so keep us informed and let us know what your MRN shows. I am really interested.
Shilrey