scar tissue really!!!

mwolf2022 · #1 (**permalink**) 10-25-2011, 03:49 PM

Its been awhile since I posted.I have been consumed with trying to figure out what is causing my pain.

The Surgeon who performed my fusion has pretty much told me to move on , so I have , from him anyway.

The PM I see has performed two nerve blocks and one facet block so far with no relief at all.

Both doctors have told me that scar tissue is my issue.My mri does state that there is scar tissue surrounding the nerve root at L5-S1 , More right then midline.

My issue is I had a discecotmy in 2006.Never had this pain I have now , which is a burning pain real low , like in the tailbone , coccyx area.Along with intense burning in my buttocks and upper thigh.

I had a fusion in 2008 that was performed from the front.How could scar tissue be an issue when the surgery wasnt performed from a posterior approach , and also my pain didnt start untill 9 months post op.

I question how scar tissue could cause a problem when it was there two years before the 2nd surgery and I had no issue.

I did question the PM doctor about the possibility of piriformis and he looked at me like I was crazy.

I did some research and will be traveling to NYC this friday to see Dr.Fishman.He is supposed to be a specialists in sciatica and piriformis.

Wish me luck as I hope there is light at the end of the tunnel.

Mike

Maria · #2 (**permalink**) 10-25-2011, 04:36 PM

Mike,
Your symptoms sound much like what plagued me chronically post my failed L4percutaneous discectomy which a few months later showed scar tissue on the rt. S1 nerve root.Later I had bulging of L4 again and L5S1 tho the burning diffuse pain was blamed on "scar tissue." Both of my legs were involved too with that awful gnawing burning pain besides buttocks bilat and tailbone .. plus back pain worse than before the surgery.

I also had a regular big open discectomy on L5S1 several years earlier tho that was Ok post surgery. There was no evidence of scar tissue at the time.

Post the '92 surgery I took Elavil for 5 years for the neuropathic pain and then after that 12 years of Neurontin (stopped taking it last year and painful burning stuff stopped bothering me as much somewhere in the 2000's). I had a really good PT that worked w/failed back surgery patients starting in 2001 and he said I had piraformis syndrome as well as SI joint syndrome. Fortunately I was able to see him for a year and with his 3x/week, ESIs and medications I did have improvement. I was still researching the possibility of more surgery re low back pain from 2000-2005/6.

Between 2000 and 2006 I was offered 3 different kinds of surgery for L3-L5S1 (3 level fusion, 2 level ADR, and hybrid surgery at L4 and L5S1). I didn't have more surgery as I started to feel better not worse however I do take a low dose opioid medication every day.

Am interested to read what your next consult with yield so please keep us informed and sorry to read that you've got this type of pain and do hope it will resolve more quickly than what I experienced.

mwolf2022 · #3 (**permalink**) 10-25-2011, 04:52 PM

Wow Maria your history sounds very similar to my experiences.I am going on almost three years with no relief.

I dont know how people go years with no help , it really wears me out.I will keep you posted on the outcome.

Mike

dshobbies · #4 (**permalink**) 10-25-2011, 05:19 PM

Pain exhausts you and robs you of your ability to fight on your own behalf. But it is also a excellent motivator. Whatever it takes, keep up that fight until you find your cure. There is a doctor out there for you... when... where... just keep trying. I wish you good luck,

Dale

mwolf2022 · #5 (**permalink**) 10-25-2011, 05:58 PM

Quote:

Originally Posted by dshobbies

Pain exhausts you and robs you of your ability to fight on your own behalf. But it is also a excellent motivator. Whatever it takes, keep up that fight until you find your cure. There is a doctor out there for you... when... where... just keep trying. I wish you good luck,

Dale

Thank's Dale , I look at my kids every day and they are the reason why I keep going.

I will keep plugging away and hopefully one day , I will find the one.

Mike

mmglobal · #6 (**permalink**) 10-25-2011, 10:48 PM

I think that some diagnoses are cop outs. Often, I believe that when we hear 'scar tissue' or fibromyalgia, we should be hearing, "I don't know".

I don't know, is not the same as scar tissue!

I'm sorry that you find yourself in this situation. I hope you find some relief. All the best,

Mark

ADR seeker · #7 (**permalink**) 10-25-2011, 11:05 PM

Sloppy surgery. Poor dissection. Lousy surgeon. List his name so that others can avoid this butcher.

mwolf2022 · #8 (**permalink**) 10-31-2011, 05:02 PM

So I made the trip up to NYC to see Dr Fishman.He was very enthusiastic about his work and seemed to be generally concerned with my pain and how long I have been suffering with no diagnosis.

He did the usual evaluation , then he did a EMG , which came back positive for piriformis syndrome on both sides.My reflexes were really delayed on the results he showed me.

Dr.Fishman then gave me two injections , one on each side.Very little pain during the procedure except when he wasnt confident he was in the right muscle and had to move the needle around a little.

After the injections my pain went from a 7 to around a 2 instantly.He stated that he was very happy with the results and scheduled me for two months of PT.

He informed me to stay in touch with him and if I do not keep on improving he would like me to come back and try a botox injection in the muscle.

Finally after three years of going from doctor to doctor and not getting an answer I can finally throw myself into this rehab and hopefully one day have some of the life I used to know back.

Maria · #9 (**permalink**) 10-31-2011, 07:17 PM

Wow, I'm happy for you re that quick of relief! I wish someone could have lessened my pain that rapidly.. I think it lasted from '92/93-2001 because no one even listened to me back then except to say "scar tissue" and tell me that I was "doctor shopping/hunting." PTs were more accurate with their pinpointing pain but that didn't matter much back then.

I remember hearing about using botox for this as well right about when I got relief in this area.

Hopefully this will work and you can move on. Please do keep us informed and thank you for sharing the outcome of this visit!

mwolf2022 · #10 (**permalink**) 10-31-2011, 07:25 PM

Maria , Nobody listened to me either.I pretty much did all this through research on this site and other forums , websites , etc .I wish I would of did some research prior to now and maybe I woudnt of suffered for so long.

jsewell · #11 (**permalink**) 11-01-2011, 12:16 AM

I am so glad to hear of such an improvement and so obvious and quick!!! that is just awesome and i wish the best for you
judy

mwolf2022 · #12 (**permalink**) 11-01-2011, 01:45 PM

My pain has slowly started to come back.I feel aroud 20 percent better.Friday and Saturday were amazing.

Last night and now today I am starting to feel like I have for the past couple years.
I sent an email to the doctor , waiting for his response.

jsewell · #13 (**permalink**) 11-01-2011, 06:13 PM

So sorry to hear that.
judy

Maria · #14 (**permalink**) 11-02-2011, 04:27 PM

If you get the Botox injex please let us know how that goes. Wishing you less pain (again)!

mwolf2022 · #15 (**permalink**) 11-02-2011, 05:20 PM

Quote:

Originally Posted by Maria

If you get the Botox injex please let us know how that goes. Wishing you less pain (again)!

Maria I will keep everyone posted.I spoke with doctor fishman last night and he was happy i had some relief as a proof positive.

Dr.fishman is starting a new study for piriformis syndrome in a month or two and all the injections will be covered as long as you meet certain criteria.

I am hoping I do as they seem pretty expensive (I have a hmo plan so they are not covered as he is out of network.)

MiKE

Maria · #16 (**permalink**) 11-04-2011, 02:14 PM

Mike,
You might be able to try the angle with the HMO re going out of network that they don't have an in network specialist that provides specific treatment for your diagnosis however this doctor does. Perhaps then he could be treated as an "in network" provider. HMOs are pretty stinky to work with tho it's worth a try unless this is a clinical trial then hopefully you will qualify for it and be able to get into the Clinical trial. Will keep my fingers mentally crossed for you! Good luck there!

jsewell · #17 (**permalink**) 11-04-2011, 07:55 PM

Mike i hope you do qualify for the study and that is starts quickly . i had to work with an HMO and once they told me that they did have a qualified doctor to do a procedure that my out of network doc wanted me to have in Los Angeles. (i was living in Ga at the time) WEll i went to their doc , the test was a mess and came out inconclusive. The doctor performing it was complaining that he had no idea what to do next when something did not work. I then at a later date flew out to Michigan for the test and saw how it was done with a practitioner who knew what he was doing. It took a lot of time but they eventually paid for the trip to Michigan. But it is a frustrating fight.
Good luck and i will keep my virtual fingers crossed as well
judy

Maria · #18 (**permalink**) 11-04-2011, 11:05 PM

If you have one as a provider then you pretty much can figure out what I'm going to say though I'll just keep it to this~ trying to get the specialist you choose or know about to be "qualified out of network specialist" that offers what no one in network can offer is the trick. It takes some doing tho I've seen it done before. My last employer was a Managed Care Company and just sometimes things can work to the patient's advantage. It takes near a miracle tho it actually can happen at least occasionally.

I know it's far easier to blow someone off and say that there is an in network specialist that does the same thing or that the insurance company isn't going to authorize "that" kind of procedure or surgery or whatever however with enough documentation and the right circumstances I'll say it again~ sometimes things do work out.

Judy I certainly hope you let the HMO know how things went for you with that particular situation. Sometimes the only way that these companies can figure out that they're wasting their money is to have people continue to complain and see if the company had perhaps just authorized the first thing requested they could have saved several other consultations, procedures etc.

People/patients do have to report things that don't work out well for them however and many people don't go any further than calling Member Services and complaining vs. writing to the CEO of the company and really filing a grievance or something of that nature. In Managed Care/HMOs sometimes it is that squeaky wheel that gets oiled vs. just ignored!