19 Year Old Male. Scoliosis Progressing.

[LindaRacine]

LAL and John...

I've been reluctant to post this, but when there's no obvious reason for pain, something like this should be considered.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004456/

While it most commonly affects the extremities, it can affect the torso.

Also, there are some who believe that the expectation of pain can itself be the issue. Check out Dr. Sarno:

http://www.healingbackpain.com/

Regards,
Linda

[LAL]

Linda,

Don't be reluctant to say anything, as I am open for all suggestions. In my work I have access to and speak all day to MD's and DO's that practice alternative medicine. I am very open minded and believe there is a mind/body connection. Its funny because I am familiar with Dr. Sarno's work and just last week downloaded his healing back pain book to my kindle. It has excellent reviews on amazon as well. I know that could be a very real possibility. I don't have my head in the sand and I am open to all ideas as to her pain. I will be reading it in the week or so as soon as I get a chance. I know it is my daughter that has to read it..and I am hoping she will be open to it too, it is worth a try. There is also a doctor here in Southfield, MI that does a 4 week workshop related to Dr. Sarnos work. Dr. Sarno says its not that the pain does not exist, it is actually there, but there could be an underlying cause created by the mind. I think some who hear of Dr. Sarno think that he is saying the pain is not really there but it is imagined. That is not what he is saying. Hey, everything is worth a try.

We have had multiple opinions and all but one have recommended revision surgery. That was the one we went to last week. Not that we spend our time going from Dr. to Dr.to Dr. It has been 6 years now and actually the surgeons themselves sent us to different ones. This has been over the course of 6 years. They would say, this is what I would do, but I would like you to consult my collegue so and so to see what he says.... However they all have presented different (like 180 degrees different) approaches as to what they want to do. one posterior, one anterior/posterior, one taking all hardware out and starting over, and one going down 2 more levels, one fusing her to the sacrum. The only things they all tend to agree on is that her original surgery should have been at least 2 more levels down, that the one level could possibly not be fused and they have all questioned why her original surgery was an anterior and not posterior. They think she would have had a better outcome with 2 more levels fused. It was what our surgeon at Shriners though was best, I guess. Unfortunately I did not get second and third opinions before her first surgery and probably should have.

I have just started to get so active on this board now is because in February we went for an opinion with a very, very well respected, experienced surgeon who is chief of spinal surgery at probably the best hospital for spine surgery we have here in Michigan. He looked at her X-rays, MRI's and CT's and did a pretty thorough examination of her back and pinpointed her pain area. He immediately said she needs to be "fixed" and I can fix her. He is the one who said he would leave her hardware in as is and do a posterior only and extend her fusion to sacrum. He also claims to think this will alleviate her pain. She finished up her semester and has not signed up for fall classes because she wants to have him do it in the fall. They said to call in June if she wants fall surgery. I am scared to death because I don't feel sure she won;t be in more pain. He is not very chatty, as most surgeons are not and a tad bit arrogant so I don;t feel he explained it enough actually he didn;t explain it all as to why he thinks this will help. I have made another appt. with him in June to ask questions and I also took her to the other doctor last week in Ann Arbor who is the only one who said not to do surgery, so now I am even more reluctant. I know it is her decision as she is 21 but I know she is desperate to get help and don;t want her to the wrong thing.

If Dr. Sarno's ideas help... it would be a godsend!!! I just don;t know how to get her to be open to the idea.

Thanks for listening to my rambing, it helps to tell it to people who understand....and most people on this board know what it feels like to make these types of decisions for themselves or their children. It so hard since scoliosis is not usually life threatening but the outcome can really affect your life.

[JenniferG]

My friend had this complication, after three shoulder operations, was told she had RSD. But only after being told to "live with it" and "it was all in her mind." Neither of these statements are ever helpful. They caused a great deal of anger and desperation including depression. Finally her GP put her on one of the drugs (forget the name atm) which are given for epilepsy with the explanation it would help her brain recognise there is no pain there any more. She was on the drug for 12 months and in that time had severe headaches and gained 17 pounds. Finally came off it last Christmas and the pain has not returned. Her shoulder, after three operations, is stiff, but pain-free. Unfortunately she's terrified the pain will return. She has lost most of the 17 pounds and her headaches are gone. It was a miserable 4 years for her and cost her a bomb, after trying all sorts of expensive alternative therapies.

The pain is very real. I just don't know what causes RSD to happen.

[LindaRacine]

LAL....

I have two recent experiences that made me certain that the brain can certainly expect pain. Most recently, I had a steroid injection for greater trochantory bursitis. After the injection, the doctor rubbed the area of the injection vigorously and deep. My brain made me want to scream out in pain, but after a second, I realized it didn't hurt at all. Prior to the injection, pushing on that area, even lightly, would practically send me through the ceiling. Had it been my back instead of my hip, I'm fairly certain that the muscles in my back would be very stiff and probably pretty sore.

I hope your daughter finds some relief. I hate the thought that they may end up doing surgery without any proof of what's wrong. If it is something like CRPS, the surgery could make it worse.

Regards,
Linda

[JDM555]

I don't know what the deal is with all this brain sending pain issue, but I don't think that's my problem. I haven't had issues where I felt a severe pain and realized it wasn't painful. I didn't have this "pain" after surgery. I had it before surgery as well and I still have it now. Except now, my whole spine feels like it's been dipped in cement and is about to crack when I bend or twist.

I'm not going to believe I have all this brain signal/pain crap at the age of 21. I'll leave that as a last resort. My next step is a CT scan and I'll go from there. I'll go to many local spine surgeons and take a break from school if I have to, because that is the least of my concern now. I will start looking for new surgeons after my CT scan and getting opinions all this summer.

I don't mind if I have to travel, I want to find a solution and I keep dragging it out. I'm getting depressed and can't gym or do activities and it's annoying me. My brother actually made me realize how I've given up hope, and I'm not doing as much as I should. I hope I succeed and find a solution to my problem so I can help others and inspire them to not give up either. And I wish my problem can be fixed so I can tell LAL how to fix her daughters problem cause I know how crappy life can be with this pain.
John

[jrnyc]

i hear you John!
and i agree with you...
i know you will find the right surgeon...it sounds as if revision is what is probably needed

it must be so tough to not give up hope...when everything you try doesn't help, everywhere you turn, either people don't believe you, or they want to throw some pill or other at you, because they don't know what else to do...
i believe you will find a solution for this, & will, eventually, be able to help others with what you've gone thru...
just try to keep believing in yourself...
we all have a "gut instinct," and it tells you when the doctors are right, & when they don't know what the heck they are talking about!
i've encountered few of the former type, and, unfortunately, lots of the latter type!

at age 21, you should be feeling at your top form...you are way too young to be told to live with the pain...no one should be told that, least of all a 21 year old!...i know you will come out of all of this a stronger, smarter and healthier version of you!
hold on to that belief, listen to your brother...and try not to lose hope!

jess

[JDM555]

Got CT scan scheduled tomorrow at UCSF. Wish me luck. After that I will have a check up with Berven immediately to see if he can pinpoint anything visible from the scan.
John

[jrnyc]

good luck, John!
fingers crossed!

jess

[mbeckoff]

Good luck John
Hope you can get some relief

Melissa

[JenniferG]

I agree, it's unlikely to be RSD, which is quite rare. Be interested to know what Berven says after your ct scan. Good luck John.

[JDM555]

Ok, what a day. Well, I got CT scan at 1:30PM. Was out by 1:50. Went up to doctor, filled out survey, doctor came by around 3. He checked my CT scan and said the screws don't look loose and there are no signs of cracking in the bone, but he did say that the L2-L3 area doesn't look like it has enough "bone". He said that might be a cause of it not being fused properly. He said he wants to get a bone scan and a get a closer look.

He also said something about PEMF (Pulsed Electromagnetic Field Therapy) which he wants me to try for 2 months to see if that can heal some of the bone around the L2-L3 area. He said if that doesn't heal it, he can suggest trying to go back in and adding BMP over the area that isn't "well fused" and let it heal.

I got CT scans and X-rays on a CD though. I will try to get a few more opinions before doing any additional surgery for sure though.
John

[jrnyc]

well, good!!!!
a start!!
an answer to what may be causing all your pain!
i do believe it will lead to the right course of action, and i am so glad this is a doctor who believes you, and wants to make things right!!

good, good! so glad for you...you know, not glad you are in pain...glad you are getting to the right thing to solve the problem!

jess

[JDM555]

Update:

Well, after getting that appointment with the doctor, I finally got my SpinalPak II Bone Stimulator. I have been wearing it religiously for the past 1.5-2 weeks. I haven't noticed much different, maybe less cracking, but hard to tell if there is any benefit. Turns out L2-L3 had a failed fusion, or pseudarthrosis. And from the notes, L1-L2 also wasn't looking too good either. So that means 2 levels didn't have enough bone and had lack of fusion.

I have had 8/10 pain for the past 2 days. Out of nowhere just had pain. I tried swimming for a week and using the spa/steamroom and it did help me relax, but it did not fix my pain. I hope by the 3 months mark I will have a solution to my pain. If that doesn't work and the doctor still thinks the main problem is the lack of bone, he may open me up again and do/add BMT. I hope I don't need another surgery because I'm kind of fed up with pain.

I can only handle so much, and the amount of pain I've been in it's making it very hard to continue. I decided to take the summer off to relax, and very light schedule in Fall just in case I do need another surgery or if I need more time to relax. I think I will just continue to swim and relax this summer.

[jrnyc]

hey John
sorry to hear that the bone stimulator isn't really helping...
i hope swimming and relaxing this summer helps...i am sure it can't hurt...

i have been helped by sacroiliac joint injections...it makes no sense why they relieve 85% of my lower back pain, which is the worst pain i ever have...and i will be repeating them at 3 month intervals, getting next round August 9th....
what i am trying to say is that i wish they could find injections that could at least relieve your pain...i know how hard it can be to think straight at an 8-10 pain level!! it is so rotten to go thru surgery and not get the relief so hoped for after all the pain and healing you suffered through!
i suspect you feel like giving up on injections by now, since none have seemed to help you...i could not have been more shocked that SI shots could help me...
just goes to show doctors can't always figure out what will work...sometimes even they are surprised, too....
i really wish something out of the blue could help you, even if it didn't make sense either! i know how important it is to get out from under constant chronic pain!

i hope a restful summer will help restore your spirit....and help renew your will to go ahead with whatever remedy lies in the future...you have been thru so much...you surely deserve a break!

best wishes for a beautiful summer...
jess

[titaniumed]

John

With the amount of pain you have been going through we can understand how you feel. The good news is that the problems have been identified, and at least you know what your dealing with.

Having 10 level pain is not fun, I cant imagine doing anything at all....I don’t know how you do it. You must be inflamed beyond belief, it might be best to really slow things down and really take it easy for awhile.

Are you back on meds, or toughing it out?

Ed