Revision Surgery in Colorado

[coscottsx61]

I am looking at having my rod removed due to flat back, severe pain and inability to walk. I go for a CT Myelogram on 5/27. I am terrified! The last time, 2 years ago, they tried to give me injections in my spin, to help with the pain, they couldn't due to my spine being in such bad shape. The rod is lose on top and bottom and the vertabrea are smashed on the bottom.

I am going to 2 different doctors (6/1 and 6/3) to see what they think they can do to help.

My original surgery was 11/1976 (my 15th bday) by Dr Huizenga in Milwaukee, WI. I am now 48 with 5 boys, 3 still at home.

Please pray we choose the right doctor and get something done for the pain.

[JulieBW]

Barb,
I wish you well in your journey. I frequently count my blessings that my fusion is thoracic, and I've had a lot of good years before starting to slide a little, nothing like what you describe. Yes, you are in my prayers.

[LindaRacine]

Hi...

I've heard good things about Dr. Kumar in Littleton.

Regards,
Linda

[JenniferG]

So sorry to read of your terrible pain, Barb. Just wanted to wish you well for the myelogram and for future surgery. Keep in touch and let us know how you go. Any questions, I am sure there will be someone with the appropriate experience who can help.

[Back-out]

Barb,

Please pray we choose the right doctor and get something done for the pain.

Yes, I am FWIW.

Sounds clintonesque, but yes, I really do feel your pain.

May it be relieved, soonest.

(I too have trouble walking - need a walker to stand or walk. Tilt forwards as I go, as if I had a tailwind! . Heh, I wish.) You sound as gutsy as your situation requires.

Do they know what's causing your pain? I.e., sagittal imbalance (sideways tilt such as results from flatback)? FWIW I have flatback too. Congenital, not post-surgical. So far as I know, once your normal lumbar lordosis is restored. this can be corrected in the hands of a gifted surgeon. Wishing this for you!

From what I've heard here, such pain can be managed surgically like a miracle - and in a way, the more pain, the more gratifying the surgery is apt to be. Godwilling.

Amanda

[coscottsx61]

Update

Could not get Myelogram done. Spine is to crushed and damaged. They could not get the needles in. I told they to give up and quit after 75 minutes. They did do a CT Scan. Next step - doctor appointment on 6/1 at 3pm.

[Back-out]

Oh, Barb. What a world of pain behind your message - the pain you are in now in general, and the pain of that hellish session of trying and failing to inject the dye. 75 minutes!!?!

I'm so, so very sorry for it. Poor, dear Barb. In my prayers and thoughts, stalwart woman. May they find relief for you pain even without the CTmyelogram.

Please keep us posted.

Amanda

[coscottsx61]

Disappointed

I was told today that I am "too high a risk for post-surgery problems." I have arthritis in my lower spine, flat back and am overweight. This doctor told me I need to lose 100 lbs before he would do surgery. Even then, he said it is risky. He wants me at 130 lbs and I am 250. He suggested I have stomach surgery then come back. I felt he was concerned with his success rate and only takes the ideal patient. I don't eat much, I just can't move or do anything. I tried a personal trainer for 3 months but I can't do much. No lifting, twisting or turning. Tried the bike but the movement in the hips hurt everything also. Going to another doctor on 6/3. See what he says. Kinda depressed....

[loves to skate]

Barb,
So sorry to hear about your situation. That catch 22 is a real bummer. Would you be able to do water therapy? It is much easier on your joints than any other form of exercise. I hope the next Doctor will be able and willing to help you.
Sally

[Wishing]

Dear Barb,

I would like to share with you that I recently lost over 30 lbs. using the "Take Shape for Life" program using Medifast meals. This has resulted in improved pulmonary function, significantly lower cholesterol and blood pressure. The meals are vitamin and mineral fortified and developed, I believe, at John's Hopkins University. The cost was about $300 per month. With my severe scoliosis, I was having difficulty breathing and my body just could not tolerate the extra weight. I had tried other ways to lose weight, but this program just worked for me.
Hope you feel better soon, are able to tackle that weight problem and have relief from your pain.

[twinsmom]

Sorry

Sorry for all the pain and problems. I don't if this helps any but my Mom has scoliosis - and went to an orthopod in 1940 as a teenager and was told to do excersize. She did them asn was well for decades. She now is 86 and the scoliosis has gotten worse and her back is a mess. Level 10 pain all the time. No one knows what to do. She is currently in the hospital now. She is being seen by another pain management specialist. That would be my only idea is a good pain management doc. Good luck! Mary

[coscottsx61]

Thanks

Been through the pain management group 2 years ago.Thanks for all the help. I also wish you all feel better. Life should be enjoyed and not lived in pain.

[Back-out]

I was told today that I am "too high a risk for post-surgery problems." I have arthritis in my lower spine, flat back and am overweight. This doctor told me I need to lose 100 lbs before he would do surgery. Even then, he said it is risky. He wants me at 130 lbs and I am 250. He suggested I have stomach surgery then come back. I felt he was concerned with his success rate and only takes the ideal patient. I don't eat much, I just can't move or do anything. I tried a personal trainer for 3 months but I can't do much. No lifting, twisting or turning. Tried the bike but the movement in the hips hurt everything also. Going to another doctor on 6/3. See what he says. Kinda depressed....

Dear Barb,

Of course, you're depressed! So sorry about the bad outcomes, but it may well be for the best. Risk of surgery complications is realistic and only an irresponsible surgeon would clear you if it weren't safe. Weight is a major mortality risk for anyone, bad back or not.

My brother (he just turned 63; I'm 64) is going through the education procedure required by all going through bariatric surgery which he has just planned. As older sis, I asked his weight and he said all he would disclose was that he qualified for the surgery. That was "enough information"! I guess his BMI means he is at least 100 lbs overweight,

It's not going to be any picnic but he's in pretty good shape otherwise (well, he exercises), but he DOES have to take three high blood pressure meds and had his first heart attack before he was 40. Lipids also only managed with medication, and he has to use a C-PAP machine, for sleep apnea. Bad back and knees too. His weight really IS a health hazard!

I 'm glad he's doing it, as I figure I'll have a brother that much longer.

With all your pain, I can understand you're very dismayed not to find surgery can provide relief now. Don't forget, though that you were given hope for the future. Some people are permanently disqualified. You have a modifiable cancellation issue. I hope it can serve as incentive to work for a healthier body and happier, more pain-free you.

You may not feel like it, but you're actually quite young! I'll bet you have far more resilience than you realize. Our bodies gravitate toward health, and yours can too.

You can't imagine, I think, how proud you will feel, if you take charge of your health, using modern medicine to assist you. Feeling good about yourself is key! Many people on this site who undergo extreme spinal surgery , report feeling tremendously "empowered" by having had the courage to go through with it.

You could have TWO reasons for feeling proud of a new you! And I'll bet your boys would be very proud of you too,

Amanda

[Back-out]

PS EDITED TO ADD Meanwhile, with your flat back (me too), smashed vertebrae and the broken rod (and more!) , I feel terrible for you about your unimaginable pain. I hope you attack that barrier to surgery, and also that somehow you can minimize narcotics exposure, meanwhile. You didn't mention them, and for all I know, you're not taking any, but speaking as someone who regrets relying on them for pain relief, I always worry about dependence in anyone like you suffering intractable pain. Please see the light that CAN exist at the end of the tunnel.

Note: Dr. Lenke is now ONLY accepting extreme curves and challenging cases. There's a wait to see him but it might give you time to think about bariatric surgery and even get going. No one will be in his OR until 2011 on out, besides, though appts are sooner. I think he's a surgical genius, a true scientist and a spectacular human being. I only wish I could afford to wait that long!

[coscottsx61]

Spine Update

This morning I saw the 1st doctor again. I discussed all my concerns with him. He was very frank and said that my weight is an issue but not a "risk" for the surgery. Being that I am in so much pain and cannot walk, he said it would be almost impossible to lose that kind of weight. There are risks with every major surgery including infection.

He said he needs to do 2 surgeries. There are 2 major issues - flat back and severe arthritis in the 2 bottom vertebrae not fused.

The first surgery will be done from the front of my stomach. A vascular surgeon will be responsible to open and close me. He will also be responsible to make sure no nerves or blood arteries get nicked. If the nerves gets nicked, then there is a high possibility I would not be able to walk. I have no cushion left between the vertebras. He will place in marrow from a cadaver between the bones to fuse them together. He will also use a rod and screws. Hospital stay about 3 days.

The second surgery will be 2 weeks later from the back. My current rod looks solid and well fused. He would cut an inch or so off the rod and position my spine like it should be. Then he would attach new rods and screws to hold it in place. If he gets in and my current rods lose, then he will have to remove it and re-fuse the entire spine. Hospital stay 5 days. Will have a brace to wear after surgery. Recovery time - 6 to 9 months.

So all this said, we go to meet the second spine specialist that will be helping with the surgery, friday at 2:15. Then we will be scheduling surgery in the next month. Before surgery there are lots of tests to be done and I am still trying to lose the weight. We will be very busy in the following weeks.

Please pray for God to direct the surgeons.