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Kayde
05-08-2013, 09:49 PM
I haven't posted for a while as I have been trying to move through some post opt issues. I seemed to do really well for the first 5months except for such horrible rib pain I had trouble sitting up and driving so I began walking more and riding my bike. One night my left shoulder popped and when I got up the next day the arm was completely frozen. After 6 months of horrible pt it was determined I had to have shoulder surgery because the shoulder had been so over compromised that it became capsulated and 5 layers of tissue had to be removed along with some bone. 8 more ,on this of pt the shoulder moves but the rib pain increased. After some research it appears that the ribs have not been in the right place after they were located which resulted in rib dislocation pain. During the pt for the shoulder the ribs began to pop with immediate relief. I was very happy and felt I was on the road to the recovery I expected. Unfortunately it seems the left side had more room to move and the right side being less deformed from the rib hump also began to move slightly but because of the rods the are not moving in the right place and now i have pressure on the nerves. This resulted in such horrible pain like being hit with an electrical shock. I'm back to very little movement and I'm having some trouble finding a doctor that wants to help. Nerve block injections provide some relief but not enough to maintain independence. Pain managers want to put u on pain meds and meditation-pain meds do nothing for this pain. It's something I have tried to push through but this is bigger than mind over matter as physically I give out and can't do things no matter how much I want to do them. I live alone with little support so it's been difficult. I'm not really sure where to turn. I had the surgery after all those years because I had developed osteoperosis that had to be dealt with but the 40 degree curve turned into 73 in a little over 2 years so I though I was doing the right thing because the hip pain was so bad that I began to fall when walking, now however I feel a little hopeless. I know it's a process but there seem to be few dr's that really know what to do or even acknowledge problems.

Has anyone else had rib or shoulder issues after their first surgery? Idk if I've healed enough to have the rods taken out or if that's possible. Sorry so long I just normally don't have issues that last more than a few weeks so all this is new to me so any suggestions on who to see or what to do would be welcomed.

rohrer01
05-09-2013, 11:59 AM
Welcome, Kayde.

I'm horrified at what you are going through. I haven't had surgery. I have had some issues with my shoulders following the start of Botox injections. I see a physiatrist (specializing in physical medicine and rehabilitation). That might be a good place to start. The reason I had left shoulder and arm pain was because the Botox relaxed the upper trapezius muscle that had been rigid for so long. That let my shoulder down into a more normal position. The problem was that all of the other tendons, muscles, and nerves were used to being in the deformed position for so long that they reacted to the "new" position. I mention this because this was a very small amount of moving things around compared to a major surgery that completely reshapes your whole torso. I also developed tendinosis in my right shoulder. A chiropractor adjusted the shoulder and ended up ripping the ligament that holds the arm bone into the socket right off of the bone. Thankfully my left shoulder is mostly back to normal, but sore from overuse. The point is, shuffling things around can cause pain. If your hospital has a Physical Medicine and Rehabilitation department, it might be good to go there. Otherwise, you might look into seeing a revision specialist.

Of all the doctors that I've seen, the scoliosis surgeons are definitely the least empathetic and seem to have the least amount of knowledge about how the twisting of the spine affects the rest of your body. I know that's ironic, but they just seem to want to go in there and straighten it out and expect you to be all better. My surgeon was at least honest enough to tell me that surgery would make my pain worse. But as far as understanding how scoliosis affects the rest of the body, he seems to be lacking like the rest. That's just my opinion.

I hope you find the help you need.

jackieg412
05-09-2013, 03:53 PM
I can attest to the same things as you are going through. My right shoulder blade just gets stuck. So far with the help of a PT I am able to get it moving again. What is your rib pain like? Do certain things make it hurt more?
Since my revision surgery---up through the t-2---I have one side that feels like a raw nerve. Is that how you feel?Also ,it looks like the ribs jut out more on that side. It is real hard to ignore when it really acts up. Does anything help you?

Kayde
05-11-2013, 01:23 PM
I really didnt expect to find the lack of empathy or the tephlon attitude that nothing is their problem. Honestly problems can happen but tha lack of interst or urgency has been disappointing. I hadn't thought about botox issues being similar. I do think the left shoulder issue being left so long contributed to the trunk weakness. I did get an apology from the shoulder surgeon who told me he though I just wasn't being realistic about the pain and issue. I also find it crazy that people are left for years with rib pain when the ribs just didn't find a realistic place after the surgery. It happens but the longer it goes the more damage can be done

I have found some temp help with my primary. Idk what I would have done without him. So for know I'm pretty much on bed rest with some swimming to help get the muscles stronger to keep the ribs from slipping. I've had 27 nerve block injections between my ribs n the back with steroids. It may take a few months to get to a place where there are better options. I'm still considering removal of the rds when feasible as it seems the left side had more room to move so the right side seems to be moving on the nerves. Having ribs shaved I hear is possible. But idk if I could go through that either. Im pretty alone in all this and am thankful I can still work and they are letting me work from home.

When I first had the surgery I really thought I was doing so well so it has been a surprise. Not only am I looking for answers for me I don't want anyone else to have to live this way. When people see you they can't tell that you have issues. I'm going to chek into your suggestions.

Thank you
Kayde

Kayde
05-11-2013, 01:39 PM
I'm so sorry you are also having the same problem. When I first realized the arm went out that was really hard. The most disability I have experienced. And then when I discovered the left ribs were popping into a normal place I was happy thinking my life would be back to normal and there was a solution. I'm getting the shots to keep the pain down. It first felt like it was swelling a little or like a tight feeling. Then the being pinched from the inside like fingernails went to being squeezed by vice grips the next day. Then the real pain happened. If I move my arms or tighten my muscles between my shoulder blades the pinching hits me then it's like being shoved n the back by a hot screwdriver and then almost a shocking pain like someone hit you with a cattle prod. Which creates more muscle cramps. I had stopped doing ice on my back so much because the muscle cramps got so bad I was getting disfunctional. I got a biomat that stopped the cramps and was helpful in loosing up the muscles and massages- but now the fix for one is a more horrible problem for the other side. Main manager dr's give u meds and try to get your mind to ignore the pain. Which is all fine for some things but this type of pain doesn't even allow u to breath or move.

I'm hoping to find something over the next few weeks or months as I've learned. Pain meds no matter how strong doesn't even touch the pain.

There has to be answers- finding someone who wants to care and fix is the most challenging. My friend told me to stop looking for the best who only wants to process one thing and find someone who actually wants to buy into finding the fix. Sort of feel like the mystery diagnosis some days. I never expected to be pain free. I wasn't before surgery but nothing like this. I think most scoliosis patients gets that- but u also think we are more in tune to when there's problems. Dr's don't appreciate that. When I went to the hospital concerned I had done something the ER dr's spent an hour talking about the fusion (to L4) and how they had never seen so much metal and how awesome the surgery was....get tired of people admiring work when if it was t relief for the patient means nothing. They forget we can hear their conversations.


What are they doing for you?

JenniferG
05-11-2013, 04:23 PM
I can't help, just wanted to sympathise with you in this horrible situation. If you eventually have your rods out, please investigate some of the much-lauded surgeons on this forum who seem to be at the top of their field, if you can. Plenty here who can help you with names and their experiences. Hey, Lenke and Bederman have been much praised. Best of luck and I hope you keep us up to date with your progress.

Kayde
05-14-2013, 01:13 AM
I'm trying o find an answer. I appreciate the support. I need all the encouragement I can get. Dr lenke is on my call list. Trying to find pt. they r scared to pop ribs , also finding a chiro. I'm thin so the ribs stick out farther than rods like dino spines.

rohrer01
05-14-2013, 01:34 AM
I'm trying o find an answer. I appreciate the support. I need all the encouragement I can get. Dr lenke is on my call list. Trying to find pt. they r scared to pop ribs , also finding a chiro. I'm thin so the ribs stick ut farther than rods like dino spines.

My best advice would be to stay away from chiros. My scoliosis progressed after seeing one. Then, with my new anatomy from Botox, I've been having pain in my shoulders. The chiro literally ripped the ligament that holds my arm into the shoulder socket off my humerus (upper arm bone). Please, please, please be careful!!!

If you can find a good physiatrist (Physical Medicine and Rehabilitation), they are specially trained in the mechanical workings of the body and would be able to recommend some things or get you in to see a qualified physical therapist. If you can't find a physiatrist, you may also look for a kinesiologist. They are also medical doctors specially trained in body movement. Since my curves are subsurgical, I've found the most help from these kinds of doctors, although my general practitioner prescribes my meds. Pain specialists, anesthesiologist, can help with meds or other more invasive procedures that can bring lasting relief if you want to go that route.

I hope this is at least somewhat helpful. I just don't want to see anyone else make the same mistakes that I have made and end up worse off.

king14
05-14-2013, 02:59 PM
I just wanted to give my two cents with chiro.. i've seen the good the bad, the great and horrendous... But i have found that chiro's that work with an 'activator' are MUCH less aggresive. And they have helped me tremendously!! You literally dont' feel them make an adjustment at all. You can look it up on google. Its a very percise adjustment... just do your research. I thought my days of chiro were over, but they are actually helping me post fusion, more than my PT or Dr has. That being said, they don't live and die by chiropractic, they believe in a mix or western and eastern medicine... So I really appreciate that :)
Good luck! Frozen shoulder is the worst, and rib pain is the most painful!! My heart goes out to you, find help quick!!
Also - BODY WORK - not sure who metioned that above, but YES YES YES< we have to tell our muscles that they have a new home, and BODY work is the best i've done for me!!

golfnut
05-14-2013, 10:32 PM
I hope you can get an appointment with Dr. Lenke. I feel for you for all that you are going through.

Kayde
09-05-2013, 12:16 PM
I hope you can get an appointment with Dr. Lenke. I feel for you for all that you are going through.

I can't seem to get in with dr lankee. Getting shot n my back to keep thing in place. Rough. Ligaments over stretched so nothing stays n place. Left shoulder is going out again. I thought I was in fairly god shape with a not too severe curve. Been a shock. Now I'm barely independent. I'm thinking I will need to downsize and live with little to make it. My dr says usf can maybe help me. I hope so. Dr Moreno said I had a bad outlook and deeply depressed and said I needed mental meds. Told him when shoulder went out I began mental treatment from professional and had all tests for mental health including depression. Was found not depressed much to their surprise actualy. He told me I obviously didn't go to psychologist. Which I told him I saw the best one n my area. He gave me referral anyway as he felt I was lying. Very disappointed with his lack of concern and aftercare. Will never go back. Told me ribs do not move as it is physically impossible to move or dislocate. Other dr's were horrified to see that in his notes. I am considering having rods removed. I am physically worst now. If anything I guess I was too optimistic never had complications from anything before and had surgeries b4 and cancer treatment. This has been much harder, longer and more frustration to find someone who cares. And because u don't look disabled people treat you differently. That's rough too.

susancook
09-05-2013, 04:19 PM
Kayde, you and many others bring up an excellent point about needing a wholistic MD that can simultaneously look at ALL the body instead to just one part. I am caught up in a similar situation with headaches and have a neurologist, primary, pain control, acupuncture, physical therapist, mental health therapist, pharmacist at Safeway, scoliosis provider(s) ......that's 8 providers all putting their impressions, medications, treatments, etc. It's like the blind men trying to figure out what an elephant looks like and each one of them is just feeling one part of the elephant.

It would be great to have a team approach and have all of my providers in one room talking to each other. I agree that a physiatrist can be a good choice. I am going to see a Rehabilitation MD to try to coordinate everything.

Good luck in finding an answer to your problems. I understand your frustration.

Susan

PS: after posting this, I remembered an encounter w/ an ENT MD 20 years ago at Kaiser. I was having chronic sinus/congestion symptoms for months and my primary tried everything that he knew,then sent me to an allergy MD. I spent a few months trying all kinds of meds there and then he did a sinus X-ray and found that my sinuses were plugged, so referred me to an ENT MD. I worked at Kaiser so knew many of the providers, and also looked up the Top 100 MDs listing in my town. I made an appointment w/ an ENT and within 2 minutes of his reading my chart, he started w/, "Let me tell you the surgery that I will do". About one minute into his discussion about drilling holes into sinuses to drain them, I stopped him and said, "What are the other options that you could offer other than surgery (feeling that the surgery option was a little bit premature)?" At which point, he most arrogantly said, "Didn't you see my name outside my door, I'm a surgeon". Needless to say, that ended our relationship and he told me to come back when I wanted surgery. So, I called the allergy MD back and asked for another ENT suggestion. He sent me to a female ENT who looked at my chart and said, "Looks like you just saw an ENT, what do you want me to do?" So, I explained to her Dr. "I am a surgeon's" encounter, and then I said, "Maybe what I need is surgery, but I just wanted to see about ALL of the options for my problem". She then reviewed all of my treatments for the congestion to date, said that it looked like I had not been adequately treated with enough antibiotics for long enough, gave me a 3 week prescription for another antibiotic, and that was 20 years ago and I never did have ENT surgery. Lessons learned: 1) when you are a hammer, everything looks like a nail, 2) I need to start the conversation with what I expect from the visit, 3) if it doesn't feel right, run as fast as you can, 4) even the "top 100 MDs" can be jerks.

Confusedmom
09-06-2013, 11:05 PM
Kayde,

It sounds like you need a really good -- and I mean one of the BEST -- scoliosis revision specialists ASAP. What do you mean you can't get in with Dr. Lenke? Did he say your case wasn't bad enough? Where do you live? Maybe there are other good doctors near you. UCSF is where Linda Racine works, I believe. There are some really great doctors there. Don't give up until you find a surgeon who will help you!!! They are out there. PM me if you want the phone number for Dr. Lenke's assistant.

Best,
Evelyn