Susan's surgery at UCSF with Dr. Hu on 19 and 22 March, 2013

[Irina]

I met with the doctors involved in my first hospitalization, the Internal Med and Neurologist and also my spine surgeon who finally did my surgery, Dr. Hiratzka and the Patient Advocate and the Risk Management person. My husband, brother, and son(family nurse practitioner) also attended.

The 2 doctors involved in my first admission apologized for their error in diagnosis. Having worked in the medical system for 23 years, it was good to be able to hear their concern.

Susan

Apology is good, but they owe you way more than that.

[Lizardacres]

Did you initiate this meeting or did they reach out to you? Did you feel better or worse after this meeting? I guess for me it would depend on whether their apology felt sincere or was just part of a risk management strategy. What they did to you is called premature closure, it means they did not have an open mind when diagnosing your problem and did not do their due diligence. Instead, they let their personal prejudices drive their decision making.

What they did to you was as emotionally damaging as physically damaging when they decided your initial problem was psychosomatic. That really hurts! I'm glad these docs saw the results of their actions. It won't help you but I am sure they will be more careful in the future.

[susancook]

Did you initiate this meeting or did they reach out to you? Did you feel better or worse after this meeting? I guess for me it would depend on whether their apology felt sincere or was just part of a risk management strategy. What they did to you is called premature closure, it means they did not have an open mind when diagnosing your problem and did not do their due diligence. Instead, they let their personal prejudices drive their decision making.

What they did to you was as emotionally damaging as physically damaging when they decided your initial problem was psychosomatic. That really hurts! I'm glad these docs saw the results of their actions. It won't help you but I am sure they will be more careful in the future.

Patient Advocate asked if I would like to have such an "encounter".

Not better.

Difficult to measure sense of sincerity, but I believe that it was genuine.

Emotionally damaging? I have a good therapist.

Susan

[babyboomer16]

????????? How are you??????

Hi Susan,
Just a line to say"hi" and hope things are moving forward. Are you walking yet?(without assistance?).
Do you have pain? I just think of you a lot. It's hard to deal with huge surgeries , let alone have a big deal
like this happening. I just hope you can get back to a good quality of life. We all have new normals~~~~
some are more daunting than others and hard to get used to! And this is starting over ~~what happened to you. Or I should say much "harder than starting over". But if anyone can have this kind of bad luck and give it your best~~ I believe it would be you. Please know I'm thinking of you and sending you my best! Warm thoughts of you, Linda

[jackieg412]

Hi Susan,I just wanted to see how you are doing now. I am praying you are improving. I sure miss your posts.we are about to change weather here in Chicago. Hating it already. I have my next and I hope last revision surgery next week. If it gets too cold here it will be hard to get out and walk. Freezing is not my idea of fun.

[PeggyS]

Hi Susan!

I just finished reading your thread to catch up. Thinking of the possibility of another surgery had to be horrifying!
I need to go back to read about your kyphosis above T3. I asked PT if I could look at myself in a full length mirror. I can see where my head is forward. I'm hoping if I'm diligent about how I hold myself in alignment early on,it won't get worse.
Susan, I'm praying you'll have the ability and strength to ditch that wheelchair!
What type of international volunteering are you thinking about? The world needs YOU! Uh, no pressure.
You've been a positive influence on this forum & a personal cheerleader for me.
Thank you! Have a strong day!

[susancook]

I started outpatient PT this week and my PT, who I knew from previous therapy was very excited to help me! That really made my day! I saw her for therapy the day before I went to the Emergency Dept in early August and she saw me hobble in with my walking stick and said, "Something's wrong with you, we are not going to do therapy today". Little did I know...

I get around mostly by wheelchair, but am walking as much as I can with an "old lady walker". I can climb stairs, but slowly and with great effort. I fell this morning as I tried to get out of bed. Bummed.

I returned to my spine surgeon, Dr. Hiratzka for follow up. He viewed my recent CT and said that he was not certain that the repair that he did for my proximal Junctional failure would hold and that I might need another surgery. I tried not to fall out of my wheelchair. Crap. I asked him how i would know that i was having a problem and he said, "increased pain or a change in the shape of my back". i asked him how much he would extend the fusion, and he did not know. He was "pessimistic" that the screw at T6 would hold, but "no need to rush off" and do surgery. There is also lucency around 4 screws. Visions of a ticking time bomb danced through my head. He said that if I had surgery, he would do the surgery with Dr. Hart.

I saw the urologist about my urge incontinence and we talked about a treatment that is like electrical acupuncture for 12 weeks. The treatment that I wanted, the sacral implant is not approved by Medicare for patients with spinal cord injuries. Disappointed.

I have an appointment in January with a physiatrist that specializes in spinal cord injuries. She comes highly recommended. I want to optimize my chances of the best recovery possible to maximize my potential. So, that's the good news....

Some days peanuts, some days shells.

Susan....just a-rollin' along

[titaniumed]

Susan, Have you ever seen Dr Hart? I wonder if it would be a good idea to go see him so he can start thinking about your case....

They have special screws with large flanks for osteoporotic bone.....

If this doesn’t work, we will just have to get you a tree stake.

Its hard for us to post as we feel so sad about all of this...

Thx for the report

Ed

[susancook]

Ed, I feel like a whiner when I read Fifa's problems. Shit happens to the best of us. Medicare has a paper that I signed that said, "if you don't think that you are ready to be discharged, you have a right to stay". It is so difficult to advocate for yourself when you feel so poorly like she does. Hope that she called an ambulance and got some appropriate care.

Yes, I have seen Dr. Hart 5 times and I liked him a lot. My decision to go to SF was based on the postop care that my son and dau-in-law could provide for 6 weeks postop. Otherwise, I would have felt that I was in good hands with him surgically.

Dr. Hiratzka put some huge long screws in when he did the revision. I knew that there was a problem when I received a message from Dr. Hu that said, "Did Dr. Hiratzka talk to you about the CT?"

I just want to get back into the mainstream of life and be "invisible".

Have an extra tree stake?

Susan

[titaniumed]

Ed, I feel like a whiner when I read Fifa's problems.

Susan, you have a perplexing situation with your spine falling forward the way it is.....whatever you say, we don’t consider it whining.....not at all. If something does happen, these guys are going to have to figure out how to grab onto your spine. Dr Hey’s “Hey-U” clamp in the prior post I posted, was interesting.....I would mention it to Dr Hart at some point since your situation doesn’t happen every day.

Fifa is fresh out of the oven, her ileus and pain situation is understandable.....the first few weeks recovering from adult scoliosis surgery can be daunting. I was barely functioning and in a world of hurt when I got home....She should have daily nurse visits like I had.

Please try to control your falling down somehow.....you know what I’m talking about. Lay some foam rubber down if you have to. You don’t want to be jolting your neck.

Ed

[hdsluckygirl13]

You help me try to figure out what to do....

Ed, I feel like a whiner when I read Fifa's problems. Shit happens to the best of us. Medicare has a paper that I signed that said, "if you don't think that you are ready to be discharged, you have a right to stay". It is so difficult to advocate for yourself when you feel so poorly like she does. Hope that she called an ambulance and got some appropriate care.

Yes, I have seen Dr. Hart 5 times and I liked him a lot. My decision to go to SF was based on the postop care that my son and dau-in-law could provide for 6 weeks postop. Otherwise, I would have felt that I was in good hands with him surgically.

Dr. Hiratzka put some huge long screws in when he did the revision. I knew that there was a problem when I received a message from Dr. Hu that said, "Did Dr. Hiratzka talk to you about the CT?"

I just want to get back into the mainstream of life and be "invisible".

Have an extra tree stake?

Susan

Susan,
Please don't ever feel like you are whining. For someone like me, that is just finding out that I finally should have surgery to fix my spine, it truly helps to have an honest perspective of how the outcome can be. I hope that makes sense to those reading this. I just think that it is important for anyone reading this forum to have the good and the bad, the real feelings and problems that can happen because of our choices and just because poop happens. I am truly sorry that you have had just endless things happen to you, I can't even imagine. But, you have taught me to never give up, but to continue playing the cards that I am dealt, no matter what. And to always try to find the humor in things.
It also helps that you speak of your doctors too. I have consulted with Dr. Hart a couple of times, and he has proposed my surgery to me. To know that he would be dealing with a case as complicated as yours definitely makes me feel comfortable and confident that if I decide to have the surgery, he is one of the surgeons for me.
I don't mean to make this sound all about me, I am trying to help you realize that you are not whining. You are merely being honest with how you feel, and to me I feel that is helping to inform us that are interested because we care. I will continue to keep you in my thoughts and prayers =)

[PeggyS]

Susan, you're not whining, you're venting. There's a big difference! Praying for you, my friend.

[jackieg412]

Susan we are your friends. And friends take care of each other. You have had an unbelievable journey. We are along to listen and give encouragement where we can. Sometimes family can't listen as much as friends can. Us scoliosis adults know what it takes!!you are in my prayers for healing.

[susancook]

L thoracic pain is a bummer. Unsure what causing the pain/burning. Tried cold [helps some], heat, TENS, and Lidocaine patches.....little help. Dr. Hiratzka has no suggestions. Bummed.
Susan

[susancook]

To my "groupies".... I love ya and need ya,
Update: After my last posting, I sent my pain management MD Dr. Grace Chen (her hobby is kick boxing....love it!) an email expressing my agony. She immediately scheduled a R T5, T6 nerve block with Triamcinolone (Steroid) and Ropivacaine (for pain relief) before her clinic day as her procedure day was booked. Before the procedure, she said," one of the possibilities is that you might have a pneumothorax from this procedure. Then you'd have to ditch your trip to Mexico on Saturday. Are you sure that you still want to do this?" I asked her how often this happens, and she said, "I have done over 100 of these and had one pneumothorax, but he wiggled a lot". I signed the consent and handed to her and said, "I don't wiggle". Unfortunately, I am still on Warfarin from my PE with my revision, so she used a 25 gauge needle and a Resident (remember "teaching hospital"), a huge Fluoroscopy machine and went at it. Really no pain with the procedure.....and no pneumothorax. Good news is that my pain was decreased for about 6 hours...and then slowly returned. Hoping that the steroids kick in soon. Then she gave me a bottle of hydromorphone just in case. Should go well with my Margaritas in Mexico!

My new CHERRY RED racing wheelchair is in the hands of Medicare for approval. Wish me luck.

So, now I am primarily in a wheelchair, but using a walker as much as I can. I still have a couple of times a day body spasms, which I have reframed as muscle building exercises. I started warm water exercises and will rejoin my gym. The medical personal trainer will figure out what I can do. It was bad enough when I was walking on the treadmill next to three fit-latex-body-fitting-outfitted chicks running miles on the treadmill. Now, my wheelchair puts me in another category. The slow one. Treadmills scare me.

I live under the black cloud of the haunting words of Dr. Hiratzka....."I am pessimistic that the screw will hold." He also wants a meeting with Dr. Hart. Since Dr. Hart is an expert in proximal Junctional failure surgery, my guess is that the revision might be in my future. I'm thinking that Dixiesmom and I can get zipper tattoos on our spines.

Some days peanuts.....some days shells.

Susan......a'rollin' along