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

[jackieg412]

Did you make it home and how are you?

[susancook]

3 month visit of Surgery #3

I just had my 3 month visit of surgery #3 at OHSU. Xrays looked good....which was awesome as the xrays at my last surgery showed a problem at 6 weeks! Needless to say, that was a great relief!

I asked Dr. Hart his estimate of whether I would need to have my lumbar hardware removed [hardware infection was discovered at the surgery]. He said, "25-35% or higher" which means that the answer is not "24% or less", I guess.

I am doing well in general [for someone with a spinal cord injury, I guess]: wheelchair and crutches, Forteo, bone stimulator, AFOs, and physical therapy 1-2 times a week. I continue to have lower extremity weakness, overflow incontinence, some numbness from under my breasts down [T4-5 and lower], hypersensitivity in parts of my skin, cold feet, occasional body spasms, some buzzing sensations in my feet [all from my spinal cord injury], and tight neck muscles. I stopped using my brace and neck collar a week ago, so my back muscles as a little bit sore, but that should get better with time.

Here's to continued healing!

Susan
sorry about the sideways views. I consider it a major victory that I was able to post photos!

[mabeckoff]

Glad that you are doing better.
I hope that you continue to heal

Melissa

[Susie*Bee]

Great job posting those x-rays! They look pretty good. Now to see how you are feeling in a bit. What a long journey it's been and you have been such a trooper. I am so proud of you and your strength/stamina. Sending hugs...

[titaniumed]

Susan, Those are some x-rays! I righted them up for you.......

Good to see you are doing better.....

I also included a little x-ray humor....... it seems that Curly didn’t have scoliosis per Dr Moe, and Dr Larry.

Keep smiling....

Ed

[Marianne]

Susan that is a lot of hardware you have in there!
I bet you will set off all the alarms at the airport.
Good to hear you are doing better, you are always in my thoughts.

[PeggyS]

Thanks for the progress report, Susan.
I'm glad you're healing is improving. You've sure been through the wringer! (I bet young folks have no idea where that saying comes from)

[susancook]

Thank you everyone for your healing thoughts and good wishes and thanks Ed for fixing my xrays.

I belong to another support group, an Oregon spinal cord injury [SCI] group. We meet at a local brew pub on the last Monday of each month as well as communicate on Facebook on our group page. Beer and hard cider drinks made mixing easy. Everyone is in a wheelchair [sometimes with crutches tied on] and most of the participants are men who rolled their pickup or motorcycle. The gender ratio is about 8 men/1 woman and about 50 people attended last month. There are people with complete spinal cord injuries and some with partial, some quads and some paras.....etc. Some people have had injuries for decades, while RIO [Rehabilitation Institute of Oregon] is a few blocks away and a few SCI inpatients sometimes attend with very recent injuries [usually obvious since they have the "deer in the headlights" look]. Support persons are also welcome. It is a very relaxed atmosphere where one can ask just about any question of attendees. It is interesting that it feels so much less invasive for a fellow SCI to start the conversation, "So, how did you have your SCI accident?" than to have someone not injured in other arenas who ask the same question. We share helpful hints in doing activities, resources, stories of incontinence, etc. I wish that all of my friends on this forum could get together monthly to chat casually at a brew pub!

I am working on using my crutches more which causes upper back and neck pain. Dr. Hart asked me at the 3 month visit if I was back to pre surgery walking ability and I had to answer "not yet". The rehab is a long road as the spinal cord injury always limits my progress. I continue to have decreased sensation below the level of my injury.

Hope that everyone is having a great summer!

Susan

[jackieg412]

Susan I am glad that some progress is being made. Slow but sure. I hope it continues for you. In Illinois summer has arrived.

[susancook]

I continue in PT, usually 2x/week. Doing home exercises and walking with Canadian crutches. I have a lot of pelvic tightness with walking and wonder if it is related to my broken pelvic screw or if it is from my spinal cord injury. My Physiatrist says that pelvic tightness is common with spinal cord injuries [SCI]. I continue to take Cephalosporin for my spinal cord infection and will take antibiotics for the rest of my life. Guess that I am immune to just about any infection.

Thank you for all of your support and kind thoughts. I am working hard on recovery and am determined to become independent.

Susan

[susancook]

CT done....??? lumbar fusion, SI Joint pain!

I have had continued progressive lumbar discomfort of sacral/pelvic tightening when I walk. Dr. Hart ordered a CT exam: questionable lumbar fusion [surgery 1.5 years ago, but have a spinal infection and he changed out the thoracic hardware last time, but thought that the lumbar hardware looked OK when he looked during the surgery]. He suggested that I have a steroid injection into my SI joint, I had that done yesterday. The new Spinal Fellow [after all, this is August. I asked him if he had done the procedure before and he told me that he had watched it on YouTube twice this morning. Love the humor!] under the very involved eye of my pain management heroine, Dr. Grace Chen accomplished it without any anesthetic [what was I thinking? saving Medicare $? trying to prove that I am a strong old woman? I almost vomited in the room from the pain as NPO for 8 hours before. Next time, take an anti-emetic and IV anesthetic!] The injected anesthetic worked on my sacral pain for a few hours....heavenly..... and I am waiting for the steroid to kick in.

Dr. Chen was uncertain if my SI joint was fused or not. I told her that I did not think so, but something on the fluoroscope lead her to believe that it might be. Due to my limitations in turning my neck, I could not see the screen. I will check with Dr. Hart or Hu. She said that if this did not work that she had other possibilities to try, injection wise. Love this woman! How can you not love a Pain Management Anesthesiologist whose hobby is kick boxing?

During my pre-op visit in March, Dr. Hart suggested that that surgery would be my "last". Famous last words. Now he is hinting that I might need to have another surgery some time in the future to replace the lumbar hardware due to my spinal infection. This does not worry or upset me as my review of the literature has led me to believe that surgery to replace lumbar hardware might be the remedy.

Despite my complications from surgery, I am glad that I had it and will move forward with PT and whatever happens. My Physiatrist told me when I was whining in my last visit, "You got what you got". I love her directness. I control what is under my influence and keep tight reign on my doctors and follow-up.

Susan

[Susie*Bee]

Susan- Bless you and your situations! I am always amazed at the calm way you update us and are able to throw humor in even though the situation is anything but funny. So sorry for the pain you underwent during the steroid injection. I'm glad the "fellow" watched the YouTube twice rather than once...

Your physiatrist's saying reminds me of a couple of sayings we used to say at school to the kids... "you get what you get and you don't get upset" (right!) or "you git what you git and you don't throw a fit"... (Hoosiers and some states nearby can be prone to use the "git" word...) Regardless, words are words and they often just don't cut it. You are something else, though.

"Love this woman! How can you not love a Pain Management Anesthesiologist whose hobby is kick boxing?" That's a classic. Hang in there. Praying for you, friend!

[jackieg412]

Susan you are amazing. But I guess all we can do is keep going on our way even if we have mountains in our way. Bless you.

[PeggyS]

Well said, Susie Bee!
Bless you, Susan, in your ongoing quest for solutions. You're upbeat determination is an inspiration!

[JenniferG]

I'm adding my agreement with others here. Your posts always amaze me with your calm, your coping, and your humour. Best of luck, Susan!