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

[Marianne]

Great your Inter-Stim procedure went well and your are noticing a difference allready.
Don't forget to post a picture of your wheel chair!
Keep on rolling!

[PeggyS]

Susan - So happy to hear the trial was successful & now you'll get the real deal! I'll be thinking of you on Friday!

[susancook]

The Inter-Stim is working out well as it has greatly decreased my incontinence. I am actually wearing my own undies and a poise pad. I still keep the Depends handy, but do not anticipate needing them.

I had a D&C last week for post menopausal bleeding. I get the results from my GYN in about 10 days or so. Last thing that I need now is uterine cancer diagnosis.

My intensive PT is coming along well. I see 2 different PTs at the same place, one does mostly walking and the other specializes in spinal cord injuries. Both PTs are very positive oriented people and feel that I will be walking on my own eventually.

I have an appointment with Drs. Hiratzka and Hart in about 2 weeks to look at the T4-5 screws and fusion and to make some sense of my thoracic back pain. It continues to amaze me how dealing with medical people is such a challenge. When talking with Dr. Hiratzka, the emails are answered by his PA. She says for me to check with the Pain Management doctor about what to do and the pain management doctor says to check with the surgeon about tests that he my want to do to clarify the thoracic pain. She is offering me long acting opiods which I have refused. So far, I use cold packs and Lidocaine patches. I have some short acting Dilaudid for severe pain, which generally means going to bed.

My life revolves around doctor visits and PT. I do not drive yet as I need to make sure that I have enough coordination for operating my car and that I can use crutches after I arrive at a place, or can get my spiffy new lighter weight wheelchair out of the back of my car [and then reload]. I have tried to go to the gym, but my wheelchair did not fit in between the apparatus that was suggested by my trainer. The warm water pool was occupied when I was there this week. Got to get better organized around their schedule. I have hired a female companion who can help me get on and off various machines in the gym and help me in the pool.

All I want is to be back into the mainstream of life and with the ability to drive myself, I am limited. I am busy writing grants now which is great for my validation of the part of me that wants to change little parts of the world to be healthier and to drink clean water.

I apologize to everyone that I have not been into supporting your endeavors or offering advice. I am very much into being ME and taking care of myself to optimize my recovery.

Susan...."it is what it is"

[golfnut]

Susan,
You are always a huge support for everyone on the forum, but as you said, you need to focus on your own recovery so that you continue to progress. Everyone understands!

[susancook]

Inspirational....this speaks to me

"Everybody gets dealt a hand in life.
Some get dealt better hands than other, but at the end of the day this is the hand of cards that is yours."
Susan.....it is what it is

[fifa]

"Everybody gets dealt a hand in life.
Some get dealt better hands than other, but at the end of the day this is the hand of cards that is yours."
Susan.....it is what it is

Hi, Susan -

Your quote speaks to me, too. Thanks for posting! Glad your procedure went well and you seem to be moving right along. Prayers going up for you!

Fifa

[babyboomer16]

Hi Susan,
It sounds like you are working hard at your physical therapy and everything else. I know what you mean about how amazing it is at the amount of time trying to connect with your Drs. Or any medical provider whatever a person may need. Frustrating. And gets old. I do wish I lived where there were more experienced PT doctors. The ones here just havn't had enough experience with this my type of issues. I am
Glad you feel they are making progress. I want you to know I think of you often. It means so much to see your post, but we completley understand why you need complete concentration on you !! I am not due for my 2yr. Check up till May. But I am having some issues with pain in my neck, upper thoracic screw area, and low back. So Dr. Lenke needs to give me some time, as these things are causing other symptoms that
need addressed. If Ya know what I mean. Well, keep up the hard work. I know this has got to be one day at a time my friend. But you can do it!!!! That's why reading your post are so inspiring. From this end anyway.
Praying and thinking of you~~~ Linda

[susancook]

To Linda and others: Thanks for your kind notes.

Re D&C: benign

Re Inter-Stim: Decreases incontinence but not as much as I wanted. I am happy with the results. Rereading that.....sounds like I am ambivalent. Not really.

Appt for Screw injections next week.
Appt with Drs. Hart and Hiratzka next week for look at fusion and maybe redoing a couple of screws.

PT continues 2-3 times a week.
Walking w/ crutches some but it greatly increases back/thoracic pain.

Life goes on. Spinal Cord Injury now x 6 months. Recovery slower than I would like.

Susan

[jackieg412]

It is good to hear from you. Those crutches must be so hard on your spine.

[PeggyS]

Susan - I'm continuing to pray for your recovery. It must feel like a very long 6 months. You have a fabulous positive attitude that probably doesn't come easy at times. I am so inspired by the way you've found a way to help those in need, by writing grants, when you can't be in the mission field, in person. That shows how determined you are to overcome the obstacles in front of you.
Thank you for the update, while you're focusing on your recovery. May you be blessed with continued progress.

[babyboomer16]

Thank God the biopsy was benign! It is so scary, when things have happened to you that you never thought possible, to wait for a test result, as I'm sure you're terribly paranoid now , ( rightfully so!) you are so lucky to have good therapist
that know what they're doing. That's our prayer for you!! Good to hear from you~~~ be good to yourself. Wish I was closer so we could have a cup of java and cry in our coffee! (smile) well? What a conversation that would be! (big smile) We can talk spine like no one else! Have a great healing day my friend. Warm thought of you~~ Linda
P.S. Are you still living in Washington?

[Lizardacres]

Love your quote, I feel the same way. Some days it's hard not to think about the should have, would have, could have if things had been different.

Many, many posts ago, you said that Dr Hu was not completely satisfied with the correction she was able to achieve and that you still had kyphosis somewhere up high. Is your curve balanced now? I just wonder if it is not balanced if that is putting excessive stress on some of your screws. Have the docs discussed this with you?

[susancook]

Gas Bubbles, Fractured rods, Loose screws.....oh, my!

I will make this short: Saw Dr. Hart today with new x-rays and more thoracic back pain. I am bummed about the pain and now have pain with movement and just sitting down/driving over bumps.

X-rays showed "gas bubbles" [unsure what that exactly means?] and fractured rod, and loose screws. Surgery would involve thoroscopy??? probably spelled incorrectly....and unsure what else. I was taking notes as fast as I could and trying to understand what he said. Surgery maybe in April as he wants more studies.

I just want pain relief.

Susan.....ready for Round #3, bring it on!

[Lizardacres]

Third time has to be a charm, right? Where is your rod broken? Hopefully by having time to plan and by just having to focus on a specific area they can get you completely fixed up this time. Hang in there.

Driving is really the pits! I have a special foam pillow I won't leave home without. I'm not driving yet and just try and stay out of the car as much as possible. Yay for Kindles, Netflix and Apple TV.

[susancook]

Third time has to be a charm, right? Where is your rod broken? Hopefully by having time to plan and by just having to focus on a specific area they can get you completely fixed up this time. Hang in there.

Driving is really the pits! I have a special foam pillow I won't leave home without. I'm not driving yet and just try and stay out of the car as much as possible. Yay for Kindles, Netflix and Apple TV.

Rod broken at T10?? I think.