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

[jackieg412]

Oh Susan, what a year you have had! I hope the pain lessens and your trip goes well. My experience with revision is that it is not as hard as the original surgery. They caught my PJK before the disaster that you have experienced. I just had my 5 th surgery. This should have been easy but it has put me down some. Oh well. Happy thanksgiving to you and your family. I'd say keep your chin up but my sagging chin wants to drag sometimes.

[susancook]

Jackie, thanks for your support!

I totally agree that for me, the revision was minimal compared to the original. I think that it is because the original had all of the stretching of muscles, nerves, etc to bring the spine into alignment as well as the anterior and lateral incisions, the rib harvest, and the disc repairs.

I would be interested in talking to you about the surgery for your PJK. I will send you my email and phone number. I will also add your name on the growing list of those of us appropriate for the zipper tattoo. Maybe we could have a group rate?

Happy Thanksgiving!

Susan

[mabeckoff]

I hope that your trip goes well and that you have good time. I am having another revision surgery of many that I have had since 2010 , which was my first surgery. My next surgery is December 8, 2014.

[susancook]

Melissa, wishing you well with your surgery.

I am in Puerto Vallarta having survived the plane ride. My husband helped me to walk to the bathroom. It was quite a challenge! We are in a nice hotel that has some handicapped support in the bathroom. Fortunately, there are ramps everywhere at the hotel, so I can get around in my wheelchair. The pool is awesome for swimming!

I had 2 injections in my L T4 and T5 which truly helped! I am very pleased with the results and hope that the pain relief lasts a few months. Dr. Chen gave me a big bottle of Analgesic just in case the injections didn't help.

So now, I am working on increasing strength and balance. I have an appointment in January with a Physiatrist that works with people with spinal cord injuries. I look forward to her opinion.

Meanwhile, I navigate life in a wheelchair. Susan....Rollin' along in PV

[Marianne]

Susan happy to hear you flight was uneventful. Have a wonderful time in Mexico.
Thinking about you.

[PeggyS]

Yay, Susan - you're on a vacation in Mexico! I admire your strength & determination in coping with the flight. It sounds like an accommodating resort with the ramps. Enjoy the sunshine & pool. Keep searching for answers & healing. Lifting up up in prayer!

[mabeckoff]

Glad that your flight and vacation are going well. Enjoy!!!

[mkatz]

Vacation in mexico... where it is warm... that is smart! I'm Jealous.

Seriously, I'm impressed with your patience given all the "crap" you've been going through.

A red racing wheelchair... really?

mark

[fifa]

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

Oh, Susan - you're so sweet and funny, and I appreciate you thinking of me with everything you've been through. Thank you. I hope things are looking up for you. I pray for you every day, even when I was just lurking on the forum (before they got my ID straightened out).

I feel like such a whiner, too, especially when I've read about everything you've been through and lots of other people here.

I worked in medical transcription for two different hospitals for 22 years, then moved over to social services for four years. I know you're a medical professional, too, so we both know about the discharge goals that have to be met before a person can be considered for discharge. Even though Barnes is two hours away, they are very much in network, so when they discharged me with an obvious ileus (so obvious that you can see it on the plain x-rays they took after the fusion was done, I feel pretty strongly that they screwed up. Bad. My discharge goals were to ambulate with a walker for 350 feet, be tolerating a regular diet, having bms, able to climb 14 stairs, and have a pain level of no greater than two on oral meds. None of that happened. The only ambulating I did was with assist of one just from the bed to the commode. I wasn't passing gas. I couldn't keep down the clear liquid diet they had me on the ENTIRE time I was there, plus my best pain level, ever, was a seven out of ten.

All I've got to say is that when they admitted me here in Columbia two days later, again with such an obvious ileus on xray, they admitted me to Boone Hospital Center. Boone is part of Barnes-Jewish-Christian. I plan to have somebody's ass at some point, and frankly, I don't plan on paying a penny of the admission here locally since they should have never discharged me from Barnes to begin with.

The discharge coordinator didn't tell us that they planned on booting us on Saturday, so hubby came to visit in his tiny Nissan Sentra, a car I can't get in and out of on a good day. Had we know that, he could have brought my truck that I have no problems entering/exiting. I took some real offense to the care coordinator telling me that hauling my tired butt home in an ambulance was just "prohibitively expensive." I may have said this elsewhere, but I told her, "You know, I just signed papers saying I would be happy to pay $31,000 for the BMP the doctor needed to do my fusion, so truly, what's another couple of thousand bucks??" Being treated badly is one thing, but the absolute audacity is something else indeed.

I hope I was medicated enough to use the F word or two. (LOL)

For what it is worth, I don't think you're a whiner, and I really don't think I am, either (neither are most of us). Having worked in health care for as long as some of us have, and truly, even if you haven't worked in health care, you KNOW when something is just not right. You can count how many days it has been since you've have a BM, etc. You know when something is wrong. You knew when you lost control of your legs that there was something wrong - guess it just took too many "rocket surgeons" to figure out what it was. LOL Seriously, it's not funny, but anymore (since the early 1990s in my opinion), just just have to be your own advocate anymore. That's sad and I hate it.

I may have said before that a year ago in July, my mom had an anaphylactic reaction to an Aleve I gave her in a restaurant here for some back pain she was having. We knew she was allergic to Tylenol, but she had never had an troubles taking Aleve before. Long story short, we darned near lost her. As I was sitting bedside going over her discharge plans with her care coordinator, they sent her home with a hand-written prescription for frigging Tylenol with Codeine (for pain - I had broken her ribs doing CPR). Red allergy wrist band and the whole bit.

Makes me wonder what the hell happens to folks who go it alone. May God help them all.

Sorry for the rant. I've been thinking of you quite a bit and am not always up to posting. I hope you are doing well and that you get the intervention you need. You have lots left to do with your life, and I for one an anxious for you to get up and at 'em again. Please feel better soon. If there is anything I can do for you, please just ask. (big smiley)

Your friend,
Fifa

[susancook]

Incontinence is the pits....not ready to wear Depends for the rest of my life!

Update: I am seeing a urologist about having an implant for sacral neuromodulation. Since my spinal cord injury, I have had frequent urinary overflow incontinence in spite of timed voidings and second try urination. Wearing Depends is getting really old....it does cut down on the need to wash undies ;+}. I am from the Northwest and we recycle or compost everything....neither of which are options for Depends.

Basically, the Sacral Implant involves a "trial" with a temporary implant and if successful, then an outpatient surgery to implant the real thing. It is supposed to be as large as a watch dial and has a battery that has a 3-5 year life. Since the unit is made of a metal that precludes an MRI, that will be out for me. Minor point....also someone with an implant can't scuba dive more than 33 feet (I really like to scuba dive when I go to Fiji.....bummer!) There are other interesting limitations, but the potential benefits seem to greatly outweigh the risks/limitations.

I am still in Mexico and totally enjoy swimming in a warm water pool. We went downtown last night to a Flamenco dance presentation at the teatro. Of course, I was in my wheelchair and the experience of going rapidly over cobblestones and ruts in the road while dodging taxis was quite an experience. Wheelchair accessibility was a joke in bathrooms and on curbs. Mark told the guy that was selling the tickets that we needed seats on the aisle as I was in a wheelchair. We arrived an seats B 16&17 were on the aisle but up about 5 steps with no handrail. What was he thinking? Yikes! I made it, but it wasn't pretty!

Yours in sunny Puerto Vallarta, Susan

[hdsluckygirl13]

Thank you...

I appreciate you keeping us updated on your mental and physical state... For one that is still coming to terms with the idea of having this surgery, it helps allot to have someone like you posting... I admire your strength, and ability to find humor. I have become a reader on here, more than posting, as just have so much going on I don't want to babble lol. I still have your number, and will be calling you when you return to the states, I am in no hurry, and would rather not bother you on your vacation. Gentle hugs...

hdsluckygirl

ps. When we are both in the portland area, I will be taking you up on that coffee

[titaniumed]

Susan

Do you feel up to diving again? You could do a beach launch, and have someone bring your gear to you.....Can you kick your legs with fins on? If not, have somebody tow you with a rope.

1 Bar is fine......most of everything you want to see is in this zone.......Heck, you would probably go 2 hours on an 80. When you run out, go up and switch to the snorkel.

You’re a diver, you know what I’m talking about. Who needs air anyway! LOL

Use a 3/4 side zip shorty for your wetsuit. No sleeves, cutoff at the knees. Easy to get into.

Check out this article.....

http://www.wbaltv.com/Scuba-Diving-C...legics/8912200

Ed

[titaniumed]

Handicapped scuba links and vids....

https://www.youtube.com/watch?v=u5m_W08UyVo

https://www.youtube.com/watch?v=HRUzWbX9hbU

http://diveheart.org/about-us/about-diveheart/

https://www.hsascuba.com/

Ed

[fifa]

Update: I am seeing a urologist about having an implant for sacral neuromodulation. Since my spinal cord injury, I have had frequent urinary overflow incontinence in spite of timed voidings and second try urination. Wearing Depends is getting really old....it does cut down on the need to wash undies ;+}. I am from the Northwest and we recycle or compost everything....neither of which are options for Depends.

Basically, the Sacral Implant involves a "trial" with a temporary implant and if successful, then an outpatient surgery to implant the real thing. It is supposed to be as large as a watch dial and has a battery that has a 3-5 year life. Since the unit is made of a metal that precludes an MRI, that will be out for me. Minor point....also someone with an implant can't scuba dive more than 33 feet (I really like to scuba dive when I go to Fiji.....bummer!) There are other interesting limitations, but the potential benefits seem to greatly outweigh the risks/limitations.

I am still in Mexico and totally enjoy swimming in a warm water pool. We went downtown last night to a Flamenco dance presentation at the teatro. Of course, I was in my wheelchair and the experience of going rapidly over cobblestones and ruts in the road while dodging taxis was quite an experience. Wheelchair accessibility was a joke in bathrooms and on curbs. Mark told the guy that was selling the tickets that we needed seats on the aisle as I was in a wheelchair. We arrived an seats B 16&17 were on the aisle but up about 5 steps with no handrail. What was he thinking? Yikes! I made it, but it wasn't pretty!

Yours in sunny Puerto Vallarta, Susan

Hi, Susan -

I'm so jealous of your vacation - good for you! Sounds like heaven.

Knowing you from your previous posts and having very little experience myself with urology, the only thing that I can think of is a procedure that I can't even remember the name due to all the oxycontin I'm still on. I swear THAT evil med has removed the majority of functioning brain cells I used to have. LOL

I worked for a urologist who used to treat incontinence with something akin to Botox injections - basically to add some bulk to the opening so there wasn't near constant leakage. That and a "pessary" were the two things I've ever heard of. I knew of some people who used to wear a catheter and empty several times a day, but that doesn't sound like much of a solution for you. I hope you find a great solution out there.

I'm following up shortly with my nurse as my own bowel/urinary habits of changed, and I have no idea what is a "problem" and what is now "normal." I used to be able to hold my urine as long as necessary (typical secretary) until it was convenient for me to get up to go to the bathroom. It didn't take long at all to empty the bladder and be done with it. These days, I have just a trickle...seems to take forever. I'll ask what happened to that next time I see the doc, but I don't understand how that's all that happened or why it happened. It is like I have lost my ability to "push" either urine or feces.

Please stay well. I've not been writing much lately. Having a really hard time with my parents and my dad's surgery, plus the holidays, plus just extremely depressed that I feel as bad as I do this far out from surgery. This past Monday is/was the beginning of week seven (surgery was November 10th). The drugs may be helping some of the pain, but the mental anguish is really just killing me (can't sleep, can't think, can't spell, having a hard time communicating feelings, overly emotional, completely angry for no reason whatsoever, hopeless, helpless,......I think you all know the rest).

Hope you are doing well. It's just been too much lately to communicate. No fooling, every other word I type is incorrect. It's taken me an hour and a half to type this response to Susan.

Take care, all. Happy new year.
Fifa

[jackieg412]

Fifa, I was in the hospital recently for my 5th spine surgery. This is the first time I was told that while you are the strong pain meds it is hard to empty your bladder. Maybe pain meds are causing your problems.