I have another appointment!!

kc0iet · #1 (**permalink**) 05-25-2009, 10:39 PM

Hi All,

I'm sorry I am not on the boards as much as I would like to be. Some of you may remember my story, others may need to search (if you are interested), but after much waiting and praying and waiting and etc... I HAVE ANOTHER APPOINTMENT!

I am very excited as I really feel hopeful this time. I don't remember if I even updated you about my wasted trip to St. Louis to see Dr. Birdwell, but it was a waste of my time, effort and money.

With Marks help, I have an appointment with Dr. Coufal in La Jolla on June 4th. Yepee! I have only been to CA once that I can remember and once as an infant. The once I can remember was just a quick, drive through business trip to Fresno. I wish I would have the time to enjoy the trip, but I know it is going to be VERY difficult. I am just trying to remain hopeful that the trip will be fruitful. The three hour drive to the airport, six hour flight and airport time to and from home each way is really going to be difficult but I really do feel hopeful for the first time in a long time.

Now if I can just figure out how to take public transportation from the airport and then to and from the hospital I will be all set! Are any of you from the San Diego area that know how accessible the public transportation system is?

Well, my dinner just arrived so I have to go for now.

runner · #2 (**permalink**) 05-26-2009, 02:20 AM

San Diego has a trolley system and train system. There are also connecting buses. I'm not sure about La Jolla. There may be some time between connections.

kc0iet · #3 (**permalink**) 05-26-2009, 04:01 AM

How about wheelchair accessibility?

dridobits · #4 (**permalink**) 05-26-2009, 04:23 AM

Call the hospital and tell them where you are arriving and that you need transportation instructions! I am sure someone there will be able to help you. Very best of luck!!!

Maria · #5 (**permalink**) 05-27-2009, 06:56 PM

There are trolleys and buses in Old Town or Downtown that go to La Jolla and most likely to the location of the medical office/hospital Dr.Coufal practices at however you might want to consider just taking a taxi or private limo as the bus ride and maybe transfers might be difficult and while the trolly is rapid wherever it goes I dont' think it goes there..

I'm in San Diego right now if you want to give me a destination where you'll be I can find out about how to get to Scripps La Jolla (Is it Scripps or Sharp Hospital area)?

Anyway, Congrats.. you'll like this doctor as he was the deciding factor for my 2nd surgical opinion back in '06 (I did not have the surgery tho). Younger man who is thorough in his assessment and exam and very direct and level with his doctor-patient rapport. He is nice looking to boot ladies!

The multi level fusion patient that was in his waiting room when I was there raved about his surgical work.. he had driven I think he said 3 hours at 6 weeks post op for his appt. (wow!)!

kc0iet · #6 (**permalink**) 05-29-2009, 07:50 PM

Maria,

Thanks for the reply. I have been going nuts trying to make arrangements for the trip. I don't think a taxi or limo is an option. My chair is a really big, heavy power chair. Do they have taxi/limo service in San Diego with wheelchair lifts?

Please realize that I live in a very rural area that does not have a public transit system AT ALL.

I have contemplated taking my manual chair, but the trip would be much more tolerable and enjoyable if I have my power chair.

I have been downloading and printing bus schedules etc. all week. I am so excited about the trip that I can't sleep. I feel like I have been awake for a week!

Maria · #7 (**permalink**) 05-29-2009, 09:55 PM

Kc,
the city buses are able to accomodate wheelchairs and I think power ones as well as one man got on with one and they have the area that you are hooked into (the bus driver assists w/this). However I think there is only one space like this per bus, maybe 2 but if there's already one powered w/c on the bus the wait might be over 1/2 hr for next bus. Bus ride in SD to La Jolla w/transfers might be quite a bit of time as well (over an hour). Being as close to your doctor's appt. as possible yet still on a bus line that could get you there would be most feasible and then allowing for extra time re bus wait/travel is important.

The trolley is a pretty rapid type of on off situation.. the doors open and people jump on and off and I've not seen someone in a power wheel chair before doing this altho that doesn't mean that it's not done.

Now the buses like Greyhound don't seem to be able to accomodate w/c's as they have a stair to climb up that is difficult even for me as an ambulatory person if I'm carrying something. Very steep and the aisle is narrow.

City buses are your best bet but I'm not even sure if taxi drivers will deal with power wheelchairs. I'll inquire re limo service for power chairs but regular taxi service may not help with lifting of power chairs because of possible injury .. not sure but can call several taxi/limo services for you if you'd like.

All of this is something I can call and inquire about if you'd like. You can pm me or send me an email at my reg email which I'd give you in a private mail or even my phone number.

I was afraid of public transportation or even going out much for a while but forced myself to get out there which came with me being a bit stronger and more ambulatory but I know there is transportation for persons with wheel chairs and power chairs like Dial a Lift and such. Some arrangements such as this have to be made 2 weeks prior to the appt. though so the regular bus system might be the best altho it will take some endurance I think in terms of waiting at bus stops. From what I saw the drivers are really patient and kind in San Diego.

I don't know if you've someone accompanying you tho if not I could try to accompany you to the office or however the situation would have to be arranged
I'd offer to accompany you re the bus system (I don't drive on the freeway) if I'm able as my neck is a bit squirrely lately.. I'd surely try tho if you're going to be alone. I can be in San Diego pretty easily myself by hopping on a bus from where I live (2 plus hour ride) tho I would do that a few days before so as to be rested and positioned to help.

I'd leave you to your privacy re your appt. and just try to be part of getting you there w/o snafu's if' you'd like or at least call and try to ferret out information for you.. just let me know.

kc0iet · #8 (**permalink**) 05-30-2009, 02:45 AM

I sent you an email

runner · #9 (**permalink**) 05-30-2009, 10:09 PM

Maria,

that is so kind of you to help out Kc.
I know strange cities can be frightening. La Jolla is really nice, though.
I could not imagine having to be in a wc and navigating routes and such.
Just want to say it was nice of you to offer to help him.

Runner

Maria · #10 (**permalink**) 05-31-2009, 12:03 AM

Hi kc
I've been out most of the day tho did go to the transit website which I'm sure you did for SD and La Jolla. I know for a fact the buses will accomodate tho from your original destination you may have a number of transfers to get where you're going and there may be other person's with w/c's like your w/c.

I have been on the bus in SD a number of times when it stopped for someone in a power w/c and they had to let the ramp down and then the driver actually helps to strap the w/c into place in the special designated area for a w/c. The drivers are quite helpful.

I was going to call "yellow cab" for SD area as I use them all the time and I believe that they utilize a van to pick you up if you have a w/c but I have to check.

At the moment I'm back in Long Beach tho still finding out SD info is easy enough for me as I get on the Greyhound or Amtrak to go there often enough as my PM is at Scripps Mercy Hospital Medical Center.

Runner~ I wish I could be more helpful to those that come to this area.. I don't drive on the freeway and I have enough stuff of my own that limits me tho I do like to be as helpful if I'm able. You know it's that nursing thing!!!

kc back to you will further check things out and email you

kc0iet · #11 (**permalink**) 06-11-2009, 01:04 PM

Hi all,

I am not very good about keeping up with the boards. I started this thread a couple of weeks ago about my new appointment.

To make a long story short... I was admitted to the hospital on Sunday and have undergone several tests and procedures. The surgeon has determined that all of my hardware, the two Chartie ADR's, the PLIF at L4 and the SCS must be removed so that a 360 fusion can be done correctly.

So, as the title mentioned - I am scared silly. All of this is to take place this Friday morning first thing (that is tomorrow!). If you wouldn't mind sending me all of your positive mojo, prayers, etc. I would be greatly appreciative.

Thank You

Maria · #12 (**permalink**) 06-11-2009, 05:45 PM

Kc,
will keep you in thoughts and prayers for Friday's surgery.. it'll be big tho w/dr.C I think it'll be right

jessmith07 · #13 (**permalink**) 06-11-2009, 06:55 PM

Kc,

I have been reading all of your previous posts to get the picture of what's going on (now that I have a little time on my hands, I'm going back and getting to know everyone a little better). I hope and pray that this will truly be your LAST and MOST SUCCESSFUL surgery. (I also just read that you got your Bachelors recently, WOW! Congrats!!!) With all that you've been through, you deserve relief, and you are in good hands. I'm glad to see that they are addressing your needs so quickly. I wish I could be there with you, but know that I will be there in spirit. I know that this fusion is what you've fought so hard against, but there are MANY people out there who have gotten the releif that they've sought from fusion. You tried your best, Dear...you fought hard, but please don't think that you've lost just because you're having this revision. YOU have done an AMAZING job of advocating for yourself, and you will come out of this and STILL be AMAZING!

Can't wait to hear more and watch you grow after this procedure.

Jess

dshobbies · #14 (**permalink**) 06-11-2009, 09:07 PM

Kc,

My, that is fast! As least you won't have time to dwell on anything. Once you know the direction you're taking, the sooner the better. My thoughts will be with you and I hope you get the relief you so seek.

Please let us know how you're doing as soon as you're able. And good luck -

My best to you, Dale

kc0iet · #15 (**permalink**) 06-12-2009, 08:03 AM

It is now midnight. I just requested the last of my oral meds - sleeping pills, Valium - Imatrex and Zofram. Nothing else by mouth, so I am going to make my last phone call, shut down the computer and continue my prayers.

I will try to update you all someday soon.

Katie · #16 (**permalink**) 06-12-2009, 04:39 PM

Godspeed. Our prayers are with you.

mmglobal · #17 (**permalink**) 06-13-2009, 12:03 AM

1st 1/2 of surgery is over. Actually, it's more than 1/2... the anterior portion of kc's surgery is done. Both Charite's explanted and anterior cage configuration looks great. I'll let kc decide how much detail to tell. Susan's graduation from UCI is this afternoon. (Degree in sociology/education, with honors!) I could not stay for the posterior surgery. I'll update everyone as I hear more.

All good so far... please keep kc in your thoughts and prayers. All the best,

Mark

Michelle Maree · #18 (**permalink**) 06-13-2009, 04:00 AM

Kc, you sound like an extremely strong woman for what you have enured and handled with such grace. You deserve a miracle! I send you my prayers and hope for a speedy recovery and the beginning of a new life.
Michelle.

mmglobal · #19 (**permalink**) 06-13-2009, 05:58 PM

Quote:

Originally Posted by Michelle Maree

Kc, you sound like an extremely strong woman for what you have enured and handled with such grace...

Michelle... I wish I could say that I handled my issues anything like kc. She has been in such pain, yet has managed to complete a university degree against all odds. I can't wait to see how she does after her surgeries.

I just spoke to her and she's still in ICU and is expectedly VERY uncomfortable. I'll post more later,

Mark

Michelle Maree · #20 (**permalink**) 06-14-2009, 06:21 PM

Thanks Mark for the update. You are a very kind man for being by her side during surgery. I am sure knowing that you were there watching over her made it a lot less frightening for her. Tell her she is in our thoughts and prayers.
Please keep us posted.
Michelle.

mmglobal · #21 (**permalink**) 06-16-2009, 06:15 PM

Update from yesterday:

I just spoke to kc... she said I could post for her. After I left on Friday, they decided to postpone the posterior portion of her surgery. The anterior portion had been about pretty long and they felt it best to let her recover a bit. As expected, it's been a tough few days, but she's one tough lady and is taking it very well. They are not letting her get up and around very fast. She did stand up yesterday and said "it wasn't too bad!" I'm very anxious to hear how she'll do once she's getting out and about a little.

It was very hard for me to watch her move during the doctor's appointment because she gets so much pain with any weight bearing activity. I'm very hopeful for her outcome because her pathology was so profound.

While we were speaking... the doc came in, hence the interrupted update. Hopefully, she'll be up and about more. I'll post more as I know it.

Mark

dshobbies · #22 (**permalink**) 06-17-2009, 06:02 PM

While I certainly understand a surgeon's preference to continue a difficult surgery at a later time, as a patient, it would seem to only prolong the suffering. The first days following any surgery are painful and difficult. I remember Dr. B telling me that he wanted to do my 4 level in two separate surgeries. I was horrified! (I ended up with 3 levels)

Isn't letting her heal for a few days somewhat cruel? Is there any welfare advantage to the patient? Is the prolonged anesthesia that much more dangerous? ...

mmglobal · #23 (**permalink**) 06-17-2009, 10:20 PM

Not relative to kc's surgery.... just in general. Some surgeries are a big snooze with the surgeon standing for hours doing the work of a carpenter... craftsman... artist. Some surgeries are less of a snooze with discussion about blood loss, blood pressure, muscle tension, difficulties in the approach, etc... After 6+ hours of surgery that's a snooze, taking the better part of an hour to reposition the patient and set up for the second surgery that might take 2, 3, 4, 5 hours might be the best way to proceed. If other factors up the risk level, postponing the 2nd surgery until the patient is in a better position to withstand the surgery may be more appropriate. Obviously, each case is unique. This may not be the call of the surgeon... the anesthesiologist might have the go/no-go button here.

Again... this is not about kc... this is a generic answer to a generic question.

mmglobal · #24 (**permalink**) 06-17-2009, 10:24 PM

I just spoke to KC... I'm still wiping away the tears. She's 5 days post-op now and it's till way too early to tell anything about long-term outlook. However, she's walking more now without walker, without crutches, without wheelchair; than she has in 'forever'. The symptoms that, preop, would have made her unable to do a lap around the nurses station on crutches are no longer present. Obviously, she's still highly medicated and still in a lot of pain, but things sound great so far. Please keep your thoughts and prayers coming... they are working.

Mark

Michelle Maree · #25 (**permalink**) 06-19-2009, 08:22 AM

Fantastic Mark, she is one tough cookie!
Tell her we are with her all the way.
Michelle.

Maria · #26 (**permalink**) 06-20-2009, 08:50 AM

Mark,
thanks for updates on kc and here's hoping she'll be progressing on an even keel until next surgery and have some decent pain relief in between as well.

My thoughts and prayers are w/her for all to go as well as able and better~

jessmith07 · #27 (**permalink**) 06-21-2009, 05:00 PM

I've been thinking of her all week, even though I couldn't get on and check on her (been a bad week for me, personally, not pain-wise).

Thank you SO much, Mark, for keeping us updated...when is her next surgery? And what will they be doing?

kc0iet · #28 (**permalink**) 06-22-2009, 02:42 PM

Hi all, I don't understand what has happeded to my posts>>

I posted when I was able to in the ICU and I know what happened. I WAS doing SOOOOOOOOOO fantastic for about five days and then my world came crashing down

Dopler and Contrast CT have confirmed that I have blood clots in my Left Iliac Vein!!!!!!!!!!!!!!!

It hurts so bad - for those of you that have never experienced it, I could not begin to explain. For those of you that have, I am certain it is something you do not wish to remembr!

The posterior hardware removal and re-fusion if L4-S1, combined with
the removal of the SCS Stimulator - the final part of this monster surgery is just hours away mow. It's supposed to start at 11am.

THEN after I have been released back to general medical care?????? they will begin the Heparin and Coumidin to dissolve these blood clots and allow me to begin my recovery process, again.

It is almost 7am and I am ready to go. Hopefully this message actually posts!

PLEASE keep those prayers coming. I just got my temp back down from last night's 102 but all agree it is because of the leg,

dshobbies · #29 (**permalink**) 06-22-2009, 05:36 PM

Kc,

If you read this before your next surgery, my thoughts are completely with you. You've been through a lot and this is the last leg. Though a difficult journey, we all have huge hopes for you.

The blood clot was something you didn't need but perhaps it will resolve within the next couple of days and by the time your post op pain in managable, the clot will be gone too.

The future just keeps looking brighter. I'm looking forward to posts, telling us how great the world is treating you. good luck this afternoon. We are all holding your hands.

Dale

mmglobal · #30 (**permalink**) 06-23-2009, 12:48 AM

I just got back to the office after kc's posterior surgery. All went well... the final configuration with the 2 ALIF cages and the new pedicle screw system at 2 levels replacing the 1-level system looks great. There is much to discuss, but it will have to wait for kc to get back to us.

All the best,

Mark

treefrog · #31 (**permalink**) 06-23-2009, 03:42 AM

Thanks for the update Mark. I'm glad the surgery went well KC, and I hope the clots dissolve without incident, and you are back on the road to recovery soon. I really hope that your pain is on the way out.

jessmith07 · #32 (**permalink**) 07-10-2009, 02:46 PM

Has anybody heard about KC?

mmglobal · #33 (**permalink**) 07-20-2009, 03:53 AM

I spoke to KC yesterday. She's back home now and will have to wait to see how things turn out. Structurally, her back seems pretty good, but with the vascular complications she still can't get up and about enough to know how her back is because her leg swells due to the DVT's.

She reports some improvement as time wears on, but it's slow. So keep those thoughts and prayers coming as KC still needs them. It's been an amazingly difficult ordeal for her. Hopefully, life with the sequelae from the DVT's will be better than her life in a wheelchair since her revision surgery in 2006. Time will tell.

She'll have to fill in the details as she can.

Mark

Maria · #34 (**permalink**) 07-21-2009, 12:21 AM

KC,
I'm sorry I didn't make it to SD while you were there. I was caring for a friend who very nearly died and took about 6 weeks to recovery mentally/physically to be able to function well enough alone. I am very surprised I was able to function so well tho I must give credit where it's due and that would be to a really GREAT ESI given in mid May (bilateral transforaminal at L5S1).

Now I'm beat.. anyway, sure hope your spine will be recovering nicely and that the rest will fall into place after a while.

Thanks Mark for posting a bit for KC and hopefully when able KC can give us an update. No rush~ just take your time and let the body do it's work to recover.

Sending you healing thoughts KC~ Maria

kc0iet · #35 (**permalink**) 07-29-2009, 02:39 AM

Hi All!
Sorry I have not been able to keep you all posted! I am doing my level best to follow the doctors orders to the 'T'! My orders are "NO BENDING, LIFTING OR TWISTING - AT ALL!" and wear the most uncomfortable brace you have ever had any time you are out of bed! Do NOTHING more than walking for the first three months after surgery.

SO... my excuse is my laptop weighs almost 10 pounds (lifting) and to get it in bed with me would also require twisting, so I have only been online once, to pay bills, since I have been home. I am settig up (with my brace) at the desktop right now, but this is not going to last much longer!

Recovery is going VERY SLOWLY - and that is OK with me. I am doing better (most days), but still wearing a 100mg Fentnal patch. But I have cut down considerably on the Percacet (a couple of days, none at all!).

I developed sever blood clots due to the 7+ hour surgery to have the Chartie's removed. My GP says the leg with the blood clot will bother me the rest of my life and that I will likely be on coumidan forever too.

As of today, I have walked one half mile or more; twice daily, for the past six days! That is walking - unassisted by anyone or anything!
I have decided to give myself one more week of bed rest and I will then begin increasing my time up and in my brace. Hopefully I will be able to give you all more regular updates then.

Thank you to all of you for your prayers, messages, and calls. An extra special thanks to Mark and Wendy for their assistance while I was a temporary resident in California.

fuzzy · #36 (**permalink**) 07-29-2009, 04:00 AM

I am so glad to read that you made it through this incredible ordeal and are doing so well.

Walking is the best thing there is for you. Great strategy that will accomplish a lot. I know its really hard to not bend and twist and even this computer stuff can be hard. No rush but I am looking forward to a future update to your incredible story. I wish you the best healing up really well so you can but the pain behind you for good. I also feel you have a real chance your leg will heal fine as well. Especially if your activity level goes up due to less pain.

dshobbies · #37 (**permalink**) 07-29-2009, 06:42 PM

K,

Far more often than not, following your doctor's instructions are the best thing you can do for yourself, regardless of the imposition they pose. Good for you.

I'm sorry your leg is a problem but you're walking and walking. Trust me, this is good medicine. We all look forward to more updates.

Keep it up, Dale