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Joy
14th September 2004, 03:04 AM
Good Luck to Kim and Sinead at their appointments this week. I have a feeling a missed someone - Jonny? Sorry! But let us know how they go, you two!!

Amazed Jean
14th September 2004, 06:40 AM
Good Luck from Me too!

titch
14th September 2004, 09:41 AM
I think Jonny either had his checkup yesterday, or it is today - hopefully he'll be able to get online again soon and let us know. Good luck to all 3! :squeeze:

DublinPauline
14th September 2004, 10:41 AM
Good luck Sinead and Kim. :niceone: :niceone: and Jonny :niceone:

tonibunny
14th September 2004, 10:46 AM
Good luck to all of you! Sins and Kimberley, I can appreciate you must be feeling quite daunted at the prospect of your appointments.....keep smiling, we're all thinking of you xxx

Little~shedevil~dee
14th September 2004, 02:58 PM
good luck jonny , kim and sins :squeeze:

jfkimberly
14th September 2004, 03:44 PM
I'm leaving now. Everybody I said I wasn't nervous to... I am now! Thanks for the luck. I'll let you know how it goes as soon as I get home.

sins
14th September 2004, 04:22 PM
I was sick to the pit of my stomach last night but I'm fine today.I found out where the consultant's rooms are this morning and now I'm ok about tomorrow.Kimberly, I can't wait to hear how it goes...... :bear:

Kaja
14th September 2004, 05:20 PM
Good luck!

Jonny said something about missing the appointment :-( I guess he'll fill us in soon.

jfkimberly
14th September 2004, 08:41 PM
Ugh. I'd say more, but I'm sensitive to the fact that younger people read this forum. The short answer is it was not a successful appointment.

Dr. Saer did not just say "no" to surgery... he said, "hell no!" (essentially). He held on to my xrays to discuss it with his partner (Dr. McCarthy, who I was originally supposed to see, but who was not taking any new adult patients at the time of my referral). But at this point, I have so little faith in this medical practice that if they came back and said they could operate, I would say "hell no!" I'm trying to reach Melody with Tricare to see how I go about getting an appointment out of state. Dr. Saer mentioned Minnesota (that'd be your clinic, amazed!) and St. Louis. I'm not sure what my insurance will cover up there. But there's Dr. LaGrone in Texas. *growls*

So here's the issue: the only part that he thinks would be worth fixing is the part that was fused nearly 30 years ago, and because it's an old fusion he won't go near it. He doesn't seem at all concerned with the rotation and compensatory lordosis below the fusion (though he did acknowledge that my self-diagnosis is correct)... My hypothesis is that if someone could fix the rotation and lordosis, I would see dramatic cosmetic improvement, I would have less difficulty supporting myself (standing up), and I really think it would improve my pulmonary function... not to mention the fact that I'd have less pressure on my stomach, so I could eat more. So now I'm waiting for Melody to call me back to see if I can go to Texas or Minnesota.

*pout* I'd be lying if I said I am not disappointed. I was at least expecting him to say, "While I can't do what you're asking, I can refer you to [name of expert] to see what they can do for you." Instead, he was appalled at the idea of revision, and said several times that it's "too risky."

I don't remember exactly what he said, but he somehow gave me the impression that there is some threshold I have to reach before anybody would likely attempt revision... Since I'm not "bad enough" yet, then it's not worth the risk. My response to that is, if something can be done when I get worse than now, why not stabilize me now so I don't get worse? It's all so stupid.

<end of angry rant>

Jonny
14th September 2004, 09:00 PM
That's such a shame Kimberly - can imagine it would have been a let-down. Wish you all the luck with sorting out an appointment elsewhere, and keep your chin up until then.

Kaja's right - the appointment I was working up to for two months I missed because of the bloody trains. Have rescheduled for the 27th. I am unspeakably frustrated and upset that I missed it though.

jfkimberly
14th September 2004, 09:03 PM
We'll commiserate together, Jonny. But at least you only have to wait 2 weeks. Was it just a post-op checkup?

Jonny
14th September 2004, 09:14 PM
Yeah, my first trip back since surgery. Was not only hoping to review brace-wearing, and ask questions about pain, lumps and bumps, but was also going to get pictures of my post-op x-rays which no-one but me's seen. I haven't even seen them since before I came off morphine, so my memory of the spectacular spine-ladder is hazy at best! I would love a copy of them, and I have to wait another two weeks now. Jenn knows how I feel!

sins
14th September 2004, 09:15 PM
Sorry Kimberly, :squeeze:
I know you must be devastated after that appointment.
Revision surgery is a very specialised field especially in the USA and there are only a handful of really expert ones.I believe it's all for the best that that doctor was not in favour of taking down your old fusion.
Even if they were in favour of doing the surgery anyone would tell you that it's essential to get a second and even a third opinion.
I've said to others that if it is true that nothing can be done then you'll only be satisfied when you hear it from the best!!Onward to Texas I think!!!
Sins

jfkimberly
14th September 2004, 09:26 PM
Speaking of Jenn, I just saw her pre- and post-op images in the gallery the other night, and I desperately want to talk to her. Someone send her my way if you see her, would you?

Jonny, I can imagine your disappointment. You must be so eager to see how it looks again. I think I'd be beside myself with anticipation (this isn't helping, is it?). Please leave an extra hour early next time.

Sins, I'm trying to stay positive right now. I had serious doubts about this doctor's expertise prior to the appointment, and while I hoped, I really didn't think my quest would end with him. But I also didn't expect him to be so negative. It's one thing to know that he doesn't feel comfortable doing the surgery, but it's something else entirely to hit a human brick wall. I can't believe I have to call my insurance and arrange for this referral myself! He should be doing this for me.

Jonny
14th September 2004, 09:41 PM
Kimberly you absolutely HAVE to stay positive. It's what keeps us above water when things get bad, when we have setbacks, when we're miserable, when we're curved. We have to think of how things can get better.

Unfortunately we have to sort some things out ourselves, when we fall through the net. Don't let it bother you, just steam through and keep your eye on that sack of gold.

(By the way even if I'd have left two hours earlier than I did I would barely have arrived on time, and on top of that the train decided to stop halfway and throw us all off anyway...)

jfkimberly
14th September 2004, 09:58 PM
As bizarre as it sounds, I'm now back at square one and happier than I was a few minutes ago. I've just scheduled an appointment with my Primary Care Manager for a week from today at 2:30. I'll tell him exactly who I want to see, and he should be able to get me to that office. Oh, and I just read something in my insurance handbook about assistance with travel expenses if I have to go more than 100 miles to get to an appointment... this could be quite economical. *goes off to read more*

<feeling better>

Blair
14th September 2004, 11:08 PM
EEK! such a rollercoaster ride Kim! Sorry your appointment didn't go well at all, but I'm happy that you may have a solution!
*Hugs*

Amazed Jean
15th September 2004, 12:02 AM
Kimberly,
Sorry your appt.was a bust but maybe not. Maybe it makes one less step in the way to the right solution. This is very weird but last night while I was so bummed out after finally looking up close and personal at all my xrays, I did a rash thing. (I'm prone to them.) I called a man I went to college with eons ago. We actually stood up in his wedding many many years ago when he married the only other person I have ever known that had scoliosis. Deborah had many surgeries etc. and had many complications in the last several years. We had fallen out of contact with them as they moved away and we moved further away. At any rate another friend had called a few months ago to tell me Deb had died. Mind you she was exactly my age -so my world was rocked. I did know that she had some bad work done early on in her teens and then she also came down with MS to add in the mix and God love her everything that could go wrong did go wrong and she was back living with her Mom and sister so someone would be with her full time. Her husband commuted almost 150 miles every weekend to spend time with her. He is a teacher and didn't want to give up the insurance that he had for her. At any rate she deterioated rapidly one evening and the called Mike in time to get to her bedside but the MS complications just got to her breathing.
Any way back to my call last night one of the things the friend in the middle had said that as an adult Deb & Mike had gone to Minnesota in 1986 to some wonderful Ortho guy who was a giant help and he had redone a portion of her lower spine that was crippling Deb. Since I am scheduled to a clinic in Minnesota next week I just wanted to know if it was the same clinic. Ok I knew it was years ago. OK the clinic they went to has changed, but get this I am scheduled with the same Doctor. His Name is John Lonstein. Mike couldn't say enough good things about him. I'm hoping that this is a good omen for me. After next Tuesday I'll hope I can give you a good omen phone call of your very own. I am still terrified. So hold a good thought for me and maybe one for you in the long run.

jfkimberly
15th September 2004, 12:22 AM
Jean, I'm so sorry to hear about Deborah. With all that you had in common, even though you haven't been in touch lately the news must have hit you hard when you learned that she had passed away. But it is wonderful to learn that you'll be consulting the same surgeon who did such a good job on her back. I'll be thinking good thoughts for you... and me. *smile*

lindzi_11
15th September 2004, 02:52 AM
GOOD LUCK GIRLZ!!! :niceone: :niceone: :niceone:

titch
15th September 2004, 11:10 AM
I've not heard a lot about Lonstein, but what I have has all been good, so fingers crossed! :niceone:

Kim - fingers crossed for you too, for the next step of the journey :squeeze:

sins
15th September 2004, 12:27 PM
I had my appointment at 9.40 this morning.I was quite pleased with the consultant and he actually seemed interested in my situation and talked through a number of options with me.
The curve as I imagined has travelled possibly as much as 20 degrees since my surgery in 1983.It was quite difficult to measure the angle as it was so severe.That puts it somewhere between 120/130 degrees allowing for margin of error.The curve will possibly move at 1 degree per year for the rest of my life.
He would expect it would cause discomfort as opposed to severe pain, as I have good lumbar motion and a number of unfused vertebrae.It's done as much damage as it's likely to do to my lung function and is unlikely to have further impact in that respect.From a cosmetic point of view things will disimprove over the years.
We addressed a number of issues.
Costoplasty/Thoracoplasty:
Unlikely to have any major impact cosmetically and the procedure would not make any significant change to my body shape.
We could do nothing and live with things.
We could surgically intervene and do one of three things.
(1) Simply shore up the old fusion with extra bone graft.This would probably halt progression with a low risk of neurological injury.
(2) Continue the fusion downwards with rods and screws and "tinker" with the lower end of the fusion.This should stabilise things with a low risk of neurological damage apart from the positioning of screws/blood loss infection.
(3) Break the old fusion in two places and to attempt to realign the vertebrae in a better position.I could not expect very much correction due to the severity of the curve and previous fusion.This carries a significant risk of paralysis, infection and blood loss.
I would need to be thinking of doing this over the next few years before i get too old!!
Revision surgery can be done by Frank Dowling in Dublin or it can be arranged overseas if preferred."There are a number of surgeons internationally who do nothing else".
I'm not going to make a decision about this anytime soon.I was told if i wait to undergo surgery based on pain levels I'd be waiting forever as I'm unlikely to suffer major pain as a result of my fusion only going to L1. It's purely a cosmetic issue.
I'm going back in a year and we'll arrange a set of standing xrays and discuss things further.
Sins

mark
15th September 2004, 12:48 PM
Such a positive consultation Sins i hope you make the right decision. It seems like its going to a big decision as it could affect the rest of your life.

Glad to see consultants are taking us oldies seriously for a change. well lets say over 30s, ish, almost, better stop digging that hole for myself

Anyways good luck with what ever decision you make

Mark

Liv
15th September 2004, 01:11 PM
It's great that you talked to a consultant who really cares about your situation. I think that if you don't have big cosmetical problems with it that you can wait a few years to take a final decision (before you get problems of getting old, like osteoporosis). Take your time to explore every option. *hugs*

Amazed Jean
15th September 2004, 01:35 PM
Sins it really sounds like your doctor took some time to lay things out for you. You are right to take some time and let your head get around all your options.Good Luck and I'll say an extra prayer for you to make the right decision.

DublinPauline
15th September 2004, 02:36 PM
Sins, sounds like a good appointment and a thoughtful, constructive consultant. It is worrying that he would expect ongoing deterioration without intervention but good that he could come up with some lower risk ways of addressing this. Whew, that's that one over with!

BarmyArmy
15th September 2004, 02:55 PM
Wow what a good appointment Sins :niceone:


Belated hugs to Kim and Jonny for their appointment woes :squeeze:

DublinPauline
15th September 2004, 03:31 PM
Kimberley
Just realised that you already posted about your appointment. I'm sorry that that practice was so unhelpful, good luck in Texas!

jfkimberly
15th September 2004, 06:01 PM
I just got home from an eye exam, where I had my pupils dilated for the first time in my life. I learned something today: You can't see near objects after they dilate your pupils. So I had to copy Sins' post into Word and make it about 20pt font. I'll reply to anybody else later... I just really wanted to hear how her appointment went.

Sins! I love your consultant! He actually talked about your options with you, and explained the benefits and risks! I think it's wise to take some time to think about what you've learned today and take your time about choosing a course of action.

As for your progression, 20 degrees in 20 years doesn't sound too bad (unless, of course, you were like me and naively believed that since you were an adult, you could expect a stable spine). While he doesn't expect your pulmonary function to get any worse, is there any chance that they could make it better by breaking down your fusion and straightening things out a bit?

Congratulations on such an informative appointment! Take your time and think things through, then do what feels right for you.

jfkimberly
15th September 2004, 06:06 PM
Ah, my vision is clearing... Thanks, Titch, Pauline, and Leona, for the good wishes. I'm feeling more optimistic today. It was a Horrible Encounter with Dr. Saer yesterday (put that name on the list of bad ones), but I've had time to put things into perspective. I've just got to find a proper revision surgeon.

sins
15th September 2004, 07:15 PM
Thanks Kimberly,
I just fell asleep on the couch for the last 2 hours leaving my internet connection.Apologies to all who started Msn convos and received no response! :oops:
I pretty much think I've made my decision.I just look at the two little people in my life and know that my responsibility to them is way more than my desire to have a straighter spine. If I were free and single I wouldn't hesitate to have the surgery.I couldn't take the significant risk of something going wrong.My pulmonary function of 50-52% isn't a major problem and if I find next week that the arterial blood gases are normal then that rules lung function out as a reason for surgery.
I think you need to be firmly committed to revision surgery, to want it so much or to be in severe enough pain to gamble on the outcome.
I function at a very high level and I'd be afraid that the surgery would leave me worse off than better.I may change my mind in a year but I don't think so.
Kimberly, I hope you're feeling more positive about your own experience.
It's like my consultant said there are some doctors who do nothing but revision surgery.These are the guys you need to be seeing so you'd be wasting your time with anyone else.Get your contact in your insurance company to source a revision surgeon for you.I still think Texas is a good idea.can I suggest you check out the Revision group called salvaged sisters of scoliosis.It's on delphi forums and I'm sure they'll help you source a surgeon.Titch knows those ladies very well and they'd do their best for you.These are a group of people who have suffered greatly following failed scoliosis surgery.
Sins

jfkimberly
15th September 2004, 07:35 PM
Thank you Sins. I'll invite their input on who to ask for a referral to. I've got 'til Tuesday to make up my mind.

Joy
16th September 2004, 12:22 AM
Sins - I'm glad you had such a good appointment and seem to be feeling so positive about your back!

Kim - I'm glad you're feeling better.

Marti
16th September 2004, 03:00 AM
I'm glad your appointment was so good Sins. From your last reply i'm a bit confused though. Are you saying you're not having any surgery, not even option one? Or are you just saying you're not going to try for correction?

Kim- I'm glad you're feeling more positive. Good luck with whatever step comes next!

Kayla
16th September 2004, 05:49 AM
sorry I am late but I am glad your appt went so well!

sins
16th September 2004, 12:16 PM
Hi Marti,
Yeah, I meant no surgery at all.I'm not being opened up and subjected to a procedure that will neither correct my spine or offer any cosmetic improvement.Nor am I willing to risk permanent damage from an attempted correction.Salvage surgery is very different from first time surgery in terms of risk.When a correction is attempted in a first time scoliosis surgery the spine is flexible and can be manoeuvred to some degree but with an already fused spine it means breaking apart the old fusion (the consultant phrased it as breaking your back in two or more places)and running the risk of paralysis which is many times higher than a first time surgery.Also there is only a small amount of correction obtainable so the possible gain is small when compared to the risk of what can go wrong.
Sins

M.Magudulela
16th September 2004, 01:14 PM
Kim, I'm sorry your appointment did'nt go so well and good luck on getting a referal.

Sins- good to hear your appointment went well. I see you've answered the question I had in my mind about the differences in salvaged and first time surgery(concerning paralysis). I also need to make a decision about having surgery that is if my lung capacity can be increased and I am very scared. My most worry is paralysis, but I'm going to discuss this with my surgeon when all the other problems are sorted out.

Thank you, Kim, Sins and everyone for sharing your experiences. I really appreciate this and I sure learning a lot from you all.

Maria

sins
16th September 2004, 01:43 PM
Thanks Maria,
How is your lung function now and is the physiotherapy having any effect yet?
Sins

M.Magudulela
16th September 2004, 03:01 PM
I can not really tell now if the physiotherapy is having effect, I still get headaches in the morning and the tiredness oh! it is terrible. On Monday I could not go to work because of this. I am going for another lung function test on 8/10/04 and I will mention this to the lung specialist.

Thanks for asking Sins.

Maria

Amazed Jean
16th September 2004, 05:17 PM
Maria,
Please tell your doctor about the headaches in the morning. That was the first thing I noticed when I went on O2. I seldom wake up with a headache. I used to wake up most days with a killer headache that was sorta behind my eyes. I'd go around all day feeling exhausted and I felt like I had to hold my eye in place. I still do occaissionally but two of three times I had the headache in theAM I also had knocked the O2 off during the night.

M.Magudulela
16th September 2004, 05:30 PM
Amazed

Thank you I will do so.
Btw what is an O2 is it somekind of a breathing machine???
Sorry I don't know if you have discussed this on other forums, and I have missed it.

Maria

Amazed Jean
16th September 2004, 07:14 PM
O2 is oxygen. I have a machine that is called an oxygen concentrater that removes oxygen from regular room and concentrates it. The oxygen passes through a "bubbler" to humidify it and then there is a 50 foot long clear tubing that delivers oxygen to a nasal cannula that I wear. I also sleep with it on and when I go out of the house I have a small (10") metal canister that is filled with Oxygen that keeps me supplied. Its in what they call a fanny pack or you can wear it like a shoulder bag. All in all its a pain in the butt to be tethered to something but it beats being in the hospital.

Marti
16th September 2004, 08:17 PM
sins-thanks for answering my question. that makes a lot of sense. I'm glad your decision came so easily. it definitely sounds like it's the right thing for you :-)

jfkimberly
16th September 2004, 09:07 PM
Hmm. I think I'm going to ask Dr. Goza about switching from BiPAP to just O2. I haven't had a good night's sleep since I got the machine. :/

I'll finish this on the nocturnal hypoventilation thread. Maria and amazed, will you please follow me there...?

jfkimberly
22nd September 2004, 04:41 AM
I went to my primary care manager today for my appointment, and it was much more successful than my appointment last week. My doctor asked what I was in for, and I briefly explained that we had exhausted the central Arkansas region, and I have not found an orthopaedist who is specialized enough. I told him that Dr. Blankenship referred me to Dr. Saer, who in turn said he wouldn't go near my old fusion, and that there are only a handful of surgeons in the country who would consider what I was asking for. So my primary care doctor asked what I wanted to do. I explained that Dr. Saer had mentioned a place in Minnesota, but I knew of a doctor who was closer who does revision... (I didn't lie about anything, but I might have made it sound like Dr. Saer was more on board with the idea than he really was.)

Then came the tricky "will Tricare cover it?" part... We ended up with a woman from the Tricare office (which is right there in the clinic, because it's the military insurance and clinic) in the consultation room going over the plan of attack with us. We decided to try the military medical facilities first, so we're checking to see if Wilford Hall Medical Center in San Antonio, Texas, has anybody who does revision (I'm sure they don't), or if there are any orthos in the network down there that they know of. When we get a no from them, then my doctor and the Tricare woman who was working with us today will go to the Medical Director and tell him we've explored every option within the network, so we need to get non-network approved. And then I'll be able to go to Dr. LaGrone in Texas.

I have no idea what kind of time frame I'm looking at, but I'm still making progress--and I've got a very supportive doctor and insurance representative on my side. *satisfied smile*

Joy
22nd September 2004, 04:51 AM
Good

sins
22nd September 2004, 11:57 AM
That's wonderful Kimberly.You'll be getting one of the most qualified and expert opinions available anywhere.If he can't do your surgery noone will!!
Sins

Blair
22nd September 2004, 01:59 PM
:jump: :party: That is fantastic!

Marti
23rd September 2004, 01:50 AM
that's terrific!

DublinPauline
23rd September 2004, 11:26 AM
Aw, that's great news Kimberly. I hope this route has a more positive outcome for you. :-)

ivanleg
23rd September 2004, 04:49 PM
Good result Kimberly. :niceone: Who knows perhaps Dr. LaGrone is handsome and single as well as a crack surgeon in his field, then you'll be laughing all the way to the operating theatre. Perhaps. Depending on what transpires with the review of your case etc.