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CHRIS WBS
01-16-2007, 08:59 AM
I had my sixth consultation with a surgeon yesterday. This surgeon is a veteran in his field and has been performing adult scoliosis surgeries for many years. He allotted me two hours of his time and was brutally frank. The bad news is I will require extensive surgery and I am high-risk. The good news is that I have finally gotten two consenting opinions. This surgeon recommends fusion of my entire spine in three operations. He also pointed out to me that because of the size and location of my curve, I am at a much higher risk for paralysis. He specifically referred to one of my MRI images and my most recent x-ray and explained to me what’s happening to some of my vertebrae. When I asked him what I could expect in the future if I don’t have this surgery, well I’ll just say it ain’t pretty. Interestingly, he mentioned that surgeons are seeing more and more patients like myself…aging baby-boomer females with untreated scoliosis who are presenting with pain and progressive deformities following menopause.

As an aside, for those of you who have had surgery or are contemplating surgery with Dr. Keith Bridwell in St. Louis, this Chicago doc voluntarily told me that Bridwell is “outstanding.”

Chris

Singer
01-16-2007, 09:31 AM
Chris,
I know that most statistics say there is a one in 500 chance of paralysis with this surgery, but it really does SEEM to be a very rare complication these days. If I were you, that would not be my worry. My worry would be, if you don't have this surgery SOON, you only increase the chances of your curve progressing and surgery and recovery being that much more difficult.

There are people on this board with worse curves than yours who have done fine. The odds are in your favor that you will do fine.

Have you talked to Bridwell yet? I can't remember. If I can stick my neck out with another piece of advice, I would STOP getting consultations and pick the guy you had the best gut feeling about. I think all the people you've seen are more than capable of handling your case. Personally, I wouldn't feel comfortable choosing the guy you just saw, who obviously did NOT instill confidence. You want somebody who's not intimidated by your curve!

All the best,
Chris

CHRIS WBS
01-16-2007, 10:12 AM
Chris,

This is my life I'm talking about. Considering the magnitude of this surgery, I will get as many consultations as I deem necessary. And for those of us who are older, my best advice is to not stop at just one or two opinions. The surgeon I saw yesterday, believe it or not, is the one I felt most comfortable with and I did appreciate his candor. He spoke about a recent patient of his who, in spite of his best efforts and his superior surgical team, did suffer permanent paralysis. He also told me that of all the surgeons I have seen, each has had patients who became paralyzed. The bottom line is that at my age the risk for serious complications goes up considerably. It's an unavoidable fact. And I'd rather a surgeon give me the hard truth instead of sugar-coating.

Yes, I did see Dr. Bridwell. My immediate impression when I walked into his office at 7:45 am and saw that it was already packed with patients was boy, this surgeon must be high in demand. And if I had a spouse or family member who would accompany me to St. Louis for surgey, I would probably select him, but I'm having a hard enough time to get my family to support me locally.

Chris

patika48
01-16-2007, 10:16 AM
I am in Denver and after 40 years of progressive but pain free worsening I am now at about 75% curve between L4 and T4. I am 58, female and single and facing this on my own is daunting, if not overwhelming. I don't know how to prepare for the whole thing. I am scheduled for April 23. I would really like to hear from other age peers who have gone through this to learn how to prepare (physically, mentally, spiritually, emotionally!) and how the recovery went.

Singer
01-16-2007, 10:49 AM
Chris, I'm going to be 52 when I have this done -- not much younger than you. Point taken about the risks and the need for consultations.

I'll say it again: the odds are in our favor that we will be okay. I truly believe that, or I wouldn't even consider having such serious surgery.

lelc2002@yahoo
01-16-2007, 11:03 AM
Chriswbs---no chance you'd have Boachie take a look at you?? Bsprings went to him from Georgia.. & then she stayed at the rehab next to the hospital...Ly

patica--maybe my blog will help you. I'm post-op 5 mths and I feel very good now..Ly http://lynnebackattack.blogspot,com

CHRIS WBS
01-16-2007, 11:07 AM
TO: Patika 48

Hi. I know exactly how you feel. I will be 58 in May. I'm single and facing this alone as well. At best I have two siblings who think I'm facing the equivalency of an appendectomy and a sister who's a nurse who thinks I'm crazy to proceed with this. When I told her over a year ago that I'm looking into surgery, her response to me was, "Do you know how we treat people with metal in their spines?"

I'm surprised that you were even able to get a surgery date. I have no choice but to go to my appointments by myself, and I think surgeons have been reluctant to tell me the whole truth about this surgery because they see that I am alone. I had one surgeon tell me he does not want to see me again unless I am accompanied by a family member. Yesterday's experience was refreshing because I felt I was finally being told the whole truth about this surgery. I do believe the surgeon was expecting me to break down and cry. But I remained very stoic. He doesn't know how strong I am. When I asked him if women like me who are all alone just forego this surgery, he said, "you will have this surgery; you have to."

One way or another, we'll get through this.

Chris

Karen Ocker
01-16-2007, 02:10 PM
For all you ladies who are dealing with this in later middle age:

It does not go away by itself---and if progressing like mine did--assuming, as I did based on the average longevity in my family, I had 20+ years normal life expectancy ahead, I figured I wanted to have the best quality of life possible.
I also did not want to burden my dear husband with an increasingly debilitated spouse.

It is a lonely decision because, unless one lives with scoliosis, no one else has a clue. Family members may also be uninformed (yes, including nurses) and in denial.

As far as paralysis goes and other possible complications, the surgeon MUST tell you legally. Spinal cord monitoring is carried out to assure spinal nerve integrity is maintained throught the surgery. Fortunately, this complication is rare.
What helps is talking to patients operated on by the surgeon you choose.
I also did not waste my time on people who could not give me the support I needed.

Suzy
01-16-2007, 04:06 PM
Chris WBS,

I have followed your posts and held my breath as you go for consult after consult hoping this one will be the right Dr. for you. I can only say you need to go with the surgeon whom you most feel comfortable with as well as who instills your confidence in their ability to help you. As my Dr. put it "It's like a marriage" You will see your surgeon for years for check ups. I totally agree with Karen Ocker about the paralysis. The spinal cord monitoring is extensive. Did you see extreme surgeries with Dr. Boachie on it? The Dr. who was monitoring the spinal cord would tell Dr. Boachie when it was compromised and he would back off and work elsewhere or try a different approach. This is common practice during these surgeries. They have to cover themselves and warn us of all the possible complications. True at your age you might have one or two like Linda said back a few days or so ago. But I have seen you post in the past, after finding out about another possible complication, something like "that's it I'm not having this surgery". You will feel a sense of peace when you find the right Dr. and then begin to look forward to the rest of a much improved life. I also wish for you then, a positive attitude toward this whole thing. All the best, Suzy

dawney
01-16-2007, 05:56 PM
To the contrary of many consultations, I saw many doctors who couldn't help me. I found my surgeon on the internet and after two appointments scheduled surgery. I did feel co9mfortable with him. I found myself staring at his hands to make sure they were steady. Chris it was the best decision I ever made. It was a tough recovery, much tougher than I thought and I had a few minor complications. My surgeon also wanted a family member with me at the last appt before my surgery and I think it was to impress upon them how tough of a recovery it was going yo be. Once I made up my mind that I couldn't live with the pain or the deformity the decision was pretty clear. I hope you make the right decision for yourself and keep a positive outlook. Honestly I was at peace with my decision the day of my surgery even though I thought I was going to be a basket case. Sorry for rambling.

Kkong
01-16-2007, 09:10 PM
I am in Denver and after 40 years of progressive but pain free worsening I am now at about 75% curve between L4 and T4. I am 58, female and single and facing this on my own is daunting, if not overwhelming. I don't know how to prepare for the whole thing. I am scheduled for April 23. I would really like to hear from other age peers who have gone through this to learn how to prepare (physically, mentally, spiritually, emotionally!) and how the recovery went.

I am 49 and undergoing surgery February 21st of this year. I am having it done by Dr. Munish Gupta at UC Davis Medical Center in Sacramento, CA. I saw three surgeons, and he was the one who was the most confident and said no problem, and I have requested no blood transfusion products, so it will be a three stage surgery.

I used to be so anxious about the surgery I started vomiting several times a day for two months, but now that is getting better. I just want to get it over with. I do Pilates every day and weightbearing leg lifts to increase the strength in my legs, which is what you will be using a lot of during recovery. I take relaxing baths and just X off each day on the calendar. Eat nutritious meals and take a multivitamin.

Take care.

KKong

macky
01-17-2007, 12:01 AM
I just want to wish you Chris WBS all the very best. I am so glad I had my operation when I did.

A huge decision for you I know, Chris there have been so many successful stories here on this forum and some of them have answered your post.

I think your best line was" I remained very stoic, he doesnt know how strong I am" Atta girl, good attitude.

Thinking of you,


God bless,
Macky

tommyo
01-18-2007, 06:56 AM
Chris,

Which surgeon, if you don't mind my asking?

Tom

Shari
01-20-2007, 11:44 PM
Hi Chris W,

Our situations are all very difficult for various reasons. It's a tough decision to make one way or the other, and to not have a support system around you makes me sad.

You've already been given some good advice. But something you said struck me and I just have to ask you about it. You mentioned what your sister said about, "how we treat people with metal in their spines".

Did she tell you how they actually do treat people like us???

Shari

JanM
01-22-2007, 01:58 AM
Hi Chris,

I had the same question Shari just asked. What did your sister mean? How do they treat people with metal in their spine?

CHRIS WBS
01-22-2007, 09:27 AM
She said she sees all too often a vicious cycle of over-prescribed opiates and then the need for detox.

Chris

lelc2002@yahoo
01-22-2007, 09:52 AM
Having gone thru this surgery, I don't feel that's the norm at all...just my opinion--Ly

Cakedec
01-22-2007, 09:02 PM
I don't either; I really had to complain just to get enough for pain control. Then they encourage you to cut down and go off it once you can.

Deb

Kari
01-22-2007, 09:15 PM
Hey Chris,

Glad to hear from you! I have been thinking about you, since I have been experiencing the same surgeon experience here in Milwaukee. I have seen 6+ surgeons. The only difference is that the younger the docotor the more they want to fuse T-4 - L-3). The older docotors want to fuse less (T-6-L-1).

I am struggling with the decision because I like to different surgeons one older and one younger. I keep thinking the less that is fused the better I will be. Any thoughts?

P.S. It was recommended that I visit with both docotors you have seen. Just think it would be too hard on my family to go out of state. :eek:

57 degree thorasic curve

dawney
01-22-2007, 10:34 PM
I am not on any narcotics at this point except for an occasional tylenol with codeine. I had no withdrawal symptoms. In fact I worked for 7 and a half hours today and haven't even taken a tylenol. The temptation would be there but if you have a responsible dr they should make sure you are weaned off properly.

macky
01-22-2007, 11:59 PM
Dawney, that is just fantastic, working over 7 hours. Just seems like not long ago when I was reading all about your operation from your loving partner.
You have done so very well, congratulations.

I think that the amount of opiates one takes actually depends on the patient and the doctor. Weirdly, I am the one who refuses to take any more than I am already and my doctor who "says, ok, its no good telling you is it". He does not like to see me in pain but if I am coping, even though I am still in pain, it is not huge pain, I am happy to stay with the amount of meds I am on.

I was on 10 a day still in pain, so I thought no not going up any more, so I came down a quarter a week. It took a while but I got to a level where the pain is bearable and there I have stayed. Admittedly I have an extremely high pain tolerance level.

Macky

CHRIS WBS
01-23-2007, 01:06 PM
Hi Kari,

Is there a support group in the Milwaukee area? If so, you might be able to contact or even meet people who have had surgeries by some of the surgeons you have seen. And that might help sway you one way or the other. I've been put in touch with a number of people through the Chicago support group.

My situation is quite different from yours. I'm one of the "oldies" here, and the reality is that I will require a long fusion. My big curve is in my lumbar spine and I think that given my age, most surgeons will recommend a long fusion. When you're younger, it's much easier to have more surgery if your fusion needs to be extended.

I feel I may have to go out of state for surgery, and if so, to hell with my family. If I have to hire the cab driver to stay with me at the hospital, I just may do so. (LOL) When I told the last surgeon I saw that my family asked if there's any way I can have surgery in Madison because it would be more convenient for them, he said, "Convenient for who? You're the one who's having surgery."

Dawney: It sounds like you're doing quite well. How long is your fusion?

Macky: Through a co-worker I've been put in touch with a woman who had surgery years ago by the last surgeon I met with. She had Harrington Rods and developed problems (flat back, etc.). For the past five years she was undergoing pain management, but her pain just worsened. She found a revision specialist in Florida where she had revision surgery this past July at age 55. I hear she is doing beautifully, looks so much taller and is free of pain. Have you considered revision surgery?

Chris

abhbarry
01-23-2007, 02:00 PM
Hi Chris,

If you do consider surgery in Madison, I would see Dr. Tribus at the Spine Clinic. I have been quite impressed with him so far. He is a John Hopkins Fellow and studied with Dr. Bradford at UCSF, who I gather has a very good reputation (although he is retired now). Just wanted to give that info incase you are still considering Madison. I will be making my final decision about surgery with Dr. Tribus in March.

Good luck,
Anya

macky
01-23-2007, 05:11 PM
Hi Chris, that is so nice giving me that information. I have considered surgery but unfortunately there is no one who is qualified enough to do the revision surgery I need here, I dont think.

I have sent you a private message.

Macky xx

dawney
01-23-2007, 06:13 PM
I am fused from T-10 to the iliac. I don't think he went any higher. He was only suppose to go to the sacrum but decided to go to the iliac while he was there. I actually did not know that until last week when I was xrayed. I am sure I was told but I was probably stoned. I am more flexible then I thought I would be although I do get pretty stiff.