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CStadler
04-05-2008, 12:19 PM
I am now 2 weeks post osteotomy and thought I would share my story. I don't want to scare anyone with this but just let be aware not to take these surgeries lightly because you never know what can happen.
With my first surgery I lost a lot of blood despite being checked by a hematologist before hand. Because of the significant blood loss the first time I saw another hematologist before the osteotomy and he found nothing as well. This surgery nearly cost me my life! The surgeon told my husband despite giving me infusions for the unknown bleeding disorder I bled torrentially and that it could not be controlled surgically. He told him he really didn't think he was going to be able to pull me through. I lost 11 litres in the 6 hours.
He now is going to have my blood sent somewhere to the US to undergo further testing believeing that it must be a very, very rare missing factor in my blood. (missing factors are what causes heamophilia, Von Wilebrands disease).
As I said I don't want to alarm anyone but those thinking of having this surgery that don't have pain, I think should consider it very closely.

If anyone knows the best Bleeding disorder clinic or hospital in the US I would love to know where it is.
Thanks for listening....and by the way I have a perfect correction now and am thrilled.
Carol

ElleBelleCurvz
04-05-2008, 12:36 PM
Carol-Im afraid I can't help you but I hope that your okay, and I hope that nothing is wrong. My prayers are with you and here's hoping it gets better.And your right, despite maybe scaring a few people, there should be MORE stories like this. Not that I want them happening, but people SHOULD tell, there's nothing wrong with being paranoid.

Danielle

Susie*Bee
04-05-2008, 12:44 PM
Wow, Carol, that was close. So sorry to hear about it! But Danielle's right in saying it's good to share both the good and bad news on this forum. I think most of us get a pretty severe 'caveat' warning, pre-op, but there may be some who don't.

That's an awful lot of blood to lose. I imagine it takes a long time to build back your strength from that. With my surgery, even using the cell-saver blood, I needed 4 units-- which fortunately I had provided ahead of time. But that was just normal bleeding that was expected with my surgery.

Can't help you with the bleeding disorder clinic/hospital question, but good luck. And I'm thrilled for you too, with the correction! YAY!!!

sccrm08
04-05-2008, 01:42 PM
Carol,

I'm so glad to hear your doing better now. I had the cell saver and 3 units of blood with my surgery and I can't imagine loosing 11 units. I was only told to donate 2 units but in what I read I did not think that would be enough if I did need blood, so I asked the Dr. to get the paperwork for 2 family memberss to also donate 1 unit each and i'm glad I did as it was needed.

SandyC
04-05-2008, 02:21 PM
Carol,
Have you been checked for Hepititis? The liver produces a clotting factor, so it can influence how well your body stops the bleed. Hep C in particular has no symptoms and you can have it for years with out knowing it. I have Hep C, so when they did my A/P and then got MRSA followed by 4 more surgeries in 8 months I really lost the blood. I ended up getting just over 100 :eek: units of whole blood !

Hope you find out what's going on............
SandyC

Karen Ocker
04-05-2008, 03:30 PM
As I said I don't want to alarm anyone but those thinking of having this surgery that don't have pain, I think should consider it very closely.Cstatler

Carol:
Of the hundreds of persons here having surgery I do not remember anyone who had bleeding as bad as your case. If I remember correctly you had easy bleeding your whole life before the surgery. A person without these signs probably will not have a clotting problem.

Pain is not the only indication for correction. Progressing curves is a major one. .
Sooner or later pain will come.

I did not have excessive, uncontrollable pain but I had breathing issues-lost lung tissue and never really got back to a normal breathing because my curves were so large. Waiting for pain, or because of fear of surgery/complicatiions--despite progressive, large curves only increases the likelihood of more blood loss and complications.

Here is a US link which might help you on your search:

http://allaboutbleeding.com/

There are new tests being developed to find hidden problems not showing up with normal testing:

http://www.innovations-report.de/html/berichte/medizin_gesundheit/bericht-38210.html

loves to skate
04-05-2008, 09:52 PM
Dear Carol,
I worked for many years as a Medical Laboratory Technologist and we sent all of our bleeding disorder blood samples to the Mayo Clinic in Rochester, Minnesota. I would say that they are pretty much the gold standard for that type of blood work and many other types as well. If anyone thinks that they might have a bleeding disorder, or a family member has a bleeding disorder, make sure your surgeon orders a PT and an APTT test. If you are not on Coumadin or Heparin and either one or both of these tests are prolonged, then a mixing study test should be ordered. If the mixing study test is abnormal then you have either an inhibitor or a factor deficiency. Usually that is when blood samples are redrawn and sent off for further study. As many as 7 vials of blood need to be drawn. Many Doctors are unaware of these problems and don't even know what tests to order except for a Hematologist. Aspirin and all other NASAID's can also cause bleeding if taken up to 2 weeks before surgery. Did your Dr. transfuse you with fresh frozen plasma or any other plasma fractionations while you were bleeding? Usually while working in the blood bank, we would advise a Dr. to use fresh frozen plasma after 6 units of blood. This helps to replace factors that are getting diluted out.
I hope this helps and I'm so thankful you survived.

CStadler
04-06-2008, 11:28 AM
Thanks to all who replied....

Sandy C - our Canadian Blood Services screeens all blood when you donate even if it is for your own surgery and I had nothing in my blood prior to the first surgery.

Karen - 2 sites that I had not found yet, thanks!

Loves to skate - prior to the first surgery I was off of anything that might thin my blood for 2 months, even down to food and things like green tea. Both hematologist's sent me to the only hospital in the Vancouver and surrounding areas that does that extensive bleeding disorder testing. Both times all the work came back normal. I had 12 tubes taken each time and although I don't know what tests were done they assured my surgeon that every known test available in Canada for bleeding disorders was done. I do know that my surgeon had to fight with Canadian Blood Services prior to this second surgery as they were reluctant to release as much whole blood as he was asking for. I gave 3 units of my own however for some reason one was discarded during surgery. (I'm going to find out why). In Canada unfortunately they will not allow a relative to donate on your behalf, the program is just not available, which I think is a tragedy. I will look into the Mayo clinic's website and see if I can find anything that might help my surgeon figure this out.

The good thing is I can't believe how good I feel. So much less pain than the first time around and I only need 2 Tylenol #3 each day to control the pain.

Thanks again to all of you. Carol

loves to skate
04-06-2008, 01:13 PM
Hi Carol,
If a blood relative donates blood, that blood needs to be irradiated before it is transfused to prevent graft vs host disease. It is possible that they do not have a facility that does the irradiation procedure althought it is a very simple procedure. Maybe the Canadian insurance just won't pay for that extra procedure. Family members are not the best donors for other reasons such as antigen/antibody reactions. A woman can be sensitized during pregnancy and over time the antibody titre diminishes and may not be detectable. If that child or another family member with that antigen were to donate for you, it is possible to have a delayed transfusion reaction.

I was wondering if you might have a platelet function problem. Is that something your Doctors have looked into? Good luck.

It's wonderful that you are feeling so good. I'm at 4 months post-op and I'm feeling so good myself. God Bless the Doctors.
Sally
Sally

CStadler
04-06-2008, 03:44 PM
Hi Sally,

A platelet problem is exactly what they were thinking was the problem but again I had all the platelet aggregation testing available in Canada. After the first surgery and all the blood and plasma I was given they found me to have now aquired Antigens D & C which will make it harder to match if I ever require plasma again during a transfusion. Since it won't affect my health I suppose a small price to pay for a healtier back.

We need to find the root of this as my surgeon believes I should now wear a medical alert braclet in case I was ever in an accident as well as for the safety of what may be passed on genetically to my children.

Thanks for all your input. Carol

loves to skate
04-06-2008, 06:27 PM
Hi Carol,
Just to set your mind at ease, D neg,C neg blood is not that hard to come by, but the medic alert bracelet is a very good idea because it would hopefully give the blood bank a heads up to find compatible blood for you quickly in an emergency. Please keep me posted on how you make out because you are correct in needing to get to the bottom of this problem for yourself as well as for your children. Send me a private message if you want to when you get some answers.
Sally

CHRIS WBS
04-07-2008, 03:48 PM
Carol,

I think your guardian angel was working overtime. What a close call indeed, but Iím so happy for you that you pulled through and youíre going to be okay. Yes, the risks are high with this surgery, but so is the risk of doing nothing especially for someone like me with an 80ļ curve. With all the praying Iíve been doing these past three years, if something happens to me that costs me my life during surgery, then it is my time to go. Thatís how I look at it. No one who comes into this life is guaranteed a long life or a life thatís free from illness or disease. I take risks when I get on the freeway to drive to work every morning.

Wishing you a very speedy recovery.

Chris

JoAnn5
04-07-2008, 04:39 PM
Carol, Thank goodness that all worked out ok in the end, it was definitely a close call!! And i'm so glad that your correction is so good!

Chris, what a long way you've come!! When i saw the topic of this thread i thought of you and said to myself... 'oh i hope Chris doesn't see this and panic and decide against her surgery!' I think your praying has helped you tremendously to overcome the fear you used to have. God Bless you!

Hugs....JoAnn