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Seriously am I the only one?

Butterflye18BButterflye18 Posts: 20
edited 06/11/2012 - 8:47 AM in Back Surgery and Neck Surgery
So I posted a question to see if anyone with a bleeding disorder has had a 4 level cervical laminoplasty and... nothing.. all kinds of viewings but no reply. Whattha? Am I the only one that has this issue? :OO

Okay does anyone at least know someone that has VWD(von willebrands disorder)and Had this surgery or back surgery or any spinal surgery? :< Or maybe direct me to a posting about this :(


  • Sorry Butterfly, I have had a Discetomy but I have no idea what disorder you are asking about. I hope you find an answer. Give it a little more time. I answered just to let you know people are out here but only answer to the issues that they are familiar with.
  • Thank you so much. It's a rare bleeding disorder so I guess not to many people know about it. Kind of a Factor VIII disorder blood does not clot right.It's Kinda Like Hemophelia A with some differences.
  • Maybe you can post again, but it title put the disorder, then if someone knows it, and been through it,t hey will respond.

    I ususlly only respond to titles I know I have something to say about, and other titles I jsut go by, not wanting to waist my time reading something I know nothing of,

    Good luck
  • Butterflye18,

    We had an employee when I was working that they discovered had/has a bleeding disorder. I never asked the 'direct' cause or name as it is a HIPAA issue. He had 3 shoulder surgeries for torn rotor cuff. He was also on medication to 'help' should he get into an accident.

    He donated his own blood before each procedure. So surgery is possible in a lot of cases, but not sure about spinal. I know for my neck, blood loss was minimal, but I have seen on here where some needed blood. I wish I could be of more help, can only go on what my former friend/employee had with his bleeding disorder. I hope you find answers.

    Have you spoken to your doctor about it, and the risks with surgery for you? From what my friend told me, he was extremely nervous with any procedure that skin was cut - including dental! Please let us know what you find out. Support *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I had back surgery almost 2 years ago and have a mild case of Von Willabrons. It never affected me. I didnt have to have any blood, and this was after a 8 hour 2 level PLIF . I have never had to have blood, but they said my disease was in the gray area. Couldnt say I did but couldnt say I didnt. I did have to have bleeding times done before surgeries.
  • Hi

    People with von Willebrand disease have bleeding problems because the levels or function of these blood components needed for clotting are abnormal.
    I don’t know what type of VWD do you have,but you and your doctor ,I believe, know it.
    The important, because you will get treatment before and at the time of the operation to avoid massive bleeding from operative wound.
    Your Surgeon must be very accurate to stop any oozing of blood in the wound.It is necessary to use drainage from the wound during 1-2 days after the operation.It is significant to avoid the appearance of haematoma under suture of skin and soft tissue.The big haematoma may will pressure on the spinal cord.
    But your surgeon and anesthesiolog have protocols what they must do for avoid complications.
    I assure, if you will get satisfactory explanation about your condition from your surgeon, you will feel more better .
    Good luck
  • I have the opposite. I have Lupus Anticoagulant, which shows up as slow clotting in tests, but actually is a hypercoagulative disorder. It is why I never got my collarbone fixed.

    And I'm currently undergoing testing to verify/unverify polycthemia (high red blood cells), which would be another complication.

    But sorry, no poor clotting here. I hope everything is going OK for you.
  • Call the Anesthesia Department. They will absolutely need/want to know ahead of time to determine a plan of care to decrease the incidence of bleeding, and what they would do should you have a bleeding issue. Be sure to speak with a practicioner not a secretary for them. Equally, call your surgeon to make him aware of the VW, and that you have had a discussion with the anesthesiologist.

    It will give you piece of mind going in for surgery.

    Take care,

  • Thanks Brenda. I ask about the donating bloodstuff but they said that it is such a lenghty procedure etc. but I talked to the Hematologist today and he said depending on my blood loss during surgey I can get another dose of DDAVP which is the drugs used to make my factor VIII work correctly.

    If I am okay and not alot of pain after surgery I will let you know. :)
  • Woow that sucks too. So can't they use blood thinners for you?
  • You are right. Appearantly I have had this condition all my life but they just discovered it. I always had nose bleedings for no reason all my life excessive bleedings. In '96 when I had a C-Section they actually did not want to do it because they said my blood isn't clotting right , but never explained why, in '05 when I had a Hysterectomy I nearly died because I had internal bleeding and the OBGYN surgeon had to go back the nxt day to fix vessels and Hematoma can you believe that :jawdrop: :< and guess what they gave me for pain? Freakin Naproxen!!! nice little deadly combination for me, because that is at least one of the Meds I cannot have, but they idn't know that ofcourse because nobody bothered to check why I was bleeding so outrageously. All this at Kaiser. So when I had to have Ovary removed in '09 I let that OBGYN surgeon know about the nice little episode with the Hysterectomy, so he orders a ptt and aptt and guess what? my bleeding time was wayyyyy out. So he sends me to the Hematologist and that is when they discover that I have VWD Go figure.

    But like I said to Brenda above depending on my bleeding during surgery I will need another dose of DDAVP they told me today.

    Thanks for you kind words and advise :)
  • I talked to them and the referred me to Hematologist , said that they have to order Meds for bleeding. It's all taken care off now.

    Thanks :)
  • My dad and sister have Von Willebrands. It is very rare. I believe it is the factor 5 clotting that is the cause.

    As to your question he has never had spine surgery but he has had several heart surgeries including a bypass, valves, pace maker implant, revision surgery. He has also had knee and hand surgery and I'm sure something else I am forgetting.

    The doctors have to be aware and the anesthesiologist as well. It is very possible to have a successful surgery.
  • Butterflye,

    I hear ya there. Glad to hear you were able to talk with the Hematologist, I am sure that helped ease things for you. I will keep positive thoughts heading your way at a very good surgery. :) Yes, please let us know how you're doing.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Factor VIII (eight) actually. Yes I hear only !% ofthe population has it. A lot of Doctor's have not even heard about it.I hope your Dad is okay now. Thanks for sharing. :)

    I mean 1% :)
  • You see Butterfly, you got some answers. I guess you did have to spread the wings a little though to get noticed. I am glad that others were able to help out some hopefully. Sometime the rare stuff does get lost in all the chronic stuff. I'm glad you spoke out and did not give up. I have learned so much from this site and all these good people. This place has been my life line more than once. Ya'll have a good one.
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