Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Recovery After Donating Bone Marrow

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:29 AM in Matters of the Heart
Any ideas on how I can get back to pre Bone Marrow Donor

Since that day over a 17 months ago, I have experienced:

· Blood loss from my left side extraction point that stopped bleeding prior to discharge from the hospital

· Moderate to mild pain in my extraction points and pain & numbness in my left buttocks down my left leg and have gained a limp on my left leg.

· This procedure has left me with limited mobility

· Chronic pain

· Negative impact on physical relations with my spouse.

· I have been diagnosed with left sacroiliitis , S-1 facet arthopathy

o And possible:

§ Reflex sympathetic dystrophy

§ Pyriformis muscle syndrome

· Prior to the surgery, I had none of these problems at all.


  • Well it looks like some people are reviewing my post, however I did fail to say what I have tried so far and that would be a disadvantage.

    Recovery from Bone Marrow donor preformed at EDITED. NMDP

    Physical therapy 12 weeks
    Acupuncture 4 weeks


    Topamax 25 mg provided no relief and left me in a state of non productivity 90 days. 7/29 Difficulty with Memory & Difficulty with Concentration/Attention

    Lyrica 50 mg provided no relief and left me in a state of non productivity 90 days. 8/15 trouble concentrating,dry mouth

    Hydrocodone provided pain relief and left me in a state of non productivity, Constipation,Dizziness , did not effect numbness in left buttock.

    Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.
  • This was the response I received by the program’s Bone Marrow Advocacy Program Manager during a phone conversation .

    When I asked where I can find medical treatment that will not limit my production at work, I was told to “ask around”.

    This is why I posted the above items, can anyone recommend a proper venue that I can receive recommendations to archive my pre-donor health?

  • I was thinking when they went to extract the bone marrow could there be a chance they hit a nerve? Possibly even cut right through it?

    Have you asked for an EMG, nerve conduction test? What specialist have you visited? There has to have been something done wrong. You need to get your hands on your medical records. If you Dr. did something wrong you only have up to two years to file a claim againts them.

    Was the bone marrow taken from the left hip?

    I've heard of some bad stories of individuals getting shots and their siatic nerve was hit with the needle and have never recovered.

    I don't know what happened and if you can get back to presurgery state. But a big opps must have happened when you got that procedure. You need to act fast and on your own behalf. Call a lawyer to get the ball rolling.

  • Sorry you are having so many problems. What was your original surgery? I assume a lower lumbar fusion of some sort....are you sure it was the harvesting of the bone that is responsible for your current problems, or could it also be problems associated with the fusion?

    It would seem that in a year's time you should have recovered from the bone harvesting. I assume it was taken from the iliac crest?
  • I did have a EMG, nerve conduction test the doctor who did it did it on the right leg to get a base line and then did not do it on the left leg That was were they first sent me, his approach was drugs and I do not function well with drugs.
    understand the two year comment I have found no lawyers that want to take the case, for some reason. I may have to go to the DC bar for guidance.

    Bone marrow was taken from both sides right and left. Two skin entry with 40 extraction point from each side 80 total extraction points.
  • My original surgery was bone marrow donor for a non related person.
    Prior to that I enjoyed running walking and the other pleasures of life.

    Yes agree 4 weeks I should have recovered at a year I have lost to much work (side) and have lost my scene of humor.
  • the fusion part of your response i do not understand could you explain?
  • I just saw your question to me. I'm sorry. I thought you were referring to the harvesting of your own bone for a fusion surgery on your own back. This is commonly done, and since you were on the board pertaining to back pain, I just made the assumption that you had spinal surgery.

    Now I see that you were a bone donor and that the procedure resulted in the pain you are now experiencing.

    Have you obtained the operating room notes from your surgery? You can obtain those by calling the records office at the hospital. You will have to sign a permission form to get the records.

    Clearly you have a problem that did not exist prior to your

    I am really sorry you find yourself in this predicament and hope that you can get it resolved.

    xx Gwennie
  • Is EDITED connected to the university? I should think they would be willing to treat you with one of their spinal specialists -- either an orthopedic spinal specialist or a neurosurgeon -- since they are the ones that caused the problems...or at least it seems that way.

    Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.
  • Yes it is connected to the university, I was shocked to hear on the date of my discharge that any follow up would have to be done at the donor program managers site not at EDITED, I was told this when being discharged by the RN.I thought it strange but only expected a short recovery time not this.

    Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.
  • I keep on being told to seek legal assistance, any ideas on how to gain legal assistance without hurting the Bone Marrow Donor program? As time goes on it is wearing me down both emotionally and physically my concern is as I grow older (past 47) my ability to work will diminish and I will have no recourse that will cause my family to suffer more than they have already.

    Any assistance will be gratefully accepted.

    USMC Ret
  • You could call a PI attorney in your area for a consultation. Usually PI attorneys do not charge for an initial consultation and usually do not charge a fee unless they win the case -- in which case they take a substantial percentage of the final settlement.

    I should think a PI attorney could tell you if you have a case and how to proceed or whether you can proceed without harming the program. You can probably find this much out with a phone call.
  • I agree about getting an attorney right away and try to get the surgical report from the hospital. Make a calendar daily with all your symptoms. Specialist visits etc. Call the patient relations Manager at the hospital where it was done. Just call through switchboard or the info is online usually at the the hospital website. They have a Nurse-Paralegal who takes info and sometimes arranges for settlement. Get your chart notes and surgical report from them. They have insurance so don't worry that it affects the program. It's wonderful thing you did to donate. I have facet joint arthropy and have had some relief with facet joint injections. Do you ave a Pain Management Dr. yet? i wish you all the best for you and hope you recover completely. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Thank you for clearing up the post, I was just trying to identify the knowledge base to the readers and responded to a question. My intent of this post was to take the advise given by the Bone Marrow Advocacy Program Manager, to seek out treatments. Since I do not have or know of people that have gone through these complications I am just at a loss on a workable solution/

  • Lumbalgia,numbness and tingling, lumbar segmental dydfunction, and deep and superficial muscle spasms.

    can any one tell me what this means?
  • Recently you requested personal assistance from our on-line support center. Below is a summary of your request and our response.

    If this issue is not resolved to your satisfaction, you may reopen it within the next 7 days.

    Thank you for allowing us to be of service to you.


    Long term effects of donating Bone Marrow , who manages care?

    Post Edited. Spine-Health does not permit the post of specific doctor names, addresses, email addresses, etc. If this information is important, I suggest you PM to a person that wants it.

  • Hi Richard,

    I'll start with saying you are to be commended for wanting to help someone that's battling a disease like leukemia or lymphoma and giving them the chance of beating their cancer. The odds of matching an individual who is not a blood relation are steep and you are truly a special person in your willingness to help a perfect stranger. I had been signed up as an unrelated marrow donor since the late l980's, but, had to recently have myself permanently deferred due to my spinal issues.
    I am quite familiar w/ the NMDP, I noticed in one of your earlier posts your signature indicates USMC retired. I would assume that you signed up as an unrelated donor while active duty since DOD is a huge supporter of the program. Were you active duty at the time of your donation? Perhaps you should contact DOD and see if they can assist you w/ the issues you have post donation. In addition, even if the donor center that coordinated your unrelated donation wasn't DOD, they should be very involved in after donation issues, have you spoken with the donor center manager and medical director? You are correct that followups are 'usually' done by the Donor Center as a weekly call to assess recovery status, generally, most people do not have the long term issues you have.
    I would also assume that a hematologist/oncologist did your collection - what does this individual say regarding these issues? I'm also surprised to hear that Donor Advocacy suggests you 'ask around' for medical treatment, they should be working hand in hand with the Donor Center and Collection Center to have you seen by the appropriate MD's, coordinating any necessary testing as well as covering the costs of these exams. As suggested by Gwennie & Charry you need to secure copies of your OR records as well as journaling who & when you spoke with someone and what they said. The NMDP has a Patient & Donor monitoring committee, please see the link below:


    It might be helpful to contact the committee in getting you the assistance you need to resolve these problems post donation.

    Please keep us posted.
  • I am in the same boat. I did a donation to an unrelated party and I immediatley identified a problem after the donation.I called the DR. and after some scans they concluded that the intern doing my left side had gone all the way thru the bone and broken off bone chips into my S.I. joint. They also identified a needle track going into my S.I joint and told me the joint was fractured. I got so frustrated with the follow up treatment that I vowed not to go back. With that said I recently tried to do a little jog and for a week my pain was ubearable so Im going to try treatment again. Hang in there and I will let you know how I progress. Im ex-Marine also. Semper Fi
  • Dave,

    I trust you are doing better, I have all but given up on returning to post health. I have used 500 + sick hours tried all med prescribed.
  • SavageSavage United StatesPosts: 5,427
    ..it was very generous of you to share your bone marrow and am sorry for the painful situation you find yourself in.

    I think the advice for pain management doc and lawyer are good ones and other advice posted above.

    Just wanted to encourage you in finding the kind of doc best suited to your needs. Most are going to do their best for you. Unfortunately, it takes so much time for test results and to find treatments that are effective for your situation.

    Hang in there and keep your communication with doc.
    Wish you the very best!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • Hi there, I am wondering if the bone marrow donor would message me. I am not too sure how this board works, but I would be interested in chatting. I think we have a few things on common.
Sign In or Register to comment.