Hematoma from L2-L5 post laminectomy
Had a 4-level laminectomy in March because herniated discs were impinging on the spinal cord and nerves were compressed leading to bowel and bladder incontinence.
Since then I've been in the ED at midnight 4 times for Toradol and Cortisone shots for incredible nerve pain and leg weakness.
Had an MRI last month which shows a "seroma or hematoma" and edematous tissue that fills the entire surgical bed. Neurosurgeon tells me this is to be "expected" and normal but it in no way contributes to the increased pain and weakness worse than before surgery. And that it may NEVER go away.
Pain management says I'm stupid for having the surgery and says there nothing he can (or will) do.
BTW, before anyone else tells me I shouldn't have done this, a decade ago I had successful laminectomies at the Laser Spine Institute in Florida (no longer in business].
Has anyone else experienced this?
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It is perfectly reasonable to attempt another procedure which has proven successful previously!
I fail to grasp the "reasoning" of your medical supporters... there is the shock of the present outcome but the shock from "non-supporters" is the most cruel.
A second opinion would seem the most expediant course of action.
Is there a Mayo Clinic you could access?
At one point in my past medical trials, at a point of exasperation, my 'spine' team decided on a course of prednisone, as nothing else was working ..it worked! (not suggesting that would be the cure all) but getting sound advise will give you some direction, and possibly a little bit of Hope!
All the best in your hunt for assistance!
Please let us know how you are navigating through this storm.
@mskow Welcome to Connect. I was looking for some literature about seromas from post operative spine surgeries and I found a few links. Some of these indicate that surgery may be able to resolve a seroma. That being said, I would find the best surgeon that you can, and I would agree Mayo is a great place to seek care. Mayo takes cases that other surgeons refuse. I am a Mayo spine surgery patient and was very impressed with my results. My surgery was for spinal cord compression at C5/C6. My neurosurgeon, Jeremy Fogelson, is a spine deformity expert and you could ask him to review your case if a trip to Rochester, MN is possible for you. If you do want to seek care at Mayo, first check to see if Mayo accepts your health insurance as "in-network" as you know spine surgery is very expensive. If you are applying for care at Mayo, they will review your case without charge to determine if they can help. Dr. Fogelson likes difficult cases and he teaches in the Mayo Neurosurgery program. https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Here are some links. If you wish to apply to Mayo for care, you may use this first link to request a call from a coordinator. http://mayocl.in/1mtmR63
Mayo Clinic Insurance & Billing
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
Literature about post surgical seromas
International Pain Management Reports Case at a Glance:
Spinal Seroma in a patient with lumbar Fusion
https://painmedicine-casereports.com/current/pdf?article=MzI3&journal=17
Journal of Spinal Cord Medicine
Posterior cord syndrome associated with postoperative seroma: The case to perform a complete neurologic exam
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7801031/
I am sorry your providers have not treated you well. It sounds like your surgeon doesn't want any blame for this outcome. The medical literature I found validates what you say that these symptoms are caused by fluid buildup from the trauma of surgery. I think your surgeon is just protecting himself and no longer wants you as a patient. There are better surgeons out there. I know how hard that is because I had 5 surgeons refuse to take my case because they didn't understand it, and I was the recipient of some remarks from providers and their nurses. I went to Mayo and everything turned out well. Would you consider seeking an opinion at another medical institution?
TY. I find it more than a little ironic that so many of you recommend going to Mayo. I actually only found this Connect newsletter on a recommendation from the Patient Experience people after I was REFUSED care at Mayo because they no longer accept my insurance -- as out-of-network -- because they are "short-staffed" as of Febuary of 2023. Yes, that is what I was told!
Yet they can spend $3 billion (yes, billion with a B) running ads I've seen on TV touting their reputation being the place to go for answers you cannot find anywhere else!
I contemplated changing insurance when I can thru Medicare Open Enrollment but there are only 2 companies with Mayo in network and I've had negative experiences with both back in the day when I was still working. Also, there is no guarantee that they would accept me as a patient any way. I've seen in the Auto Immune group that people desparate for answers have been turned away from Mayo.
Jennifer, I didn't mean to respond in such a negative manner to your suggestions. I appreciate you taking the time to seek out those links and send them to me. As you might imagine I, too, spent a far amount of searching Dr. Internet and found any number of articles that cite this development as being somewhat rare. Yet the neurosurgeon at Froedtert Memorial Hospital in Milwaukee, WI (supposedly the best in the area) insists that this is "NORMAL" that there is no impact on my negative results, and that there is nothing to be done.
I'm collecting names of reommendations and will decide where to start trying to find answers. If I'd not had such successful surgery in the past I might not have had this surgery or might no just accept my fate.
Thank you again
Yes, the 4 ER visits for Toradol and steroids injections that have helped (but not permanently) have shown that might be a prudent course of action. But the MRIs "prove" no impact ... I do not understand how a laying down MRI can be extrapolated to what happens when one is standing, sitting, walking. Liquid, or even semi-solids, will pool to wherever the lowest point is. Or have the laws of gravity changed since I was in school (a hundred years ago;).
@mskow Thank you for your post. I do understand being frustrated. I went through that myself when 5 local spine surgeons turned me down and I had spinal cord compression in my neck that all of them could see. I hadn't tried Froedert yet, but had thought about it. What they didn't understand was how that created pain all over my body and they were afraid to take me as a patient. I came to Mayo after I found medical literature with cases like mine, and I found that because of reading literature authored by a Mayo surgeon and looked up terminology. That was my answer after 2 years of being dismissed, and spine surgery gave me my life back. I think that 5 refusals helped me get accepted at Mayo because they really try to offer expert care that cannot be obtained elsewhere. If they are offering exactly the same care that you can get at home, why should you need to incur the extra expense of travel? That is why I recommend Mayo because my experience as a patient there was exceptional. Mayo really is a special place and I didn't know medical care could be like that. It spoils patients when they can't find the same level of care as they received at Mayo. All patients are welcome here on Connect, and many are Mayo patients who like me, just want to help other patients after receiving great care. I am a volunteer. The moderators and director here are employees. The purpose of the forum isn't to recruit patients for Mayo; it is to share information that can help and to give support and that can be anywhere.
I do know there is a nursing shortage because I have heard that from a friend who is a nurse at Mayo. I just checked the job posts for nurses at Mayo in the Rochester campus and there are 18 pages of them seeking nurses across many specialties. In order to have more capacity to help patients, there must be a pool of trained medical professional candidates to hire in order to increase medical capacity to patients. I see the TV commercials too for Mayo, and they have to stay visible because they are a destination medical facility. The local rural community in Minnesota does not have enough patients to support a large medical institution, so reputation and staying visible nationwide is very important. We also just had a few years of pandemic where medical professionals decided to leave their professions.
Mayo has to answer about insurance and billing, but what about considering real Medicare and not a "Medicare Advantage " Plan. The "Advantage" plans kind of act like HMO's in that they mostly work for local hospitals or ones in the same state. When you have real Medicare, you can use it anywhere in the country, and Mayo in Rochester accepts real Medicare along with a supplement insurance like Mutual of Omaha. Call billing and ask because it isn't always the same at every campus. I called the Mayo billing department to ask that question when I need to make the same decision because I wanted insurance that would be in network if I needed to return to Mayo as a patient. Since enrollment is coming up, you could choose to go to real Medicare and have an option to be seen at Mayo. "Advantage" plans are not an advantage, that is just marketing for profit.
Don't let past disappointment color this decision. If you need to seek an opinion at Mayo, you would be able to send in records when requesting an appointment and get that reviewed at no charge, but not having insurance that is good will kill the opportunity. If on review, Mayo doctors thought they could help, you may be offered an appointment. I do know, that my surgeon there likes difficult cases, and if you are one like that, it may work in your favor. He is one of their best and has a waiting list like all good surgeons.
Yes, it can be hard to get an appointment, but sometimes patients re-apply and are accepted. I think your test results indicate that you deserve another look. If you get the insurance worked out, you could try. Also, there are other hospitals connected to Mayo in the Mayo Clinic Health System with locations in western WI and northern IA. Often they are staffed by Mayo trained doctors, and those doctors have direct access to refer patients for further evaluation at the main Rochester Mayo Campus.
I know how good my surgeon Jeremy Fogelson is, and to get his eyes onto your imaging may make a difference if you can get your ducks in a row to make that happen. He is one of Mayo's best surgeons and does very complex surgeries for deformity and teaches in the neurosurgery program. FYI, Cleveland Clinic is similar to Mayo, and also recommended to me by my doctor when the local surgeons backed out. There are also "Upright" MRI machines that take images in a seated position.
So what do think? Does this give you a new strategy?