New Member – GBS after Back Surgery
AnonymousOctober 27, 2008 at 1:13 pm
I am new member and would like to know if anyone has had a similar GBS experience. I was having my usual back pains, but it was not going away. I went to my doctor and had an MRI and I clearly had a herniated disc between L3 and L4. I tried physical therapy and medication for about 3 weeks and then the pain got so bad that I could not stand up straight. I went to the ER and had another MRI that indicated the herniation was worse. The neurosurgeon immediately scheduled me for surgery. Up until this point, I had no symptoms of GBS. The first procedure was a microdiscectomy and when I came to, I could not move my feet. The surgeon was puzzled and to be sure there were no clots or anything he missed, he went back in and performed a laminectomy. When I came to the second time, I could still not move my feet. The next day I was seen by a neurologist who within a few minutes, diagnosed me with GBS. The day after that I woke up and mid-morning my calves were getting numb, then mid-afternoon my thighs started to become numb. That was also the day they started the IVIG treatment. I started to improve immediately and I am now walking without a walker.
I have searched online and I have yet to find another case where someone woke up from surgery with symptoms of GBS. The one thing that really stands out is how so many cases differ so many ways. My GBS was agressive, but I am recovering fairly quickly.
Has anyone heard of a similar case?
This discussion board is great! Thanks for all who contribute!
AnonymousOctober 27, 2008 at 5:19 pm
I had a triple bi-pass and was under for 6 hours. Every doctor involved in my surgery was advised of my GBS and I made sure they knew what it was. Some of the meds to be used in my surgery was changed.
I as you have the same back problem but they will not do it until I have gone 15-24 months with no problems from my Bi-Pass.You were blessed to have doctors that realized what you had. Remember NEVER take a flu shot as this is how I caught mine and also tetnis or neumonia shots. If you find a doctor that says you have nothing to worry about find the nearest door. I have seen that 60%of the neuroligist do not know what GBS is. so be very very careful Did the surgery correct your problem (Steve)
AnonymousOctober 27, 2008 at 6:44 pm
Ron, In hindsight, I had symptons of GBS, pins and needles in the feet, low back pain and fingers going numb. I had open heart surgery and eight days after surgery I could not walk and was put in hospital for 21/2 months. I also had a lingering cough from a recent cold when I had the open heart surgery.
Glad you are recovering quickly. It is one year for me and I am still recovering, walk with a cane short distances and use wheel chair for grocery and shopping.
Take care and keep recovering
AnonymousOctober 27, 2008 at 8:07 pm
Hi Ron! Pleasure to meet you on the forum. I have been a complicated case! Due to past history of Lupus and then having a Thyroid go bad with cancer we still are not sure what happened to me after my spine surgery! I had previous nerve damage from my Lupus and a B-12 problem.
2006 I got ran over by an SUV in a mall parking lot. Have severe back pain and had Steroid Injection of the Spine. Got all numb and tingly after that Injection. But it only lasted that day.
May 14th 2008, I had a lumber laminectomy on 3 disk in the lower spine. L3 L4Land L5. All three disk were compressing the spinal cord. Have a few nerves rerouted away from the spinal cord. I actually did pretty good after the surgery except for an asthma attack. I developed alot of respiratory problems after the surgery. Landed in the ER a few times there and then on my 3rd week after my surgery. My nerves in my hands and feet went on fire! Got all numb and tingly and pain set in! It was horrible and scary. My left eye started going bonkers, part of my face was feeling strange. My neck felt like i was choking.
The spine surgeon once he saw me referred me to see a Neurologist and Rheumatolist since I had past history of Lupus. Still have Lupus! No spinal was even done! Just an MRI and NCV/EMG and that doctor only did my arms and went by the last EMG of my legs and they were never tested. He told me I had CIDP.
I am scheduled for Duke Medical Center on November 6th. Next week! It would really shock me if they tell me GBS! But not sure! They have to rule out Lupus as being the culprit and the thyroid issue.
All I have to say is after that spine surgery I had. It tore my body up! I got nerve damage all over now! Everywhere! The pain is now easing up some but it took a while and I am still not 100 percent normal now! Just recently had my thyroid removed and am hoping the thyroid is what caused my problems. We shall see next week what they tell me!
Welcome to the botched Spine Surgery Mysteries! Stacey in here is also another one that had a back problem and she started getting sick too! Will I have spine surgery again? NOT! Hugs
AnonymousOctober 27, 2008 at 8:59 pm
Welcome to this site. There are several people on this forum that got GBS associated with surgery. Last month I went to a GBS/CIDP regional meeting in Dayton to hear a neurologist speak and he said that surgery cuts into and causes exposure of parts that normally would be sealed (for example, cutting through nerves allows myelin to be released into the body so that the body can react to this normal protein that is normally sheltered away from exposure). That made sense to me, although your reaction–waking up with inability to walk is really a fast immune reaction. I have also heard that the stress and worry before surgery may set us up for an immune flare.
I hope you continue to get stronger.
WithHope for a cure of these diseases
AnonymousOctober 28, 2008 at 3:57 pm
Thanks for the replies! I guess the fact that the reason I went to the ER is because I couldn’t walk very well might have been a GBS symptom. I had been experiencing pain along the sciatic nerve for several weeks and it just increased to the point that I couldn’t straighten out. It does make sense that the surgery caused trauma to the spinal cord and released myelin into the system triggering an immune response. I feel fortunate to have been at a great hospital with an excellent staff when it happened because I definitely believe it could have gone undiagnosed and progressed farther up my body. Thanks again for the replies! This site is a great resource for folks with this crazy syndrome!
AnonymousOctober 28, 2008 at 5:45 pm
Hi Ron! That is good news that you got treated so quickly and did okay! I still question what happened to me after my spine surgery. Whatever happened back then tore me up! Still trying to get back on my feet and may never really get 100 percent normal again! But glad you are doing okay! Nice to meet you in here!
AnonymousNovember 4, 2008 at 12:43 pm
I just received the packet that is sent out to new members of the GBS/CIDP Foundation and the answer was on the Overview for the Layperson. On page 25, pain during the onset of GBS is described..”Interesting, the very first symptom in GBS may occasionally be low back pain that radiates into the buttocks and/or thighs, thus mimicking a sciatica type syndrome from pinched nerves in the back..When the initial presentation of GBS is a sciatica..rather than the more common combination of weakness, tingling and numbness, the doctor and patient may be initially confused and misled about the diagnosis.”. This is exactly what I experienced. What I thought was pain from a herniated disc was actually GBS. Because I did have a herniated disc, the neurosurgeon attributed my pain to the herniation. The only thing that confuses me is how different my symptoms were before the surgery versus after the surgery. Before the surgery I had lower back pain and sciatic nerve pain. After the surgery, I had no lower back pain or sciatic nerve pain, but I could no longer move my feet or my toes! This GBS sydrome is so crazy and mysterious! It is so frustrating and it is so hard to believe that I may never know what caused me to come down with GBS!
Thanks to everyone who replied. I appreciate so much that this website provides a venue for others who understand the experience of GBS.
AnonymousNovember 4, 2008 at 7:45 pm
Hi Ron! How strange you mentioned this! Before my surgery I had severe back pain and the Sciatic nerve was throbbing. I could not even sleep the pain was so bad. After the surgery. The back pain stopped and the sciatic nerve pain stopped but three weeks later after that surgery. I lost all feeling in my toes. My feet and ankles feel like dead flesh! Still no feeling in my feet. My arms got effected too! But my arms are starting to come back to life! Just so strange that we both had simular symptoms. I see a doctor at Duke soon and hopefully they will give me answers soon! Hugs
AnonymousJanuary 14, 2009 at 10:55 pm
I had hysterectomy surgery about 14 years ago, and no other health problems at that time. IMMEDIATELY upon awakening from anesthesia, I noticed very severe pain in my neck and back.
My doctor was very puzzled about this, but thought it was possibly due to being in an awkward position during surgery. Pain meds didn’t completely relieve the pain, even though I was put on a morphine pump.
My arms became weak and I couldn’t feed myself. Although I was in the hospital for a week, the doctors still didn’t know what was wrong. After released from the hospital, I was still in severe pain, and my arms and legs were weak. I went from doctor to doctor trying to find out what was wrong and how to relieve the pain.
I was out of work for 3 months, and could do nothing except sit upright in pain, day and night, barely able to sleep. The doctors thought perhaps a bulging disk was causing the problem. It took 2-1/2 years for all of the symptoms to go away, but finally I felt normal again.
Then, I had some minor surgery 6 years ago. The surgery and recovery were uneventful, but 2 weeks afterwards, I woke up with the feeling of sciatica-like pain in my hip and back like you described. Within 6 hours, it had extended to both hips, my entire back, my shoulders, and I was in so much pain I was crying.
The doctor at the hospital Emergency Room was puzzled about this, since there was no obvious reason for the pain. I was given a shot of Demerol, the pain subsided somewhat and I went home. I was back in the Emergency Room as soon as the shot wore off. My legs became weak, my arms and one vocal chord was paralyzed, and nobody knew why.
After 3 months of this, a battery of tests, 3 neurologists, and several other specialists, I was finally diagnosed with GBS by the neurologists at Johns Hopkins. They told me they didn’t know for sure why I got GBS, but since I had not experienced any of the other know triggers for the disease, it could have been a reaction to surgery.
Looking back, I now realize that I probably also had a “mild” case of GBS after the 1st surgery too, but it went undiagnosed, since I didn’t have the “typical” presentation.
Long story short, yes, surgery is a known trigger for GBS, just not an easy one to determine, and not the most common one. If surgery triggered your GBS, be very careful about having surgery again, unless absolutely necessary. And as several others have said, be sure that your doctors and anesthesiologist know that you got GBS after surgery before. I know it’s scary, but at least you are aware of the potential for problems.
AnonymousJanuary 16, 2009 at 7:39 am
They are saying with me Lupus with CIDP. Possible thyroid storm and CNS lupus all causing mine. But I still can’t figure out why I had an attack like that after my surgery.. I am doing much much better now and hope I never ever see an attack like that ever again. I fear surgeries now because of what happened and have gotten stuck with 2 surgeries since that attack. That horrible burning pain is now gone but I still feel dead in certain areas. Slow healing but getting better! Hope you get well soon and back on your feet again! Hugs
AnonymousFebruary 19, 2009 at 4:51 pm
My main doctor was Dr. Kazim Sheik in the Neurology Dept., although I also was examined by some of the other neurologists in the department.
Had quite an audience during my EMG test which lasted for 2 hours. Apparently the test results were not typical, so they kept calling other docs in to see it.
Dr. Sheik presented my case to the doctor’s committee and they concluded that I probably had an unusual varient of GBS. They did not know the the trigger, but said it could have been the surgery.
Hope that helps.
You must be logged in to reply to this topic.