complications after back surgery in germany

[kelly from ontario]

Hi Everyone
i have been on before asking advise.had severe back pain 2 yrs,unable to sit or stand in one spot.was on lots of narcotics etc.
was given Dr Zeegers name.researched and found out he was an excellent international spinal surgeon.contacted Mark and he helped me to get in contact with Dr Zeegers and the Betaklinik.flew to germany in may.had adr surgery L5S1 may 18th.woke up with no back pain BUT and was unable to feel the down the back of my legs-from waist to feet,no bladder or bowel function.scared++.Dr Zeegers and Dr Yung took me back to surgery to evacuate epidural hematoma(blood clot on spinal cord).the fluid causing compression of nerves.It is very important to have the surgery in the first 24 hours and we were in that time frame.
when i woke up i was still in same situation but Drs explained that this was considered a spinal cord injury and could take months to heal.i was like a stroke payient,i had to learn to walk again(.i had pre op physio and used to walk 6 days/week so i had good muscles at front of legs ).I was kept at betaklinik x 2 weeks and flew home with a catheter in place .dr zeegers and the doctors and staff of the Betaklinik treated me very well.Mark was also in touch with me and very supportive.I went to rehab at the local hospital for 2 weeks on my return home.
it has been almost 6 months and i can walk with no assistance,can drive my car,can walk on my heels and on my toes a bit but my left ankle is very weak and numb.i still have no feeling from lower waist at the back to back of my knees,decreased sensation in calves,no feeling left ankle and only feel 1/3 of bottoms of my feet(heels totally numb),baby toe and next either numb or hypersensitive.going to physio once or twice a week and my legs and feet are hypersensitive .nerves heal at a very slow rate so patience is a virtue..I have to self catheterize every 3-4 hours and must wear an attends for bowels.
i was not prepared for this complication(cauda equina) and i wont lie,i cried for the first 3 days,then decided to get up and do what i could.i still have the odd day where i need a good cry but i do have to be thankfull that i am no longer in constant pain,can sit and stand,can WALK!!!the doctors believe this could take up to 2 years for the nerves to regenerate and i have my fingers crossed and am hoping for the best because im not able to think of the permanent possibility at this point.i have no hard feelings or place any blame.i wanted to tell my story because it is a post op complication that everyone needs to be aware of.
i will say that Mark has always been there with any advise or just supportive words and i thank him for that.dr zeegers has not been very available to me since my return but i realize he is busy and his mother has been ill.I am a young 49 and was hoping to go back to work but that is on hold at this point.i recieve disability pension and am on neurontin (3000 mg /daily)and cymbalta(30 mg/daily) and tramadol. NO NARCOTICS!.when i feel down,i think back to day 1 when i had to be turned in bed,and 2 nurses to walk me.I always try to stay positive and continue to see life with a sense of humor.will keep you posted!!!

[Keano16]

Hello,

yes, post-operative complications are very important to think before surgery... I am glad that you are no longer in pains and I am sure your nerves will recover, suppose Neurontin helps this.

I am sure you will get better, just be patient and think positive.

All best

[dshobbies]

Kelly,

I am so terribly sorry for your circumstances. If you will allow me, I'd like to offer this piece of advice.

Upon waking up from surgery, I had no feeling in either leg... My right leg came back quickly, my left leg did not...

Post 18 months my pm advised acupuncture. This was the best advise I could have received. The dr. felt I could have improved far more had I come to him after 6 months instead of 18 months. If memory serves, I had acupuncture for about 6 months. 90% of the feeling has returned to my right leg, 60-70% to my left. My left ankle and foot still burn daily but most often I take no meds.

Though I could be wrong, I don't think acupuncture can do you harm but for me, it was a gift. It would be well worth your time and money to give it a try. A word of warning - not all acupuncturists are the same. Quality counts. This process is slow going. I went 3 times weekly to start, switching only to 2 times weekly after vast improvement. I think if I could afford it, I'd go again.

Good luck to you and I hope whatever remedy you try is successful.

Dale

[Maria]

Kelly,
I didn't have anything as severe as your post op complication altho I did have a failed back surgery in '92 that floored me with regard to the level of pain and consistancy.

I had trouble just "being" because of the severe burning cramping pains from my waist down to my feet that I had every day for 5 years post op. It was a torturous existance.. I won't lie and I took Elavil at the time for neuropathies as Neurontin wasn't yet used off label for neuropathies.

At the 5 year mark I noted less neuropathies tho still present in certain locations very strongly as well as worsening of overall spinal situation that would warrent using something and that was Neurontin (and pain medication as well as ESIs).

I took Neurontin for 12 years and then I was advised to stop taking it several months ago and switch to Lyrica because of feeling really mentally snowed (or stoned actually). During the course of weaning off the drug I realized I no longer had the horrible burning pain type of neuropathies that I've had since '92.

So.. now am not taking anything for neuropathies. I had been told I'd probably always be on something for this and really by this many years had no other expectations. Still taking pain medication every 24 hours tho WC is denying anymore lumbar ESIs (they were really helpful for me).

I've been very pleasantly surprised re the discontinuing of Neurontin (or lack of need)! I still have numbness and tingling type of sensations tho not the horrific debilitating type of burning pains ~ I'm very thankful.

Your attitude is great and I hope your recovery/healing will be continual and with marked improvement even if it does take time. I agree that it helps to stay positive as much as able and to have hope and really good spinal community support (Mark was very instrumental in helping me getting surgical opinions even thru WC) and others were "there" for me w/listening/support.

I believe that time is a great healer of emotions and for me physically I'm much improved as well or so I think if one judges improvement on a scale of less pain and greater activity/endurance/stamina.

Thank you for posting your own story and it's also uplifting to read because of your outlook and attitude! Best wishes for regaining all functioning again w/o the pain/probs. Hope you'll continue to post when able. Maria

[mmglobal]

First, let me say how it just tears my heart out to watch someone have such substantial complications from what seemed like a very simple and ordinary ADR surgery. I came to know Kelly as someone who was very positive about the surgery and was looking forward to the improvement that was expected. Her indications were very clear and her case seemed to be very straightforward. Having done a good amount of research, and being a nurse, she had no illusions about the surgery, risks, complications, etc… These issues were all as well understood as they can be. She had done enough research to know that she wanted to go to Zeegers. I had already been to the BetaKlinik and was able to give my first-hand account of what a first-class facility it was. Kelly was very excited and ready to move on with the next chapter in her life.

Kelly has maintained such a positive attitude through this ordeal, she is an inspiration. I know that she must have her moments, but it’s still amazing to me to hear her speak in such positive terms. Having to self-cath every few hours and to have lost control of her bowel function seems like such a horrible outcome, yet she still speaks of the pain reduction she has realized as being so substantial that she considers the surgery a success. She still extolls the virtues of the BetaKlinik, the doctors and staff.

One of the things I’ve seen about the best surgeons in the world is that they do not just accept the poor outcomes. They study them intensely to see if there is something they’ve missed, or if there is something they might have done better or differently that could have made a difference. I’ve been able to discuss Kelly’s case extensively with Dr. Zeegers. From his perspective, the surgery went well. There was nothing unexpected and no reason to expect such a complication. While hematomas are relatively rare, they do occur and with spine surgery, the results can be devastating. The good surgeons and hospitals are looking for them, because a fast response is key. Fortunately for Kelly, they were on top of things and she was being rushed into surgery less than 24 hours after her ADR surgery was over. The hematoma was handled in an appropriate time frame and again, there was no reason to expect such an outcome.

(*** Please remember, I am not a doctor. I am relating what I have perceived and I can be completely wrong. I do not speak for Dr. Zeegers, the Betaklinic, etc…)

While it is impossible to know for sure what happened, reviewing Kelly’s case gives some speculation about what may be the reason for the severity of the complication. Like all spine surgeons, Dr. Zeegers has seen his share of hematomas, but results like Kelly’s are something he’s not seen in his career of thousands of lumbar spine surgeries. What can be different about Kelly’s case? While her case seemed very straightforward, her annular tear us unusually large. This may be part of a triple or quadruple whammy that all add up to the unexpected severity of the symptoms from the hematoma. With the large annular tear, abutting the dura, it may be possible that the dura was already compromised or weakened, such that the impact of a hematoma is substantially worsened. Perhaps a hematoma coupled with a normal sized tear or more room in the canal area or a stronger (or uncompromised) dura would have resulted in the normal outcome: surgery to deal with the hematoma, but not the ongoing cauda equine syndrome that she’s experiencing. Again, there is no way to know for sure.

Note that I share information about her case with her prior permission. This is one big annular tear:


When I was talking to Kelly a few days ago, she said something that stuck with me. I had been talking about her positive attitude and how I thought it helped her recovery, remaining positive, dealing with the issues as best she can, and lashing out in a negative way. To paraphrase, she said something like, “That takes a lot of energy to be that pissed off. I’d rather not hang on to all the negativity and negative energy!”

I hope I’m never faced with the adversity that she’s experiencing, but if I do, I hope I can face it and make the best of it like she has done. Sadly, dealing with so many spine patients, the number of poor outcomes are substantial. We all know what we are facing when we elect to undergo such a big surgery (or any spine surgery for that matter.) We never think it can be us. Very few are prepared for a poor outcome.

The good news is that she has seen improvement in the last month. I’m sure that she’ll see frustrating plateaus that will scare her into thinking that the improvement has stopped. But she’s still improving and that gives us hope. We can all benefit from getting some of her positive outlook. It's wonderful that she can spread it around so freely without diminishing her supply. That is a talent we should all work on.

All the best,

Mark

[Keano16]

Kelly, I wonder how are you?

[marijo]

Your post was marvellous. I had complications after my surgery way back in 2003, when a screw was put through my spinal canal instead of through the pedicle. A couple of years later I had four or five prolapses. i.e.. just about everything and a bit more. Then my bladder froze, and large intestine stopped working. I was self catheterising, and three years ago was given an ileostomy, (not reversible) as my bladder had packed up altogether. I still have a lot of pain, but I get around, and like yourself I try to think positively. I had to stop work way back, but my life has filled up with other stuff, and I've moved on.
I hope you have continued to improve, and that you enjoy a reasonable quality of life.

[Keano16]

How your intestine stopped working, and how the doctors connected the intestine problems with your spine? I am very interested in this... Thanks

Sorry to read this, you really went trough real hell.

[kelly from ontario]

Hi everyone
just wanted to give an update.it has been over a year since my surgery in Germany with dr Zeegers.I now have ankle reflexes.my left ankle is weak and i wear a support when i am out walking.I can feel my calves-(r calf-75%-left calf -50%)and i can feel more of my feet although the l foot is still ultra sensitive.I have no feeling in the back of my upper legs to the waist.still have no bladder or bowel control.i empty my bladder via a catheter
every 4 hours and treat my bowels regularly.i wear attends diapers(which now look like underwear).this is the most difficult part.
This part is hard to explain but i have terrible nerve pains down the backs of my legs into my feet even though the skin has no feeling.my doctor said she thinks the nerves are trying to reconnect.nerve repair happens very slowly and life happens very quickly, so no wonder we have no patience(lol).I try to get out and walk as much as i can.i now have a dog and he is great company and a reason to get outside.some days i am so tired from the neurontin(2800 mg/d)that i can hardly function so on the days i have some spunk i get going.The most positive thing to come out of this is that i have no back pain and that is so huge.I could not have dealt with that any longer.i take no narcotics
and am happy about that as well.

i remain positive and hope for more improvements.I am realistic enough to know that i may never recover fully but really hoping the bowel recovers if nothing else!
hoping you all the best and will try to keep you posted.thank you for you interest and your support
kelly

[dshobbies]

Kelly,

I'm glad you continue to improve and hope that stays the course. My doctor also told me that those needle piercing nerve pains were good It has proved to be true.

My hope is that your continued improvement relieves you of the catheter and
Depends. Nerves take their sweet time but can get there, especially with your positive attitude. Good luck and please keep us posted.

Dale

[mmglobal]

Kelly, thanks so much for posting the update. It's great that you have no back pain! I'm sorry about the serious complication you suffered. I'm glad to have stories like this here so people understand that with spine, there is always a risk.

I'll keep my fingers crossed for you. Hopefully, you'll continue to improve. I'm sorry that the nerves 'waking up' can be so painful, but that is much better than the alternative.

Let's catch up soon. All the best,

Mark

[Maria]

Kelly,
Thank you for the update and your positive attitude. I hope that while the nerves may be regenerating that it will be less painful and that your bladder and bowel function will return.

Stay hopeful and positive please keep us posted on your progress.

[ADR seeker]

Could stem cell injections help her nerves to regenerate? Also, can the Neurontin be impeding the healing process.?

[ADR seeker]

Cauda Equina Syndrome Causes

Cauda equina syndrome is caused by significant narrowing of the spinal canal that compresses the nerve roots below the level of the spinal cord. Numerous causes of cauda equina syndrome have been reported, including traumatic injury, disk herniation, spinal stenosis, spinal tumors (neoplasms), such as metastatic tumors, meningiomas, schwannomas, and ependymomas, inflammatory conditions, infectious conditions, and accidental causes by medical intervention (iatrogenic causes).

Trauma

Traumatic events leading to fracture or partial dislocation (subluxation) of the low back (lumbar spine) result in compression of the cauda equina.

A collection of blood surrounding the nerves following trauma (epidural hematoma) in the low back area can lead to compression of the cauda equina.

Penetrating trauma (gunshot or stab wounds) can cause damage or compression of the cauda equina.

A rare complication of spinal manipulation is partial dislocation (subluxation) of the low back (lumbar spine) that can cause cauda equina syndrome.

Herniated Disk

Most disk herniations will improve on their own (are self-limiting) and respond well to conservative treatment, including antiinflammatory medications, physical therapy, and short periods of rest (one to two days).

Cauda equina syndrome results from a herniated lumbar disk in 1-15% of cases.

Of lumbar disk herniations, 90% occur either at the vertebral levels L4-L5 or L5-S1.

Seventy percent of cases of herniated disks leading to cauda equina syndrome occur in people with a history of chronic low back pain, and 30% develop cauda equina syndrome as the first symptom of lumbar disk herniation.

Males in their 30s and 40s are most prone to cauda equina syndrome caused by disk herniation.

Most cases of cauda equina syndrome caused by disk herniation involve large particles of disk material that have completely separated from the normal disk and compress the nerves (extruded disk herniations). In most cases, the disk material takes up at least one-third of the canal diameter.

Spinal Stenosis

Spinal stenosis is any narrowing of the normal front to back distance (diameter) of the spinal canal.

Narrowing of the spinal canal can be caused by a developmental abnormality or degenerative process.

The abnormal forward slip of one vertebral body on another is called spondylolisthesis. Severe cases can cause a narrowing of the spinal canal and lead to cauda equina syndrome (see Multimedia File 3).

Tumors (Neoplasms)

Cauda equina syndrome can be caused by isolated tumors (primary neoplasms) or from tumors that have spread to the spine from other parts of the body (metastatic spinal neoplasms). Metastatic spine tumors are most commonly from the prostate or lung in males and from the lung and breast in females.

The most common initial symptom of people with cauda equina syndrome caused by a tumor (spinal neoplasm) is severe low back and leg pain.

Later findings include lower extremity weakness.

Loss of feeling in the legs (sensory loss) and loss of bowel or bladder control (sphincter dysfunction) are also common.

Inflammatory Conditions

Long-lasting inflammatory conditions of the spine, including Paget's disease and ankylosing spondylitis, can cause a narrowing of the spinal canal and lead to cauda equina syndrome.

Infectious Conditions

Infections in the spinal canal (spinal epidural abscess) can cause deformity of the nerve roots and spinal column.

Symptoms generally include severe back pain and rapidly worsening muscle weakness.

Accidental Medical Causes (Iatrogenic Causes)

Poorly positioned screws placed in the spine can compress and injure nerves and cause cauda equina syndrome.

Continuous spinal anesthesia has been linked to cases of cauda equina syndrome.

Lumbar puncture (spinal tap) can cause a collection of blood in the spinal canal (spontaneous spinal epidural hematoma) in patients receiving medication to thin the blood (anticoagulation therapy). This collection of blood can compress the nerves and cause cauda equina syndrome.

[kelly from ontario]

Hi
It has been 2 years since my Adr surgery at the Betaklinik with Dr Zeegers.I had a post-op complication-a blood clot on my spinal cord L5S1.It was evacuated but now have cauda equina syndrome as a result.
I have had no new improvements since my last post but have had some new problems.My artificial disc is open 12 degrees when i flex(bend forward) and is causing me alot of pain.Sitting now creates alot of back discomfort.I have been to a local spine surgeon who feels I need revision surgery.London science hospital doctors have refused to see me (as I had the initial operation elsewhere).I have been in touch with Dr Zeegers also.I am unable to afford to go back to Germany for further surgery.That was a one -shot-deal.I wish I could go back but it is not an option at this time.I feel things moving backwards again.I still take neurontin 2900 mg for nerve pain,Tramadol 200 mg for pain,Cymbalta to enhance nerve medication etc.
I remain to have nerve damage to lower back -feet.No bladder or bowel control.Have recently been to a seminar re "peristeen" system for bowels and am waiting for the ok from my insurance company.
I still keep in touch with Mark who is a great support for me.Dr Zeegers stated that my husband was a "good man" as we were still together.(as i now have issues with sex,bladder bowel etc)I took excepion to this but at the same time I love and respect my husband for being here for me(for better,for worse).
I guess I am not as positive about my outcome as I was when i felt there was a chance to recover from Cauda equina syndrome and of course now having back issues but I still face each day with a good attitude and a sense of humor.
I would be interested if anyone knows a spinal surgeon in the Montreal area?I know Dr zeegers did some teaching there.Thanks for keeping up with my progress and will check in frequently.Thank you for all the info and encouraging words.It is so appreciated!!
kelly

[Maria]

Hi Kelly,
I just wanted to say hello and wish you the best with your continued spinal endeavors. Probably easy to say and harder to do however we just have to plug on here with the stuff that comes along with our bad back journeys. Some more than others or course. I do wish we all could get permanent relief or at least very near relief!

Please continue to update as you're able. Meanwhile wishing you and your family and everyone actually a good Holiday Season.

take care,

Maria

[nomorepain]

love your positive energy it so helps the mind body & soul and it is infectious to others around you.sorry to hear about your complications. that is one of the reasons this website is so great we share our personal experiences good or bad and we all read how different we are. same surgeries different outcomes. so back to the nerve issue..... I can remember after my adr surgery my nerves were very active and painful for 2 to3yrs, the further out from surgery the pain seemed to subside.

[Maria]

Hi Kelly,
It's been a while since you last posted and I was wondering if you had revision surgery?

I didn't know what it meant to be "open 12 degrees" at the site of your ADR but I understood the rest of what you were saying with regard to the pain that was resulting.

I'm hoping that whether you've done nothing or something (surgery) you're not experiencing as much pain as when you last posted. If you are experiencing more pain/problems I hope that won't keep you from posting. I'd still like to know how you're doing~ take care,

Maria

[kelly from ontario]

It has now been 3 years since my surgery.My adr is still not at a perfect angle but Dr Zeegers assures me it is adequate.The back pain has settled down again and is seldom painful.The tingling nerve pains have also settled down .I still have shooting pain down my leg and out my heel at times but is manageable.No change in the bowel,bladder or skin sensation since last update.I do believe this will be a lifelong issue.I do have an excellent Rehab Dr and she is trying to find someone with cauda equine for me to talk to.(Yes,i did try some of the forums but some are so depressing I cant be part of it).cauda equine is rare so it may be harder than she thought.My heels are dead so I never can tell if my socks have turned or come off.Hard to get shoes on without long shoehorn.absolutely no sensation from back of knees to lower waist at the back.(have fallen off a couple chairs because I misjudged either the size of the chair or my butt)lol.
Life goes on.My youngest son is off to university next fall.I have 2 dogs that need walked so that gets me up and outside.People tell me they cannot tell there is anything wrong with me by the way I walk.Thats great!!
Have not worked since 2008 and miss my job.Have volunteered with the legion and nursing homes but am not reliable as I never know how I will feel .have decreased from 2900 mg Neurontin to 2600g/day and still hoping to decrease a lot further.thank you so much for theopportunity to speak to you all as you are so knowledgable about the issues and it makes me feel better to know that strangers do care.Have a great Christmas season and will update again in the summer.(will check for any responses though)
kelly

[Maria]

Hi Kelly,
I hope you're still checking the forum as I just read your most recent update.
Those are some interesting symptoms (areas of numbness) which I'm sure follow a certain nerve pattern but I really never knew it was that involved re cauda equine. I guess there are varying degrees. Amazing that you can walk and no one can really tell that there is anything amiss ~ that much is good.

I know what you mean re some of the forums being too depressing to be part of as I felt that way when I had such long lingering bad results from my 2nd spine surgery and had symptoms that lead me to be diagnosed with arachnoiditis. It was never diagnosed by MRI but the doctors I was seeing at the time said it was possible to have it and not have it diagnosed with MRI. Eventually and it was a long eventually the burning pain that I had from waist level in my backside down thru out my legs bilaterally and to my feet subsided but it did take from '92-2006ish. I finally stopped taking Neurontin in 2009 I believe.

While I do still have back issues and back pain/flare ups my latest problem has been something with my feet that I've had going on for the last 5 years. It's called Posterior Tibial Tendonitis. I had so much trouble with pain in my feet I got a wheelchair in November but have not had to use it since bracing my feet daily now all day long and wearing a certain style of very supportive tennis shoe (supportive for pronating ankles). And I just saw a Podiatrist that specializes in treating this condition and have had bilateral braces casted last week that should be ready in 10 days or so. I will then wear these braces (with built in orthotic) everyday until the summer at least and hope that the tendons can have some benefit. I might be able to take care of my dog again (my husband and I are separated and he has been taking care of her for at least 6 months now).

Anyway otherwise things are good and I am happy to just to be able to walk without pain even if I have to wear braces. I hope they will be lightweight and tolerable for my spine!

I had hoped to maybe return to work at some point in some capacity though I too have that "reliability issue" though who knows an opportunity might present itself in the future in some manner so I'll keep a positive attitude and to coin the old phrase of my generation "keep on trucking" :-D

Wishing you and your family a Happy Holiday Season and looking forward to hearing from you in the New Year! Maria

[mmglobal]

Kelly, thanks for the update. I'm so sorry about the continuing CES.

I can't believe it's been 3 years. I've heard of others who have trouble estimating the size of their butts following spine surgery. (Sorry for the stupid joke, but I'm trying very hard not to joke about Mayor Ford... and I know you appreciate a chuckle, no matter how bad things get.)

People do not understand the reliability factor. Just because you are OK some of the time does not mean you can hold a job.

Take care.... call if you'd like to catch up. all the best,

mark

[Gktm300]

Things like this is what scares me about surgery. I'm so sorry for your problems if you ever need a friend I'm here kelly