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Regaining sensation after spinal surgery.

TJ7334
1 Recommendation

A dear friend of mine had spinal tumors related to VHL removed recently. He had lost some sensation in a leg/foot prior to the surgery. Now he has lost sensation in his lower torso, including the ability to sense/control when he has to go to the restroom.

I've read where a person will sometimes have a tingling feeling when the sensation is starting to return. My question is this: Is it typical to lose sensation in parts of the body following spinal surgery? If it is, what is the usual timeframe for having the sensation return? Is there anything that can move along the process? Is reflexology suggested?

Thanks.

Explore topics in this discussion:

Surgery Pain Paralysis Ataxia Hemangioblastoma

9 replies

mkj

I am sorry to hear about your friend's recent problems with sensation and bladder control. During many, many examinations with several different doctors, my son is always asked about numbness and tingling in the legs and whether or not he has had any bladder or bowel control issues. There is always a risk with any surgery and surgery on the spinal cord carries the added specter of paralysis.

There are several factors that come into play during spinal surgery. Our neurosurgeon has successfully removed four hemangioblastomas from our son's spinal cord with no damage. Unfortunately, on two other occasions the HBs were more difficult to remove because they had become attached to the cord. After a surgery in January, he lost some motor control of his right leg, and the ability to sense hot and cold in his left leg. He had general numbness in his left leg that did not improve a great deal either. He just had another surgery three weeks ago and lost the sense of touch from his belly button down. He is now doing therapy and is walking with a walker. The battle is to control your legs when you cannot feel them hitting the floor.

On the plus side for him is the fact that he never lost bladder or bowel control. He is slowly regaining some sense of touch in his right leg, but the left is very unresponsive. The best thing for your friend is to attend therapy and keep working on the repetitive motions associated with walking. There was a news story on GMA not too long ago about a young man who was completely paralyzed from the neck down. Through repetitive motion therapy, he is now able to take a few steps with a special walker. Apparently, the spine can "relearn" some of its previous functions. The process took him over two years to get to this point.

I am sorry that this is kind of a rambling post, but I have a lot of things spinning in and out of my mind. Prior to your friend's surgery, the pressure of the HB on the cord could have compressed it to a point where he may have had all the symptoms mentioned above. At that point, obviously, they have to come out. The last one that was removed from our son's spine had grown so large that the cord was compressed into a 'C' shape and several doctors that we talked to were surprised that he could even walk at all. So...you have surgery. I read the surgery report from our son's January surgery and in it the neurosurgeon wrote that he had to "sacrifice" a nerve to get the tumor out. I am quite sure that during the latest surgery, there was probably some more sacrificing going on.

Has he gotten better? Yes, but it is a slow process. He has not said anything about a tingling sensation during his recovery process. I looked up reflexology on-line, and in my mind, it looks like it is "out there" somewhere. I don't suppose it could hurt anything, but it sure looks like it walks like a duck and we all know what kind of sound they make. Hard work and patience will probably provide your friend the best results for a partial recovery from his symptoms.

Lyndon

Hi TJ:
I myself had a hemagioblastoma in the C6 root nerve inside the spine. I had a very difficult time post surgery with severe electrical type shocks running up and down my left arm and upper left leg, (the tumor inself was completely wrapped around the C6 root nerve with a cyst as well) They removed 4 of my vertabrae (C4-C8) Although I didn't experience bladder control issues but, essentially I was paralyzed on the left side of my body with what I said before was extreme pain/electrical type shocks running constantly up and down my arm and bunching up in my elbow area. I tried many many types of physical therapies to no avail...I then started accupuncture treatments and within a year I was walking better and the electrical shocks became less severe. My surgery was in 1994 and to this day I still have severe pain in my left arm, neck and occassionally the upper left leg which, I still have to take strong narcotics to ease the pain. But, I feel without the accupuncture I received I may not have improved at all. I'm not sure if accupuncture might help your friend but, it certainly is worth trying! Often times the nerves after being damaged can be channeled and repaired...at least as in the case with me. I would highly recommend seeking an accupuncturist in your area...in my particular case it helped tremendously...it's worth checking out. I hope this information helps!

TJ7334

mkj and Lyndon, thank you so much for your responses.

My friend was having fairly severe neuropathic pain prior to his surgery. While everyone dreads spinal surgery because of the risks, I truly believe that he was actually ready for it in hopes of getting rid of some of the pain. He was also have leg numbness. It was time for the surgery.

It's only been slightly over a week, but I think there is less pain than before. Knowing that most of the tumors have been removed and that some of the pain is gone makes having the surgery worthwhile. No one expects him to regain all of the sensations that he had before ... at least not this quickly. Yet we're all hoping that his progress is good and on tract. We're hoping that bladder and bowel control will slowly return and that the leg numbness will subside. Time will tell, but how much time is reasonable?

There may be no answer to that question. Perhaps sensation slowly returns and that with therapy the maximum recovery will be possible. I guess I'd just like to give him reassurances that it isn't unusual to be a week out and still have some loss of sensation.

MaryP

I also had surgery on my thoracic spine two years ago. When I came out of the surgery, I was numb from my waist down. The neurosurgeon was surprised as tests done during the surgery did not indicate any nerve damage. Regardless, I felt like I was walking on stumps and it was actually quite painful. (Seems ironic when you are "numb.") It took several months for the numbness to diminish. I still have decreased sensation, but it is much improved, and changes even still from day to day. Nerves, unfortunately, are slow to heal. I also saw a physical therapist who recommended using materials to stimulate the nerves and give them something to react to. Several times a day I would rub my legs with something soft, something a little rough, something warm, and something cold, etc. Over time I believe this helped. With regard to your friend's bowel/bladder issues, this too may take time to return. It may even be several months. I saw the most improvement about six months out. Hopefully, your friend's will be much sooner. The younger the quicker. Good Luck with everything. Thanks for being such a supportive friend.

TJ7334

MaryP:

What you've said makes a great deal of sense, especially the idea of trying to stimulate the nerves. My friend recently indicated that a simple foot massage felt amazing, and that he felt more and more sensations in his feet as the massage progressed. We'll try some of your suggestions...and thanks.

With regard to the bowel/bladder issues, he has just (a week+ out from surgery) started to gain some relief and have food pass through his system. However, there is no control...yet. Does anyone know how long it takes to regain bowel/bladder control and also if there are any therapeutic recommendations for strengthening the muscles in those areas?

FridayThe13th

I had a hemangioblastoma removed from my cervical spine October 17th 2007. I too had extreme difficulty with basic motor skills on the right side of my body. I still have the pins and needles feeling but use my limbs to the best of my ability. One thing I've learned is you can't force it and there is no timeline that everyone follows when they heal. I remember doing as little as humanly possible for about 2 months after that surgery. You can't imagine the intense pain you go through with that surgery. The only way I could describe it was it felt like when you get a blister that has popped open and gotten water on it...but it felt like that all over my body.

The doctors called the lost of sensation I have Ataxia. It's still here two years later and I don't know if or when it'll fully get better. I remember having to move my legs with my arms because it felt like they weren't there, but in time some sensation came back.

What I'm trying to say is it takes time. Ask him what he feels like he can do and go from there. Just make sure you tell him to NEVER give up and it'll get flustrating but do what you can and try to improve a little every day.

graciewt

My experience has been similar. In July 2007, a tumor was removed from my spine = c2 - c7. At first it was difficult to find a surgeon willing to do it [they were sure I would end up a quad]. I had just lost bladder function 3 weeks prior to surgery. It finally returned a month after. The sensation was bad in both hands and walking didn't happen easily [I sat most of the time, since I was afraid to try to go anywhere]. I had to relearn how to walk, and now I hardly even use my cane, let alone my walker - although my gait is not smooth and I can't run, dance, jump or swim. My hands are still numb, and I need home care to get me started since I can't dress or bathe or cook easily - I have permanent carpel tunnel like symptoms in both hands; in fact it's extremely hard typing this. Good luck.

TJ7334

Friday and Gracie, I appreciate your responses. Thank you.

It's been less than a month since my friend's surgery, and while it's been a tough road, he has made great improvement.

He's able to walk short distances while using a cane. Some bowel control has returned, although there is still a great deal of numbness in his lower torso. The sensation is returning very slowly, but at least it does seem to be returning. Periodically, the pain becomes intense. Medications help, but often it's a matter of just waiting until it passes. Some of the worse pain (headaches) was a result of steroid withdrawal-which we hadn't known existed but instead had thought was a result of the loss of spinal fluid. It was resolved by putting him back on steroids and weening him off more slowly.

Everyone has their own unique recovery time. My friend is very determined to recover as fully as possible and regain the sensations which he lost, but it's going to take some time. Like Friday suggested above, we're just hoping for a little improvement every day......and so far, we're (fortunately) seeing just that.

TJ7334

It's now October, and my friend's surgery was in July. To say that his situation has been frustrating would be a great understatement. He has had to practically beg his doctors for a referral to therapy, which he is only beginning now...3+ months out. There is virtually no recovery in the bowel/bladder control, he still has numbness in one leg and foot, walking is more difficult than prior to surgery, he has had extreme weight loss and a new problem has arisen: severe headaches. Initially, the docs assumed the headaches resulted from steriod withdrawal. Now they are saying low blood pressure. Whatever the cause, they aren't subsiding.

I realize that spinal surgery can produce devastating changes in a person, but the worst part of all of this is that my friend was given virtually no advanced warning of all of the possibilities .... and he has been given virtually no guidance since the surgery. Dealing with VHL is difficult enough. Having all of these negative surprises thrown at him without warning and without follow-up help makes everything even more trying.

Any suggestions?

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