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  • Tumor and SCI

    My best friend's father was recently admitted to the hospital after collapsing at home. He had had some weird pain in his abdominal area and weakness in his legs prior to having them give out. He went to the ER, was admitted, and they eventually (after 24 hours) ordered an MRI. Unfortunately, his doctor ordered an X-ray and MRI at L 5 and saw a vertebra "a little out of whack" and told him that the orthopedic surgeon would be able to fix it.

    I talked to my friend the next day and it did not sound right when listening to the fact that her father was unable to move his legs and had no sensation a little below his nipples. She pleaded with his doctor to call a neurologist in who was shocked to learn that they had performed the MRI at the wrong level. After a quick pin prick exam he immediately ordered a new MRI and found a fairly large tumor at T8. He went right into surgery and removed it.

    It has been a couple of weeks and he has had a little sensory return, but no motor. I am wondering if the delay of surgery has changed the outcome. I am appalled that his first doctor failed to find at least the level of the problem with a simple exam. I have always believed that the earlier decompression is performed, the better the outcome. Maybe that is not true for SCI due to tumors. It is a sad and frustrating situation.

  • #2
    My paralysis is due to a tumor in my spinal cord at T6/7. Chances are that tumor had been there most of my life. It wasn't until all the little aches and pains turned into major aches and pains, and I started falling even while using a cane, that my complaints were taken seriously. It took months to diagnose. I've had MRIs from my brain down to my hips, both before and after surgery. I know more about my spine, and organs than I ever wanted to know! Each and every future and current bulge and stenosis is noted, yet I've never experienced back pain.

    There was no need to rush to surgery with my type of tumor. I would imagine it's the same with your friends father. Tumors don't grow overnight.

    Good thing she put her foot down and insisted on further exam! Poor guy might have faced a second surgery to correct the real problem, if she didn't show better sense than the first doctor!

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    • #3
      LFC, sorry to hear about this. I don’t know if the delay is important here as SoFla says. Here are a new study I cam over from scientists in Florida dealing with spine tumour patients today. I don’t know if the person you talks about will benefit from it since his tumour is now surgically removed, but here goes anyway; http://carecure.org/forum/showthread.php?t=56714 Leif

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      • #4
        Leif, the study you quote deals with cancer near the spinal cord. The key word is "near." Very few tumors in, or on, the spinal cord are cancer. When the tumor is on the cord, chances are very good that a patient, in the hands of a really skilled team of surgeons, will walk out of the hospital in about a week. My tumor was in the cord, leaving me like LFC's friend.

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        • #5
          Tumors of the spinal cord are relatively rare. Much more common are tumors of the spine (the bone) which can erode the bone, causing collapse of the vertebrae and thus damage to the spinal cord. The majority of these tumor are metastatic (originating someplace else in the body), the most common being from prostate, lung, bowel or breast cancer. Of course the extent of the damage to the cord when the bone collapses is critical, and may have more to do with the severity of cord damage than the duration of any cord compression. It is unfortunately that spinal tumor or abscess is often a diagnosis that is missed for a long time while other possible diagnoses are pursued.

          Depending on what they found in surgery for your friend's father, in addition to his spinal cord damage, they should be looking for a possible primary tumor that could be life threatening in and of itself. There should be good consultation with an orthopedic or neurologic oncologist to determine the proper course of treatment for the spine tumor too, as often surgery does not remove all of it.

          (KLD)
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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          • #6
            KLE, Leif and SoFla, thank you so much for your replies. I really appreciate them. I talked with my friend and she said the doctor mentioned lymphoma. She has had to stay with her mother round the clock (she suffers from Alzheimers) so has not had a meeting with his "team" (PT, OT, nursing staff, etc) yet. She has asked me to be there at the meeting on Thursday, as she is feeling overwhelmed and wants the support. Although I have had experience dealing with my son's SCI, this is very different as I know so little about it. Any suggestions? (Questions I might ask, information that would be helpful, etc?) I so want to be of some help and support to her. She was so wonderful to me when my son was in the hospital and later rehab. I couldn't ask for a better friend. It breaks my heart that they are having to deal with this. One more thing, they are talking about starting Chemo and then radiation. Will that only cause futher damage and lessen the chance of any more recovery?

            Thanks so much for your help. I will pass on any information or insight you might have.

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            • #7
              If it is lymphoma, which I have seen in several of my patients, I would recommend aggressive treatment as recommended by the oncologist. It can add years for some people with this form of cancer. Without it, it can recur, which would be more likely to damage the spinal cord further than the treatment would. It is not an easy course of treatment though, so it will be important to ask very specific questions about what is involved, risks, and common complications.

              One of the biggest issues will be the timing of the chemo and radiation in relationship to any aggressive rehab program for him. Both can cause serious fatigue, and if he develops lymphopenia (very low white blood count) may prevent his full participation in rehab and even require protective isolation.

              (KLD)
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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              • #8
                The mention of lymphoma certainly makes this a horse of a different color! So sorry your friend has such a full plate. She's lucky to have a friend like you!

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                • #9
                  I went to the "team meeting" today for my friend's father and walked away feeling disillusioned. He is at a local rehab facility, which is nothing like the Model SCI center my son was at. It is new and nice, but things are done so differently. He is being cathed every 4 hours, but they are talking about putting in an indwelling for convenience sake when he goes home. They said it would lessen the risk of infection. (Is that true?) Also, he has a pressure sore, and they have him in diapers. I always thought that diapers would worsen a pressure sore due to moisture and the pressure of sitting on another layer of material.

                  My friend's father, has the most amazing attitude. He is so wanting to survive this ordeal, and is working like crazy to do so. Unfortunately, his is an uphill struggle. He will be undergoing chemo for about 14 more weeks which does not help his energy or the healing process.

                  Which leads me to my question - I understand that he needs the chemo to fight the cancer, but is there a chance that the weakness that the chemo causes is masking some recovery? I certainly hope that is a possibility.

                  Thanks for your help. I sure appreciate it.

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                  • #10
                    I share your concerns. A male should never have to be in diapers in rehab. A indwelling catheter will not only put him at more risks for UTIs, but also for urethral damage, stones, kidney damage and, long term, bladder cancer.

                    Perhaps you should help them look for a more appropriate facility. I would recommend a facility that is CARF accredited for SCI care ( www.carf.org ) if you cannot get him to a Model System Center. I forgot to ask if your friend's father is a military veteran? If so, a VA SCI Center would be the only way to go...and he would be eligible for care there as long as he has a honorable discharge.

                    Keep in mind that the center can recommend his management for his bladder, skin, etc. but he has the right to have control and make decisions. He can refuse the diaper, insist on a functional bowel program being designed for him, and continue with intermittent cath. Does he have the hand function to do it himself?

                    (KLD)
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                    • #11
                      KlD, thank you so much for your reply. He is not a vet, unfortunately. He has very limited resources and an unwillingness to be far from his wife. I am sure I irritated the staff at the meeting with my questions. I asked about the diapers, and the OT said, "the nursing staff does it that way and there is nothing wrong with it."

                      You asked about his hand function. He does have that, but he was awfully shakey today, and I got the feeling it was because of the chemo treatment. (The nurse and PT said he was having a bad day.) He has very little trunk strength, and once again, I wonder how much is due to chemo.

                      One more question - how do other Model SCI centers deal with someone whose body is not responding well to a bowel program? He tends to have small accidents throughout the day. The nurses talk as if it might just be the way it is. I can't imagine that, but maybe they are right. He still has his humor. He said, "Some people try to live a second childhood. I skipped that and went right back to my infancy - diapers, bib and all." It was funny, and yet I wanted to cry at the same time.

                      I don't have a ton of experience in rehab settings, but I was by my son's side for 2 1/2 months in rehab and what I heard and saw today did not compute with what I thought to be right. I am frustrated, as I am only "the friend" and this dear man and his family are really being short-changed. I am going to talk with my friend again tomorrow, but medicare is probably going to be sending him on his way soon. I doubt they would approve another stay in a different rehab. I will discuss what you have said with both of them. Maybe they will feel empowered to make some decisions for themselves.

                      Thank you so much once again. You provide such a valuable service, and I really appreciate it.

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                      • #12
                        Ask if he has a spastic or flaccid anal sphincter. Bowel programs need to be designed differently for each of these. Have his family ask the center to provide him with a copy of the booklet "Neurogenic Bowel: What you should know" from the Consortium for Spinal Cord Medicine http://www.pva.org/cgi-bin/pvastore/products.cgi?id=1 (and shame on them if they don't know about it, or can't provide him with one). It is criminal how so many stroke/joint replacement rehab centers take SCI patients when they are often clueless about SCI rehab.

                        If the nurses are not real SCI rehab nurses (and it doesn't sound like they are) and don't know how to help him, PM me and I will try to give you some help in advising him.

                        (KLD)
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                        Comment


                        • #13
                          All I can say is THANK-GOD FOR THE GREAT NURSES HERE. For offering your time and expertise to so many. You are all very selfless with your time and demonstrate commitment to your field. It is admirable as many others do not seem willing to extend their knowledge. I feel so badly for this man and I hope you find the answers your friend needs.

                          I agree that those doing SCI care should be trained in that field as it is a disservice to their patients otherwise. I used to supervise a respite center for children with disabilities and supervised nurse student practicums and I can tell you that the general programs give little instruction for students dealing with people with SCI. I was amazed at what the students in 3rd and 4th yr. didn't know. I sounds to me like your friends father is not recieving optimum treatment and that the staff lack some very basic knowledge.

                          Tanya

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                          • #14
                            Forgot something important. Credit goes to you for helping your friend get the information she needs to get better care for her Dad. You are a good friend and there should be more like you.

                            Tanya

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                            • #15
                              Question for SCI nurse (KLD)

                              KLD, I just finished talking to my friend. Her father is back at the rehab hospital. Apparently he now has diabetes, which seems to have been brought on after they started giving him Decadron. (sp?) His doctor said that it was being given to reduce the swelling in his spinal cord and to help with spinal shock. I don't remember hearing about this drug before now. Is it a drug that is usually given to SCI patients or just to patients with SCI due to tumors?

                              As always, I so appreciate your time and expertise. Many, many thanks!
                              Last edited by LFC; 01-20-2006, 10:08 PM.

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