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My Brother's Condition (UPDATED 6/23)

DCL1964DDCL1964 Posts: 11
My brother, Allan was diagnosed with herniated discs in his neck (c-4,c-5,c-6)in 2007. He had all the classic symptoms: numbness in left hand etc. He had an operation in January 2008 to have metal plates inserted in his neck. The neurosurgeon told us it would take a year before he would see any improvement since his stenosis was so bad.
Allan's gotten no better since then and has also gotten the following symptoms:
1-skin very sensitive when wearing a shirt (he says it feels like someone is pressing on his chest)
2-tightness across this chest (has very little relief from this. Some nights he wakes up and it's gone but if he moves it comes back)
3-stiffening up after riding in a car for more than an hour (it takes him two days to recover from this)
4-tingling in his arms (more in his left than right)
5-problems using his hands (buttoning shirts, tying his shoes, etc.)
6-irregular sleep patterns (can't sleep much at night, wakes up incredibly stiff. Sas it's not as bad when he sleeps during the day)
Allan has also been diagnosed with pulmonary hypertension and sclerodoma. He pretty much has laid in bed since April 2007 and only goes out to keep Doctor's appointments. He's lost some muscle mass in his upper body (which I attribute to laying around all day doing nothing.

Has anybody run across or know somebody with these symptoms? He's seen a neurologist who diagnosed ALS but some of the symptoms don't fit.

Any ideas?


  • If he has only seen one doctor I would say find another one. Because these symptoms tend not to be physical the doctor has to rely on the patient to relate the info. There are some tests that can be done like an EMG to document nerve changes but even these are not necessarily accurate.

    A few questions for you. How did he get the herniations? What is his age and physcial condition when this started? What has he done since the surgery ie PT, pain management? What do the docs say about the surgery outcome since it seems like alot of his problems were not resolved?

    One of the biggest problems you need to deal with is his mental condition. If he has been on the couch for 3 years it is going to take alot to get him moving. A good neurologist should be treating him mentally as well as physically. Or referring him to a psychiatrist who treats people in chronic pain.

    Keep in mind that doctors are people and can make mistakes or be guided by their prejudices. It often takes several doctors to find the right one for you. A neurologist is the best place to start. Good Luck and keep posting. We help each other.

  • He's had an EMG & Lumbar Puncture done. He's 55 and before all this he was in fair health. He is an incredible hypochondriac and drama queen. We just feel all the Doctors we've talked to haven't listened to ALL his symptoms. We've seen 2 neurologists, a neurosurgeon, an ALS doctor. Either someone is missing something or he has ALS.
  • What did the surgeon think of the results of the surgery? Did they do any follow-up MRI or CT to see if everything is in place? It is not uncommon to have screws and even plates move. Also did he fuse well? All of these things could be responsible for his continued symptoms. Does he continue to have the same symptoms post-op as pre-op?

    There is always the chance that he has ALS. But no matter what he needs to get his head together so he can deal with his medical condition. People often exaggerate their pain to get attention or to have an excuse not to participate in life.

    Two things you need to do to start. First is find out if the hardware is in place and if the fusion worked. This should really be a follow-up with the surgeon. The second thing is to find another neurologist. Don't be shy about asking the receptionist if the doctor is good at dealing with patients with chronic pain. A good office will be honest with you. If you are in NY I would recommend my neurologist who is extremely thorough.

    No matter where his pain is coming from he needs treatment. That includes a definate correct diagnosis of all problems, proper medication and physical therapy.

    He is lucky that he has you to look out for him. I'm sure it is not easy to deal with but what you are doing is so very important. At some point a little tough love may be in order but make sure the info you have is correct first.

  • Neurosurgeon said the MRIs looked good (his words). My brother had most of the symptoms pre-surgery. He came home from the hospital on a Thursday feeling great. On Sunday he was sitting in a La-z-boy recliner and he didn't lock the legs and the chair jolted him. He woke up Monday morning feeling like he never had the surgery. The Neurosurgeon told us he would have to be in a high speed car accident to do any damage to the surgery. The MRI mentioned above was done about 1 month after the surgery. All the other doctors we've shown the MRIs to all say it looks good. After a year of dealing with this neurosurgeon, my brother got fed up and finally decided to get a second opinion. The neurosurgeon told him it sounds like a good idea. According to him nothing he did caused this. None of the other doctors have pointed out anything he did wrong.
  • The chair could have caused some other problems. ALso sometimes the pain isn't resolved by the surgery. THere may be something else completely. That soon after surgery he would still be under the effects of meds they put inside the opening so it's odd that he felt anything at all.

    I knw you have seen other neuros but don't give up just yet. I would write out a history as completely as you can. Make it a time line of doctors, pains, treatments, etc. A doctor is more likely to listen to you if you are organized. Get all the mris and test results together again in an organized manner. If you don't have the surgery report and test reports and films contact the doctors. YOu are entitled to all records.

    Did the surgeon ever say whether the vertebra fused? THis would be on an x-ray several months post-op. THis is very important and you havent mentioned it yet.

    Now you need to find some new doctors. If you won't go back to that surgeon find another. Explain that he is post-op but still in pain and never got confirmation that the surgery was a success. Doctors don't like to comment on each other's work so be careful how you phrase your questions. You need to forget the past and move forward. THere is no time for the blame game.

    I would also find a new neurologist. I think you will find that going in armed with precise info will get you more respect and better answers. Also not sure if I mentioned it but he needs to keep a detailed pain log. Date, time, where on the body, type of feeling (ache, tingle, elec jolt), how long it lasted, what he did to relieve it and what he was doing when it happened. If you are good with spreadsheets it's a good way to organize info. If not get a notebook. Something might stand out to you and your brother when you look back over a week.

    Since you haven;t mentioned it I guess he has had no PT. THis is a huge problem. Of course his muscles are a mess. A good place to start that won't cause any problem is short walks. He needs to take several short walks each day. Each day increase the distance. Around the living room is a good place to start. Then around the house and then get outside. It can't hurt and it will do wonders.

  • He's got copies of all his MRIs and has made copies for each of his doctors. He's did PT in December of 2008. He was scheduled for 2 sessions a week for 6 weeks. He enjoyed it the first two weeks then started complaining about how stiff he was and he started missing appointments. He didn't complete all of the PT and I think they got tired of him cancelling appointments at the last minute. At times he's real gung-ho to do things, but mostly he depends on other people (mostly me) to do everything for him. This has led to some major arguments between us since I'm doing everything and his 30 yr old daughter does nothing for him. You said he should be grateful to have me. He doesn't see it that way. If his daughter does his laundry once for him then "she's helping as best she can". I think she could take him to the doctors every once in a while, or pick up his groceries every now and then but according to him she has a life of her own.
  • Sounds silly but you are dealing with a serious situation. You and your brother are too young to give up on your lives. He is not living life and his problems are disrupting yours.

    I know you don't want to hear this but his daughter is right. She has a life and it should not be taking care of her father because he refuses to take care of himself. Same goes for you. Unfortunately he's on your couch which makes it harder for you.

    He needs some ultimatums. He needs to get to either his GP or a shrink to get some antidepressants. He needs to get off that couch at least twice a day and take a walk. Then he will be ready to find out what is going on. If he won't do this then kick him out.

    If you continue to allow him to do nothing you are only hurting him and yourself. This won't be easy to do and you have to expect some setbacks. Who do you have to support you? His daughter needs to be on-board with you but you also need immediate support. You might want to see if you can get a social worker involved. If he hasn't worked in three years is he on disability? Often there are services available that would be able to help you.

    There are answers out there. They aren't easy to find and they won't come without some pain. But they are there.
  • He's on disability. He's 55, I'm 46. I'm not saying his daughter isn't entitled to a life, I just think if he has 4 doctors appointments in a 6 month period, I shouldn't be the only one taking him. This made me quit my last job back in 2007 because of all the crap I was getting because I took 5 days off in the year to help my brother. This was also a company I worked 16 YEARS for. I'm in financal straits because of the year and a half I took off to help him because nobody else could or would. Everytime I tell him he needs to move around more he ignors me.
  • I'm sorry to hear you're the only caregiver for your brother. He's blessed to have you. I called Government Home care and asked them to come in and assess me. They have a Physiotherapist and a Nurse and Social worker come in and see what things I needed to get better. I also called the people who deliver Meals on Wheels and found a cleaning service provided by them half price for disabled and seniors. I have someone to come in and help with housework every 2 weeks.

    Does your brother have a walker of cane to help him get out for exercise? I found that helped me get out and walk more. Wishing you and your brother the best. Take care. CHarry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • He uses a cane only when walking outside. In the house he doesn't use anything. He has no stamina from laying in a bed since June 2007. The only time he goes out is to the doctors. He walks up and down stairs to go to the kitchen. Other than that he lays around all day watching TV, listening to music or playing with his computer.
  • Perhaps going with him and talking with the PM Dr. may help if he would benefit from Physiotherapy or aquatherapy may help. My PM Dr. told me it's important to get out for a walk everyday also even for a few minutes. I did this on Tuesday and walked too far and ended up with leg cramps so best to take short walks. Even up the driveway and back just to get some fresh air.

    I hope you can find community help from Home care if you wanted to look them up and see what they can offer you with support. I hope he can find some relief soon. Going for aquatherapy has helped me a lot. My best. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Sounds to me like you need to give him some ultimatums. If you can't do that try being sneaky. Make things less available. If he can do stairs when he is hungry he can do more. Get him out to the stores a little. Another idea is to mysteriously have the internet go out to get him away from the computer.

    Bottom line is he needs to do something to help himself. And you need to make some changes so you can get your life back.
  • The only person my brother would ever listen to was our late father. Our Dad said jump, we would jump. My brother doesn't listen to anything I tell him. He's told some of his friends when they call on the phone that I'm an assh--e for rying to make him do things. He doesn't appreciate anything I do for him.
  • Howdy DCL, sorry to hear you are going through all this pretty much on your own. I have a sister who isn't much different than what I am seeing of your brother. The advice (tough love) I have seen seems right on the money! It is kind of in line of "put up or shut up." The main reason he is being a lump around the house? YOU'RE letting him, and HE knows it. I further agree, the internet should go bye-bye, maybe the TV, and make him cook his own meals! It sounds like he is mobile enough to get around the house - without the aid of his cane! He can do some for himself.

    Also too, to be fair (for him?) If indeed he "is depressed", then yeah, some of his pain will be exasperated. So he hurts, doesn't move, gets internally bummed, hurts more? Just guessing here a little bit, and playing devils advocate a tiny bit.

    His basically calling you names to visitors, that right there, I would have booted him out. My sister is not welcome in my house for a lot of reasons. Your brother might need a shot of "reality." Sorry if I am harsh, just going on what I read in this thread. Good luck with your brother!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Here's an update. My brother's pulmonologist isn't buying into the ALS diagnosis. He prescribed him a bigger dose of Prednizone to see if his nerves are inflammed. He changed his prescription from 5mg to 60mg for just one week. A week later and my brother is feeling somewhat better. He isn't sleeping during the day anymore. He's getting a full and better night's sleep. He still has the tightness across his chest and the tingling and numbness in his hands but he says he feels better. The doc prescribed a second week and is forwarding this information to his neurologists. Maybe things will start to look up.
  • I am so happy to hear that he is making some progress. Keep in mind that he may have some setbacks and don't get discouraged. But this is wonderful news!!

    Is he taking any neuro drugs like neurontin? Maybe what he is calling tightness is actually nerve upset from his surgery.
  • He's not taking any neuro drugs. I honestly think that the reason he really hasn't been "properly" diagnosed is that we're not saying something "the right way." Last night he started complaing about how he is getting worse and worse everyday when on Wednesday he told me how good he was feeling. He bought some contraption to put on top of the toilet to raise him up. The thing must weigh 1 pound and he left it in the middle of the hallway saying it was too heavy for him. Then he complains about moving a suitcase and how when he feels better he tries to do too much. I told him if he got his lazy ass out of bed and moved around alittle more during the day he might actually start getting some stamina back. All that did was start an argument between us. I'm tired of being told by him that I don't care and that I don't understand what he's going through. This is the kind of thing I'm getting sick and tired of. I work a 12 hour day and I have to come home to this lazy good for nothing and catch crap. I've gone to the CVS twice this week to get his prescriptions and today I'm going to pick up his groceries. I don't see his useless daughter doing any of this and she's normally home by 4pm everyday and I usually get in between 7pm and 8pm. I guess I'm not allowed to be tired.
  • DCL its not uncommon for spine patients to have good days and bad. And the over doing it on the good days is a common problem. But I think you are right about him not being properly diagnosed.

    You really need to get him to a new doctor to get a complete workup. I tend to be cynical but there are so many doctors out there who will do anything to keep patients coming back to them. A sign of a great doctor is when they refer you to another specialist because they can help you more. Nothing worse than the ones who want to keep seeing you because they can bill your insurance.

    I would look for a neurologist in a large medical center. Most hospitals have affiliated groups and these docs are not as likely to play the insurance game. Another thought is to see about getting PT to come to the house. That way he doesnt have an excuse not to go out and the therapist may be able to do some evaluation as well.

    I like a neurologist because if he does have other conditions like you mentioned they would be able to assess these as well.

    As far as his daughter - she probably is happy to assume you don't need help. So assign her things to do. Tell her you need her to pick up the meds. Tell her you need her to do the shopping and give her the list. If you don't ask for help you can only blame yourself. Then I would keep a list of what you asked for and if she did it or gave you an excuse. That way you can go back and say "look I only asked xx number of times and you only did it xx number of times"

    My relationship with my MIL and sister in law was similar but I was on the other side. For the first few years of my marriage I offered to do things all the time and was turned down and honestly made to feel inferior. My husband saw it and said to stop asking. I did for the most part. I still offered alot especially when she was in the hospital and got the same response. At the end it came out that my SIL thought we didn't do enough. We had a bit of a fight about that but I am sure in her mind we still didn't do anything to help.

    What I'm trying to say is that if you don't ask you can't blame her. If she keeps coming up with lame excuses then you have to call her out on it. And make sure you give her enough time and some flexibility in helping. If you need meds picked up give her a few days notice so she can make her own arrangements.

    I hope this helps some. I think taking care of siblings is probably the worst because you are equals.
  • After trying an increased doseage of Prednizone and it having some effect on him, Allan's doctors are reconsidering their ALS diagnosis. Maybe someone will dig deeper and finally solve this before I do
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