Asking for help for my sister
 

Good morning,

I haven't posted in NeuroTalk in 7 years. I have Thoracic Outlet Syndrome and spent years in pain. I'm better. This is not about me but my sister. She has had MS for approximately 25 years. She also has bulging and herniated discs in her lower spine.

She is in constant pain and cries all the time. She is so unhappy and our family feels helpless. She has been told due to the MS, they cannot operate on discs. I don't want to say I don't believe this but, really? Is this true? Has anyone else experienced something like this? We want to get her to the right hospital/surgeon because her quality of life is horrible. She cannot participate in any family functions (even though we make sure she can access easily)

Any help would be greatly appreciated. I love her dearly and it kills me to see her in so much pain and feeling no hope.

Thank you

Do you have a MRI report or know the details about her back/disks, what levels of the spine, how many are affected..
The report should have the specifics. The terminology in the report can be helpful..it may also indicate lesions & MS related information..
If lesions are in the same area of the disk issues, maybe that is the specific reasoning..

Our Spinal forum might be the place to post/read about about specific spine issues, sometimes surgery does not stop the pain unless nerves are being directly affected..is there severe stenosis or DDD also?
How severe is her MS if the spine/disks were not involved?

I also thought of SCS, for pain relief if meds are not working, or in addition to meds..
Has she had any PT sessions to see if that might help?

Members can share more, but I found this-
[There are two main types of pain in multiple sclerosis: nerve pain (neuropathic pain) which is caused by damage to the nerves in the brain and spinal cord. This includes altered sensations such as pins and needles, numbness, crawling or burning feelings.]

[About two thirds of people with MS report pain as symptom of their disease. The most common types of pain experience by people with MS are headache, back pain, extremity pain, and muscle spasms. Because the pain comes from the nerves, common pain medicines like aspirin have little or no effect; however, other medications may be effective.] 2 Early MS Symptoms (Pain), Warning Signs, Treatment & Diagnosis

Thank you! She is going to her neorologist next week and asking for new MRI's. I'm not sure how long it has been since she had them done. She has been difficult to help because she always says that she has been told it can't be done and there is no discussion.

Just a suggestion for the MRI. Make sure they do it "with contrast". That means they inject the vein with some dye that will highlight the areas of concern in her back and if there are any problems there.

I hope they can find the culprit of her pain and offer her some solutions that will help her to enjoy life again. Pain is exhausting and can make you feel so helpless.

Hello, very sorry to hear about your sister and unfortunately I know her pain all too well. I have MS and muscle spasms from that actually broke the a vertebra in my lower back and caused a both bulging and herniated disk, since then spasms have also caused additional bulging disks in my thoracic spine level and my neck. And like your sister surgery wasn’t/isn’t a corrective action any doctor will take with me. I “lived” with pain killers for almost 10 years the entire time I was often driven to thoughts of suicide from the pain alone at least twice a week and over the years even made a few attempts. I did physical therapy which I won’t say it didn’t help, because it sort of did at least until the muscles built up enough to begin tearing apart my body again at which point I was dismissed from PT.

Eventually through numerous medications, 8 different pills taken at all different times of the day, my pain was finally under control enough for me to function “some” and my suicidal thoughts became far less frequent though I still suffered from a huge amount of bad days. The end of last year beginning of this year I got a baclofen pump put in, suffered quite a bit and questioned my sanity in opting for it for the next couple of months but I have to say it’s been the best decision of my life so far. I can move, my bad days are far and few between and I’m no longer waiting for my husband to leave for work so I can break down and sob.

Whether or not that will be a possibility for your sister is difficult to say, but it truly isn’t that unusual from my experience for doctors to not want to mess with the disks too much when one has MS especially over pain. My case was a risk/reward that had doctors fleeing from the thought of surgery despite a broken back and smooshed disk. I could still walk with assistance and there was a risk as always that they could remove my ability to walk, and since it was caused by spasms there was an increased chance of causing greater harm to my back and mobility by compromising the area from surgery.

Now I’m not sure exactly what caused the bulging and herniated disks in your sister’s case or exactly where they are located (mine is L3 L4 T2 and C1) but first and foremost posture is a good starting point, don’t curl up from the pain it will make it worse, throughout the day and before bed make sure you lie flat on your back with your knees raised or get a zero gravity chair, it is no lie to say that my own zero gravity chair sometimes kept me from crossing the line and saying goodbye to the pain permanently.

The more stress you can allievate from your back the better you will feel at least while it’s being relieved. And get in touch with a pain management doctor! A reputable one, someone who will listen and try to arrange a medication schedule that will at least provide some assistance with the pain. A good pain management doctor will generally start off a bit slow on the meds, and you might find yourself changing them all around many times over till you find a combo you’re satisfied with, and they also might recommend going for a pain pump like mine, but first they’ll work with oral medications, possibly some injections, and can even recommend PT and things like TENS units (love mine still).

I’ll keep your sister in my thoughts and prayers and please let her know she’s not alone in her pain. But truly pain management is where she really needs to be right now to at least gain a little bit of comfort. It’ll still be a long journey, realistically, I wish there was a magic bullet but there simply isn’t. Though with the MS diagnosis already I would definitely make sure the pain management doctor skips the narcotics and goes for gabapentin it seems to work the best for us.

Yes, I agree. The only problem is she is in so much pain she can barely move. We have suggested taking her to ER because it gets so bad she can barely get up to go to the bathroom. She has fallen numerous times and cannot get up by herself. I live about 7 minutes away and my son who is 26 has gone over in the middle of the night for her. Sometimes it is so difficult the have to call EMS because he cannot get her off of the floor.

Thank you so much! We believe the disc issue was from a car accident. Unfortunately, she is extremely overweight which puts so much strain on her body. No talking to her about that. We've tried. We are starting to look for doctors in Philly, New York or Boston. I had the same neurologist she has and as much as he's very nice, I feel like NOTHING positive has been done for her. I'm glad you have gotten some relief.

Thanks again,

Linda

Sounds like you’re in the New England area, which is a great place for medical treatments. And since it was from a car accident, most likely, you might see about an inpatient pain management program. The way many of them work is they’ll take images and do an initial review of all your concerns and then begin a full treatment of medication regulation, physical therapy, counseling, assistive aids if needed and even a home check to suggest aids for around the house to make living as comfortable as possible. They also offer family counseling so everyone knows how to deal with what’s going on, like when to coddle and when to scold. It’s not a nursing home, though you do stay at the facility for the length of the program, so they can monitor how you react to the medications, get them scheduled properly, see how you manage with the PT and nutrition (which is another part of it). They see your sleep patterns, your appetite, activity levels all of which helps them to see what it is you personally require throughout the good and bad days.

Normally it is done for stroke patients or patients that have been in critical accidents before they are discharged from the hospital, but perhaps your nuerologist can see about getting her in, even if he might have to wait for her to fall again for EMS to pick her up and bring her to the hospital, which could be the case especially for insurance purposes. I don’t know how your sister will feel about it, it does sound like currently she is in a defeatist mindset unfortunately. And though counseling was recommended for me many times, I always rejected it on the premise that talking about my pain wasn’t going to stop my pain, so I don’t even know if something like that might help her or just make her more resistent to assistance.

Though it does sound like she is in desperate need of a reason to try to change her current situation. Does she have any current hobbies? Any kind of interest in handicrafts of some sort? Pets maybe? Even a simple goldfish bowl gives her a reason to fight through the pain some to give it a few shakes of flakes a day. Jigsaw puzzles, balsa wood villages to paint, crocheting hats for preemies at the local hospital, baking dog treats for the animal shelter, even volunteering at the shelter to sit in with the kittens and pet them, no lifting, no standing for long periods, just holding a kitty in your lap for a bit a of time each week.

Really anything to give a sense of accomplishment, something that might be a little bit tiring or difficult at times but not “impossible” can go along way in changing ones perspective from why bother just leave me to my misery to one of wow look what I did, I helped, I achieved, what else can I do! Maybe even something as simple as learning to read a foreign language if she’s an avid reader, you don’t have to know how to pronounce the words or carry on a conversation in French to read and enjoy Cinderella in the original language, rather like Latin that has become a dead language but is still read by many.

Thank you! We are in NJ so have many options. My mother and my other sister and I are trying to find out as much as we can. She is completely argumentative with my mother and my other sister so I'll probably be the one suggesting things. We want to gather as much information before we brooch the subject with her. There are times she's crying saying she wants to go to the hospital, an hour later she wants to wait. I know she used to like to crochet and my 15 year old daughter does as well. But, my sister smokes in her house and it smells horrible. My daughter is not thrilled with that. She doesn't smoke when she's there but it still is everywhere. Unfortunately she can barely leave her house and when she does its for a doctors appointment. We are at our witts end.

Thank you! I am going to discuss all of this information with my mother and other sister.

I’ll admit to smoking in my house as well and yeah the smell can get a bit overwhelming or rather it did... a simple bowl of vinegar in the rooms we smoke in takes the smell right out of the air. It’s a bad habit and I do need to quit again, but at least a few bowls of vinegar placed around the house keeps me with company. Oh and if she crafts for charity, and you’re willing to assist her, take a plastic container and fill it with one part borax to one part peroxide and about 4 parts water... toss what she’s made in there before putting it in the car, let it soak at least an hour and then toss the whole load in the washer and it’ll be clean and fresh for anyone to use.

Oh good heavens! Smoking is such a dangerous thing if you're disabled. Especially if you live alone. I know it's like talking to a brick wall trying to get them to stop because I've tried before, too, but they have to realize how risky it is. Not to mention the worry it causes other family members (like you and me!)

Dangerous and toxic, to be a smoker regardless of your Mobility. Though I think before trying to change the smoking first, see what can be done for the pain. Without addressing her current quality of life I sincerely doubt she’ll be receptive to quitting and it’s likely to cause a shut down in communication completely. For years while I was in massive amounts of pain the doctors would point out that my smoking was going to kill me and I would respond every time with “Really? How many more do I need to smoke a day to speed things up then?” It was one part my being a smart *** and one part truly wishful thinking hat maybe if I could smoke a carton a day things would really speed up.

Trust me, no smoker thinks it’s actually healthy for them, we all know it’s a terrible vice, and when our family, friends and even perfect strangers lecture us about it all that really goes through our minds is how much longer are you gonna harp because we really WANT a cigarette right now. Many a times I’ve been driven to smoke almost 2 packs in a day because of folks telling how I need to quit (I normally smoke half a pack if that a day). Not advocating smoking, and not proud to be a smoker, but facing a perceived lifetime of agony in which nothing can be done for you is not the time that most smoker will even consider putting down their bic’s for good.

I understand. Unfortunately, I am a smoker too but a "closet smoker". I NEVER smoke in front of anyone but my fiance. I feel guilty to have started. I started during Hurricane Sandy. Just had finally kicked the husband out, no power for two weeks, still had to go to work and getting death threats. I know there is no excuse but that is my explanation. My youngest is the only one who doesn't know and I want to keep it that way until I quit.

My sister would never be receptive to quiting. We have tried. She smokes too much and drinks canadian club and seltzer everynight. She may say she has two, but what size?

Anyway. She is seeing her doctor tomorrow and I am going to email some of all of your input to hopefully put a match under ther butt. Love her dearly but she is, sorry to say, a pain in the butt to talk to!!

Lol yeah sisters can certainly be that way, my sister and I can be polite in society but both of us are happiest keeping half the country between us and a convenient lack of memory for phone numbers :D. Another approach you might try with her is the tough love way... put her in charge of her own health. She says the doctors won’t operate (which yeah they probably won’t) so basically demand from her what’s next? PT? Cortisone shots? Implant pump or tens? Medication? Make her look it up, make her own choices and tell her your kids aren’t going to go over there and pick her up off the floor if she’s just going to wallow in her self pity. If she’s anything like my sister I’m sure it could be one heck of a row (she did not like the tough love approach to her husband cheating on her)

Basically need to get her to realize there are options, but you’re not gonna find them just bemoaning that one avenue that was closed. And doctors do care about their patients, but with all the specialists out there, they rarely have access to all the treatment options even more so if the patient doesn’t pretty much demand from their doctors the “so what now? And where do I go from here.”

Thanks Starz,

My mother took her to her neurologist today. I personally think he's an idiot. He was my doctor for my TOS and I don't think I received the best care.

I provided her with information I received here and my mother provided her with some information she received. The doctor was completely non-receptive. He gave her a prescription for pain med for 3 months and then, I guess, they are done. So time is an issue. He used to drive me crazy beacuse when you were in his office for a consultation he had to type everything into his computer! How do you pay attention? He wants her to go to a pain management doctor. I have been to two. One did not give me enough to get out of bed in the morning. The other distributed like candy.

She told my mother she couldn't talk about it today. She cried in the office and cried going home. My sister is sixty and my mom is 82. I have to find someone for her to go to soon or she will end up in ER in major pain and withdrawl. I know we have a few months but it's hard to get appointments.

Oh gosh! I'm so sorry you have to go through this with your sister. It sounds as though she is not coping well, both from pain and the emotional effects of being in pain, having MS, and feeling hopeless.

I agree about getting a MRI to see what is going on. Seeking a good neurosurgeon is a good idea. There are some in the Pittsburg area. My friends husband just had cervical surgery done there. I'll try to find out his surgeons name. They are on vacation right now, but I will try. Additionally, I have an MS friend that lives by me. She fell and broke her hip and had it replaced and a few months later had spinal surgery to her cervical spine, if I remember correctly. I don't think it was her lumbar spine or thoracic. So, I think it can be done. It's just a matter of finding a good, qualified, and confident surgeon to do the surgery or to get a recommendation.

Also, I agree about the PT to see if that helps her. If she is unable to leave the house, check with her insurance about getting PT through a home health agency. They will come to the home and work with her.

Some people have had luck with accupuncture and other alternative/complementary medicine options. Explore those as well and see if you sister feels these are good options for her. Obviously, present things in a way where she feels she is making the decision on her own.

Good luck and let us know how she is doing.

Regrettably there are quacks in all medical fields... I call our local hospital one of two names when asked about it, Camden Malpractice Center, or Southeast end of Life Services “if you aren’t dead yet we can fix that!”. Truly not a single doctor there, not just the ER doctors, are competent enough to distribute a bandaid let alone put one on a patient. But they’re number one in care for the county! Of course they’re the only ones in the county, if a witch doctor opened a hospital in the back of a rusty van they’d definitely beat out our current hospital for patient care, cleanliness and lack of neglectful death and secondary infections. Sorry ran of topic there....

But when looking for a pain management doctor it is an important thing to realize that very few doctors are created equally, so always go in for a consult first, and ask what your diagnosis is as they know it, will they require more testing, what treatment options are available, risks and benefits of them and how do they view your prognosis, are you going to spend the rest your life popping pills like skittles or are they going to try a multidisciplinary approach? And how long until you should expect to see results from the treatment plan?

If the doctor’s response is only to tell you about the various medications available to treat you, narcotics, muscle relaxants and anti-depressants, thank them for their time and find someone else. If they tell you they can get you fixed up and running again in a month, again find someone else.

You’re looking for a doctor who doesn’t offer the “wonder drug combination”, who doesn’t make unrealistic promises either. That’s not to say medication is bad and simply because they offer a medication program that you should ditch them, but they should be offering more than popping a few dozen pills a day. It might be cortisone shots, PT, tens, hot/cold therapy, massage, even speaking with a therapist or a nutritionist.

And pay attention to what they ask you as a patient as well, they should not only ask what your pain level is, but about your emotional state as well, your social health too. They should ask about activities you can and can’t do, what seems to make the pain worse, what seems to make it better, and what all you have already tried. And a really good pain management doctor short of you going after getting every test in the book, will likely ask for further testing. The MRI isn’t the only test on the books, blood tests to show cortisol levels in the blood can show how much pain one is truly in and if it is reaching a point of causing additional health concerns, nerve conduction tests (EMG) are equally important, and they may also want to test your blood sugar levels as well or in lieu of the cortisol testing. But it still comes down to they’re probably going to want more tests as you go through treatment.

If the doctor seems distracted, inattentive, or really just not listening to you and is unwilling to explain the whys and wherefores of their treatment find another doctor... really that applies to all doctors even a family practitioner. Never forget the doctor is working for YOU! They may be the ones who went to medical school, but they weren’t learning on YOUR body to get through YOUR life. And while it’s PC to say “we’re all equal” We most certainly are not, by any stretch of the imagination, not even identical twins are perfectly equal in life. It is your right as the employer of the doctor to know what is best for you and your life and how willing are they to adapt to what you require instead of the other 80% of their patients.

I mean you wouldn’t hire someone to put carpet down on your floors if they only carried one type because that’s what 80% of their clients want or are satisfied with right? Beige Berber carpet in every room of the house without a single variance in color or texture. Or an architect with only one floor plan who refuses even the smallest change to his design. So why take it from your doctor? A patient should feel engaged by their doctor, that you both are working towards a common goal, and that both understand the other and yes you are well within your rights as a patient to disagree with your doctor and tell them as much.

I left a doctor after telling her I was rejected from PT since they made me worse and she came back with the suggestion of yoga?! If a trained medical professional broke me further why would I put myself in the hands of a 6 week certificate course yogi?! Asked as much, she said for the stretching exercises, she goes to her local Y all the time for yoga classes... again PT was focused on stretching and I tore 3 ligaments while doing it, so why yoga? Because it’s healthy.... time for a new doctor... she’s also the doctor who told me to watch my sodium intake even though my sodium levels were on the low side of normal, after passing out several times and staring longingly at a salt block for deers at the local store, I went back to eating salt.

Any news on your sister yet?