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Spinal fusion recovery (Page 8)

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May 23rd, 2010
Experienced User
Hey Quaver,
Oh i here you on the friend issue, people mean well, but they really don;t have any idea about what they are talking about. In one part i am lucky in that asthma can not be treated by Natural remidies, do to the fact that i have been on meds since i was a child for my asthma. I have a friend that i love dearly since high school, i am always there for her, but when i need support its all this, u need to loose weight, advice from someone who has it all, pieces me off. Most people that i surround my self with, understand that there is no turning back. When i first became sick, i saw no one, cut my self off, as i don;t want to here your theories, u have no idea about what we are going thru. I too have the best husband in the world, who has literally stopped his socializing with his friends, because he feels guilty and i told him i want him to go out with his friends, but when he does i was feeling a bit jealous and i told my self don;t be so selfish, but to this day 16 years later, he says your who i want to be with, and i miss you and feel bad if your not there. I did go fishing with him in the mountains, he would make me a lovely camp and i would read or listen to music, hike when i could.
To those friends, i would say, i thank you for the advice, but what i am dealing with the doctors don;t understand, so there fore, natural remedies are not an option, being in pain is not an option, and if your hubby supports you and sees your suffering than a good friend, will respect that. Until you walk a mile in my shoes and suffer, u cannot judge me, and advice to an injured person is like salt in a wound. do they really think that you have not thought of the options?? I mean pain is pain and if you have no quality oflife, and you are suffering every moment, you have the right to have releif. So next gathering, say i thank you for your concern, but my issues are off the table of discussion, lets enjoy an evening together, try and stay positive and talk about other things when your out, not your health, take pains meds just before the party. If they still nag ya, get rid of them, if they can;t support you and learn from your suffering, say see ya.
I see a mental health therapist and talk about my issues with her, its a release and gives the hubby a break.. i hope you have a better sunday girl
hugs wanda
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replied May 24th, 2010
Experienced User
Hey Wanda and everyone else,

Wanda your post said amongst the kindest, most understanding, most helpful things to me that I have ever heard. What sort of mental health therapist do you see? I saw a counsellor for 6 weeks but it was very expensive and she said I needed to carry on for another 2 years... Sadly my finances wouldn't run to that. The NHS here in UK paid for 6 weeks only. I am not poor but after paying for a physiotherapist and osteopathy.... Do you have osteopathy Wanda? Does anyone else? I am having doubts about it at the moment. I have been to the same guy for about 9 years and he has become a friend in many ways. He has really helped me in the past but now I am beginning to wonder if enough is enough or just that my condition has altered. I have scoliosis of the thoracic spine and he manipulates it. My rheumatologist says this is bad, my physiotherapist says she isn't sure Ahhhh!! What does anyone else think.

Anyway Wanda thanks again and I hope I can help you as much one day. Hugs to Wanda.Greetings to everyone else.
Quaver
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replied May 24th, 2010
Experienced User
Morning Quaver,
No i don;t use osteopathy i am not a regular size person and therefore don't feel comfortable with that type of treatment. If it was working for you you would feel some relief by now right? I am not sure that with scoliosis that you should have any kind of manipulations. Your right as we get older and being ill, it does change the chemistry of the body and with so many conditions, u may do your self a favor and stop for a bit and see how you feel. I have been seeing female psychiatrist for over 20 years, i had a very traumatic experience and needed to work out stuff, i am blessed that psychiatrists are covered here in canada how ever physiologists are not. It takes far more courage to go than not to, and it really helps.
i must run i will chat later
Cheers wanda
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replied May 24th, 2010
Experienced User
Wanda,

Thanks for your advice. I think I will cancel my next appointment with the osteopathist.It is worth giving it a break and seeing how I get on. I definitely don't rate chiropractors. I saw one for years too scared that I would get worse if I stopped going. That man was a health hazard. My osteopath is a great guy and has helped both me and my husband in the past but as you say our bodies change as we get older.
You say you are "not a regular size person" but all I can say is you have a warm heart. Your body shape or size is not important.

Hugs Quaver
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replied June 1st, 2010
Experienced User
Hey Wanda and everyone,

I would like to know how many others on this forum use Butrans patches? I have always found them a bit itchy and that they left red marks, but recently they seem to be even itchier and the skin is left almost raw. Is there a similar product available? What pain relief does anybody else use?

Also Wanda I cancelled the osteopath so will wait and see. Thanks for the advice.

Cheers, Quaver
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replied June 1st, 2010
Experienced User
Hey Wanda and everyone,

I would like to know how many others on this forum use Butrans patches? I have always found them a bit itchy and that they left red marks, but recently they seem to be even itchier and the skin is left almost raw. Is there a similar product available? What pain relief does anybody else use?

Also Wanda I cancelled the osteopath so will wait and see. Thanks for the advice.

Cheers, Quaver
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replied June 2nd, 2010
Experienced User
Quaver, hey there sorry it took me so long to get back to you. No we have never used the Butrans patches, but i did have a problem with getting the patch to stick to my hubby, so we shaved the spot and cleaned it with alchol and ended up having to put a band-aid on it as they would not stick, try changing the areas more. Hubby use a product called tridural 200mg and day long acting medication and when its really bad oxycets and most of the time codeine 30's, now he doesn't use these all the time, he rates his pain and what he has to do for the day and decides. Good for you canceling the osteopath, have you ever had acupuncture or laser therapy, it is a good thing to try girl, if u can, find and Asian therapist or one that will give you references for chronic pain, and someone very experienced. i will get the name of the laser.
U are probably developing a sensitivity to the glue on the patch! have a good night wanda
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replied June 2nd, 2010
Experienced User
Wanda, thanks again. I emailed my pain specialist and he told me to take an antihistamine for now and next time I apply the patches to put a low strength hydrocortisone cream on the site 2 hours before applying the patch so I will give it a whirl. I think oxycets must be similar to the oxynorm I take. Unfortunately I cannot take any anti inflammatory drugs. I will try acupuncture soon. How are you at the moment? Are you feeling any better? I hope you have the warm sunny weather we have today. It was cold and raining yesterday.
Cheers, Quaver
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replied June 2nd, 2010
Experienced User
Morning Quaver, its finally sunny to day and they have to spray for wasps out back, so i am stuck in with the doggies until after noon. Well unfortunately i got stung 2 weeks ago and developed slight anaflactis shock, swollen arm, some Flem and hoarseness in the throat, and 2 days later i was un able to see out of my right eye turns out i have a bad case of floaters, which if i am not careful can turn into detached retina, so i was really shocked and scared. I don't want to loose my sight. My pancreas is killing me, however my lungs are stable. Find a really experience acupuncturist ok, nice old asian guy, not the ones that come from physiotherapy as one wrong needle and you can be worse, make sure not to take too much pain meds as they need to find your sore spots, and they can leave tiny needles in those sore spots and it helps with the knots in your back. My hubby was so sore he woke up and asked for a "Helga's house of pain rub" we call it. I find the sore spots and gently work them out and then he can sleep, i aggressively do the shoulders with my fore arms, thats the helga part!!
I hope you get sun shine there as well.
I hope you feel better, i am here for you
tty soon Wanda
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replied June 3rd, 2010
Experienced User
Wanda,

I am so sorry about the pain in your pancreas and the possible detatched retina sounds terrifying! You must see a really good optician. Make sure that all your care for your husband doesn't make you neglect your own health. I am here for you in any way I can. We pain sufferers must stick together Smile Incidentally where is everyone else on this forum? Have I frightened them off do you think? I can see by looking back that you have been posting on this forum for some time whilst others come and go. My back is OK today. We have another lovely day here and I will go out for a walk later. I use a stick as I have had some very bad falls. My balance is poor so if I trip I tend to go down. I also find the stick invaluable on slopes and when I get tired. It always gets you a seat on public transport too! Smile The age of chivalry might be dead in the UK but in fact both men and women will give up their seats. Is it the same in Canada and USA? I will sign off now. Have a good day/evening or wherever your time is at the moment. Here it is lunch time.
Waves of pain relief to everyone! Quaver
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replied June 3rd, 2010
Experienced User
Quaver, morning sweetie,
yeah people come and go, on this site, often when they feel better and then we don't always hear their outcome. which i know people are busy, but its good to put the positive out there as well! Yeah my back is giving me greif now as well and i am so tired of the suffering. Sick and tired of rich guys thinking they are so much better, when they have no idea what they are doing. they came to calgary and developed took all the low in come housing and disabled housing, and developed most into high end condos. Its just been brutal, we have over 3000 people homeless in Calgary, which is triple what it was before the boom in 2007. We used to have people that would give up their seat on the bus and we have handicap seating at the front of the bus, for disabled and people should move, but i think chivalry went out with the computer 20 years ago. We have a service called ACCESS its for disabled people only, we pay the same rate for the bus, but we get door to door service. it takes longer to get there, but there are very strict rules to apply and u must be respectful and kind, as they deal with all forms of disabled people, they use buses and cabs. Its a system i am so grateful for as the bus is too rough for me now.
Well i am very stressed over my hubby's work, idiots and i don;t know what we are going to do after this job. I feel so helpless and a burden on my hubby. I think we will down size again, never thought i would be 46 and living in a basement suite, such as life.. try and have a good day ttyou soon wanda
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replied June 3rd, 2010
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Wanda, it sounds as though Access is far better than anything in the UK. We have to put up with public transport or drive ourselves. Locally we have a neighbourhood association which gives people lifts to hospital appointments etc. I don't know if this is so in other places. I have only considered myself to be disabled for a couple of years.
I hear what you're saying about the homeless we have a problem with this in the UK but it is worst in London.
I am sorry for your pain and can only say that I'm here for you and send a big hug across the miles. Sorry must dash. Quaver
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Users who thank Quaver for this post: wickedwanda 

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replied June 3rd, 2010
Experienced User
Quaver wrote:
Wanda, it sounds as though Access is far better than anything in the UK. We have to put up with public transport or drive ourselves. Locally we have a neighbourhood association which gives people lifts to hospital appointments etc. I don't know if this is so in other places. I have only considered myself to be disabled for a couple of years.
I hear what you're saying about the homeless we have a problem with this in the UK but it is worst in London.
I am sorry for your pain and can only say that I'm here for you and send a big hug across the miles. Sorry must dash. Quaver


Thanks for listening that is all we can do, and sometimes that is the greatest gift we can give luvcomp
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replied June 10th, 2010
Experienced User
Wanda,
I have just been for a day out with some friends and walked a long way for me and I am exhausted! Luckily for me my friends don't mind walking at old lady pace SmileI am doing quite well at the moment. I am not consulting any medics and I'm doing what feels right. I am concentrating on what I have and not on what I have not. I am so sorry that you don't like your basement suite and I really hope that your husband finds more work. There is nothing worse than being in pain all the time except being in pain all the time AND worried about money. I feel for you. Try not to get too stressed it will make the pain worse. Try not to worry about what might be round the corner, your husband might walk straight into another job after this one. I am here for you and if I can help with moral support I will do so. Do you take anything to help you sleep? I find a night of really sound sleep makes me feel much more optimistic. I expect like me you keep waking up because of your pain. Keep your chin up. Hugs, Quaver
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replied June 15th, 2010
Chronic Pain 19 years After Anterior/ Posterior Spinal Fusion
Hi there-

19 years ago I had an anterior/posterior spinal fusion. I am fused from my hips to above my shoulder blades. I have only 6 vertebra that are not fused. I have constant pain every day, especially when the weather is humid...if the humidity is over 65% I am in agony. I have spinal stenosis from my arthritis and the bone growth is growing so rapidly that almost every nerve in my back is being pushed on and I have mostly pain everywhere but I have nasty flare ups where I can feel shooting pain inside my body and it is just unbearable! I started seeing a pain management doctor about a year ago and have been getting Marcaine/ Kenalog injections every three weeks, sometimes I only get relief for five days and then it's back to square one. I have been diagnosed with Chronic Myofasial Pain. I keep a pain journal and have only had 3 pain free days this year. I am 39 years old and sometimes getting out of bed to make coffee is an ordeal. I live alone and can only bring up one bag of groceries up my steps at a time. It's not a good way to live and very frustrating. Above my fusion I have a lot of wear and tear on my vertebra and a few bulging disks. I feel most days that someone is hitting me with a baseball bat and the sensation never goes away, unless I am asleep. I was reluctant to take any pain killers but now I take Soma when I am home and I take Vicodin all day long....sometime 8 or 9 per day. I work full time and I sit at the computer all day long. By lunchtime I cannot feel anything below my hips...just numbness. I am seeing a neurologist on Wednesday to see if he can do some more advanced trigger point injections that will help me better than what I am receiving now, but I am doubtful. I am on FMLA at work and take almost one day a week off which stinks but when I can't even dress myself or get down my steps for the pain, it's the only thing I can do. Just rest. But that is depressing in itself, just laying around alone does not help and people really do not understand. Do I have to live like this forever? The Vicodin only takes the edge off that's it. I thought it would do more but my pain is deep and persistent. When I take the Vicodin it feels like I am taking Tylenol but I am afraid to take anything stronger as I do not want to get addicted and be a zombie. That is not a satisfying life for me as I am as active as I can be. I get Chiropractic care for the disks that can move and do a massage every week but it's only a temporary fix. I do light exercises at the gym, I stretch everyday and now that it's summer I joined the pool near me and try to swim everyday, if I can drag my but there! If there's anyone out there that has any suggestions, I would love to hear them. I am at the point where I am reduced to tears a few times a week as when I had the surgery I thought I would be all better but since I had bone harvested from my hips, shoulder blades and ribs everything hurts! My surgeon never told me about the side effects that would plague me 2 decades later but I had to have the surgery as my curvature was 80% and my ribs were starting to constrict my lungs. I had no choice in the matter. My e-mail is ***@**** and would love to hear from anyone that is suffering as I am. I just keep praying for myself and everyone out there like me that is suffering from Chronic Pain. God bless and hopefully I will hear from anyone that is in pain like me.
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replied June 16th, 2010
Christianne:

Sorry to hear about your back pain! I've been on a low daily dose of Clonazepam for three years for lumbar disk degeneration with facet joint pain. This medication is non-narcotic and relieves my pain for at least thirty hours with minimal side effects! Check with your doctor to see if you are a candidate - it might help greatly!
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replied June 16th, 2010
Experienced User
Christianne,

As far as I can tell every pain relieving drug, certainly those that work, is addictive. my pain specialist says that I shouldn't worry about addiction as addiction proper is something that you have to steal or beg for money to obtain, whereas he will always give me my pain meds. He also said that there are plenty of places to go if you need to get off the drugs and are having trouble. It sounds to me that your quality of life is so poor at the moment that the most important thing is to relieve your pain. I happen to think that unless you are knocked out or feel like a zombie nothing actually kills severe pain but it can and should be dulled. If your life is as bad as it sounds you desperately need help. I am in the UK so don't know what the views of your pain specialists are but mine says that pain relieving patches like the ones I am on are less addictive than tablets and much better for you. I use Butrans 25 micrograms which keep me reasonably comfortable but can be topped up with oxynorm (oxycodone) if necessary. The beauty of the patches is that they work 24/7 so you don't suffer the peaks and troughs. I personally take an oxynorm at night always as my pain is worse later on and at night. I avoid them in the day unless I really need them. I also take Lyrica (pregabalin) 150 mg twice daily which is for "nerve" pain and I am on citalopram which is related to prozac for depression which really helps. It sounds to me as though you are depressed too, being in chronic pain IS depressing. People who tell you not to take tablets have never truly suffered pain. My specialist says not to take tablets if you don't need them but if you do then do so with a clear conscience. He is a top London pain specialist.
I also was under the impression that my back surgery would cure me. It didn't.... I do find it odd that many of those on this forum suffer from pain where bone has been harvested. My sugeon used artificial bone so at least that wasn't a problem and he trained in the States. He is a top London neuro sugeon.
Christianne I am SO sorry for you. I am now 52 and have suffered back pain since I was 40. Before that and at the same time as my back trouble I had severe endometriosis and had a hysterectomy at 45. If I can help you in any way I will do so. For now I will send you a big hug across the miles. I find this forum hugely helpful as I thought I was alone with my pain. Wanda has helped me and I hope I help her. We pain sufferers must stick together.
Hugs, Quaver luvsme
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replied June 16th, 2010
Thank you!
Thank you Dave and Quaver for your thoughts! You have no idea how much I appreciate that you both wrote to me. I saw a Neurosurgeon today and he said that he is going to do some facet point injections for me so I hope that will help. He also talked about some more tablet medication, but right now I want to see if another few rounds of injections will get me through the summer weather. Pennsylvania is VERY humid over the summer months and if the humidity level is over 65% I am in AGONY!!! I keep a pain journal and it never fails: the humidity is intolerable. And Quaver, it interesting that you talk about where bone was harvested! Sometimes that is where I feel my pain the most. Many a Doctor have glossed over that! Just keep me in your prayers and thanks for the hug! I got it!
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replied June 16th, 2010
Quaver-

I forgot to let you know about my pain patches. I use Lidoderm (Lidocaine.) Not sure if they have the in the UK, but you might want to ask your Doctor. They help me to dull the pain without tablets so for that I am grateful.

How are you feeling today?

You friend across the Atlantic-
Christianne
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replied June 17th, 2010
Experienced User
Christianne,

Thank you for your kind words! Today for me is quite a good one. Considering the way my back felt when I went to bed last night I am amazed! I too have had facet injections. The first lot about 12 years ago really helped so I was more than happy to have them again in December 2007.... That lot combined with an epidural left me in absolute agony and in my view (though of course the doctor denied it) contributed to my need for my sugery in 2008. I have never been near that doctor since. When I was still in so much pain a year ago, so following my sugery, the lovely man who did my surgery suggested facet injections. I was very reluctant but eventually was persuaded because the surgeon agreed to do them himself. I was in so much agony afterwards I could hardly put one step in front of the other. Eventually it was concluded that I am allergic to the medium in which the medication is injected so never again!! Perhaps I shouldn't have told you this but it seems unlikely that you would be the same.
The weather here is a perfect English summer's day about 72 degrees farenheit. I feel for you with the humidity. I hate it and it gives me migraines which on top of everything else is just the end!
I do hope the injections help you and once again send a hug.

Your friend across the Atlantic-
Quaver
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