I am not sure I have seen this topic, but I really have been struggling with making a decision to have something done to help DH with his severe back pain, but knowing it will probably cause a cognitive decline that he may or may not bounce back from. I feel like I stand still on these types of decisions for fear of making his condition worse. I have avoided surgery at all cost, but he is in so much pain... how do I decide between pain and brain?
This is a dilemma. We are also dealing with back pain, but surgery is not on the horizon.
Can this surgery be done with local anesthesia? Can you talk with the Anesthesiologist? Some anesthesia is better than others for people with demensia.
To complicate matters your husband probably has less ability to deal with pain. This is the case for my wife.
And can you be more specific about the possible operation? My wife just went to a neurosurgeon's office this week for back pain. Fortunately the x-ray didn't show anything that needed fixing (one vertebrae is rotated but in a direction that doesn't cause problems). The physicians assistant said they would not do surgery just for pain because it usually doesn't help. Back surgery too often makes the matters worse.
You husband might have a problem that is easily fixable by surgery, I know people who have been greatly helped by this surgery.
Keep in mind that the pain are possibly making his dementia symptoms worse. So it isn't simply a matter of pain vs brain.
Are the back specialists familiar with dementia and the risk of surgery. If not I would definitely get a second opinion. And be sure that other methods, such as weekly shots of an anti-inflammatory drug, aren't an option. I am thinking of the recent advice I received for my wife's condition.
And this is one of the hardest parts of being a caregiver for a spouse. We have to make the decision for them. If anything goes wrong we have the guilt.
As much as I would hate for my wife to have any surgery, I could not have her in chronic pain since she suffers so much from it.
Sherizeee, I too am considering an operation for my husband and have been struggling with the same issues. In June 2013 he fell and broke his knee cap and I had no other choice but to have it surgically repaired so he could be ambulatory. I agonized over the anesthesia and recovery. I spoke with the orthopedic surgeon, the anesthesiologist, the nurse anestethist, consulted a dementia specialist about what to expect after surgery regarding his cognition. And insisted after surgery they did NOT administer morphine for pain. Fortunately, everyone was cooperative and we had a good r esult....he came out of the anesthesia quickly with no side effects. Unfortunately the surgical repair was ruined because someone allowed him to bend his knee thus destroying the repair. So now, I have to decide whether or not to subject him to another round of surgery and I have all the same anxieties you have.
But it definitely helps to discuss your concerns with all involved so they can discuss options/possibilities with you. I agree with paulc, try to get a second opinion.
sometimes its not only the surgical aspects and anesthesia, but the recovery time as well we must consider. with dementia, getting them to comply with therapy and do's and donts can be trying to say the least. I agree that pain is a threshold none of us want our spouses to have. I would consult and see if maybe a bout of cortisone injections may help for the time being. I guess we are the only ones suited to know if your spouses can handle a surgical procedure and how they will tolerate recouperation time.
Paulc- Unfortuently, DH has had a long history of what I call "Self body abuse". He had had muiliple back, neck fusion, both shoulders and knee, surgerys. The MRI from 2011 showed a nerve that is exposed wtih no sheathing or whatever they call that over it, along with a long list of other issues. Spinal stenois, disk issues and so forth along with scoliosis. he recently had a steroid injection, which he has had in the past that had helped, but this time it did not help, they told me he needed to see a spines pecialist sowe have an appointment on Monday. My plan is to see if there is a proceedure that does not require full anesthesia like you mentioned, and then regroup from there. Even that will be a challange as I work full time, and he attends a Day Care during the day. So if he can not go to the day center after any surgery for a certain period of time that becomes another set of problems not to mention the pain medication effects as well.
I will certainly try to screen the doctor for all option and experience with this type of situation, just feel trapped , becasue I know in my heart his pain has reached a not able to cope with the pain level, level. It is just hard to as you said deal with the guilt if things slide. But then again, I feel guily for letting him be in pain as well. :( No good answer. Thank you for your response. :)
sherizeee you may could consider calling in hospice if you haven't already. I know its hard to fathom but if the pain becomes unbearable and surgery and recovery not feasible, they can give your spouse morphine or another narcotic to ease his pain. I know this is probably not want you want to hear but it would be an option if things get worse.
This is a hard one---@ two years my husband needed emergency hernia surgery----you could tell he was in great pain and he would have died without it, and I was told it would have been a pretty painful death. It was a difficult decision, but we proceeded because the surgeon felt it was a straightforward surgery. He actually only spent one night in the hospital and "bounced back" well. He is now in a nursing home and wheelchair, and if that happened again, I would make a different decision.
Sherizeee, Another idea: when you see the spine specialist, do ask about referral to a pain specialist (unless this is who did the steroid injection - not clear on that). They are a mixed bag, but physicians usually know the reputable ones. Before proceeding with a surgical with anesthesia procedure, it would be worthwhile to investigate what other pain management options there are. It may be, too, that the spine specialist would have some less invasive pain control options to offer. As per divvi, while you are there ask for a script for hospice evaluation for pain management too. What a stressful situation this is for you to manage in addition to everything else.
Sherizeee, some times we have to choose between bad options. You have been working on different options, so if it does come to surgery it will be because you have tried the other options. I agree that just leaving him in pain isn't an option. If I had to choose between some cognitive loss or pain for my wife I would probably go with cognitive loss. The cognitive loss will happen eventually anyway and they will suffer more from the pain than the cognitive loss. Still, not an easy decision.
You still have at least one specialist to examine your husband, so you still do not know all of your options.
Update- So we went to the back specialist who said that DH's back is beyond hope. It would require a mulitlevel fusion involving 5 disk levels, which would be a 6 hour under full anesthetic, and the recovery would be extremely, if not impossibly hard. So this is clearly not an option. The other two options were to try a liboderm patch that would essensially numb is back to hopefully calm the pain, and if that did not work , there is a proceedure to burn the nerve endings up and down along either side of his spine. The second option requires that he have 6 weeks of Physical Therapy first, and some other shots in his back one side at time after phyisical Therapy. So I started with the patch for which the insurance company denied use.They wanted him to take Gabaipentin first. After me trying to expalin the difference between a systemic medication and a topical medication in regards to an Alzheimers and frontal lobe dementia patient and many, many calls back and forth they finnally approved the patch. The patch worked like a charm the first 2 days... until they started the physical therapy... which they started to try to get ahead ofthe 6 week requirement if the patch did not or it stopped working. It is frustrating because now is pain is up higher than before ( and he has a high pain tolorance in the first place) and they say he has to have the phisycal therapy in order to move to the next proceedure. This is craziness. Sorry for the ranting.
Sherizee, what stage is your DH in?My DH underwent 6 1/2 hr.anesthesa for back surgery when he was entering stage 6. He had 5 discs fused,bled very badly.He was really out of his head in hospital, they ahd to keep one on one with him for first week.He was in a total of 10 days there and rehab 4 days. I insisted he come home from rehab, it really confused him . Once home he seemed back to his pre-op AZ level in a few weeks.. It did stop the severe pain and he was fine until he fainted 2 yrs later,fell flat on his back, fractured 2 ribs and who know. what to his back, he could not walk or feed himself after that,DR. said he is final stage. They used the Lidoderm patches on hs ribs and back for sveral weeks.The ins.co.. refused payment,They were over 300. a box.But they did help. He had used them several years ago,the ins. paid then. They are not much cheaper they Canada.He is really almost pain free now except for when he first gets up. So from our outlook, the surgery was very helpful. Oh, he had gone the PT and shots route.Did not do any good.
yhouniey- Wow very similar back history! The patches are still $300 for a month supply but now they have upped the prescription to 3 patches at a time. :( I have kind of stayed away from the stage classification so I am not really sure what he is at, everybody seems so different we are seven years in now was considered Early On Set( diagnosed at 64 but symptoms many years before) goes to day care full time requires 24 hour supervision. . The last surgery he had really set him back, and didn't regain the ground he lost. I am glad to know it might work.
a friend of mine had the nerve burn like you mentioned and is doing so much better after that procedure. she had it on both sides. worked well and minimal recovery. good luck