Excruiciating back pain

I have posted a few messages and recieved numerous responses in the past. Both my mom and I really appreciate all the helpful information provided.

You may want to ask her oncologist to recommend a pain management specialist.

Hi, you have given excellent detailed info. I agree with the other poster that a pain management clinic can help. Maybe your mom's medical center has one or has ties to one. I go to one myself for severe arthritis and stenosis in the spine and a bulging disk. They don't give me opiates as it is not any known cancer, but do prescribe opiates for extremely severe cases and for cancer. I can tell you my experience. First, because pain mgmt is their specialty, the drs do take pain very seriously. Next, they are hooked into their own little network of surgeons, physical therapists, etc. They initially gave me an 8-week series of physical therapy for my lumbar/sciatica area/problem. The physical therapist concentrated on exercises to help relieve my pain and would not let me do movements that cause pain, if that makes sense to you. It has helped somewhat but I still have trouble getting comfortable enough to sleep and sometimes wake up in the night screaming from pain - my cat comes running in. However as a lifelong insomniac, I asked my psychiatrist to prescribe something; she gives me lunesta, seroquel and clonipin. The pain drs give me the maximum of neurontin, which is supposed to calm the nerves, although frankly it doesn't seem to help me! I am in severe pain ALL the time so I can relate to your mom. However, my stretching exercises continue and I am waiting for clearance from my insurance to get more physical therapy for my neck and shoulders too. I wanted to say that when I was getting my physical therapy in the exercise room, there were people even in wheelchairs being treated there, people with VERY severe pain; I guess it's all relative. I have seen patients in the waiting room crying out in pain. In my case they want to do a series of epidural steroid procedures, but the first time I showed up in the OR they cancelled because I reported being on antibiotics for an infected tooth. With the spinal column being involved they said I could get a blod infection and die from scepticemia, which my mother actually died from. So if your mom goes this route she cannot have a secondary infection - the surgeons take that seriously. My infection has resolved so I am waiting for the opportunity to schedule my epidurals though am nervous of the steroids' side effects. But if this helps my pain, it will be worth it. Also: has your mom tried alternatives like massage and acupuncture? I've never been able to afford much acupuncture myself, but if she can, it really could help. I work as a gardener and this aggravates my pain though it builds my muscles up, so between jobs or during my lunch break, and before and after work, I ice up my back with some ice packs I always carry with me in the cooler. That helps a bit. I cannot stress though how much stretching can help too, even though it hurts at the time. I am so bad off I can't even do the yoga I used to do! So it is a hard road. Also: what kind of mattress does your mom have? My own mattress itself causes me pain. I wish I could buy one of the newer kinds advertised on tv. Also: take your mom to a back store. There are a few in my area and of course since they specialize in the back, they have all sorts of pillows, bolsters, chairs, balls, mattresses and more. Again this boils down to finances, but check it out - maybe you can get better prices online. I don't know what you've tried already so I'm trying to think of everything I know. My arthritis became severe when I was only in my early thirties and twenty years later I'm still struggling with this, with my condition just getting worse. So I am still searching for answers just like you. I also used to go to chiropracters. My best experience with them was actually a practitioner who gave me deep and I mean deep tissue massage. It helped me so much, I wish I still had the person available. It gave me enough relief to where I could exercise again - I had a severe pinched nerve in my cervical spine to where I was partially paralyzed and numb in my writing hand and could not use a computer keyboard (I worked in software) so had to take a month off work. (unfortunately I lay by the pool during my recovery so when I returned to work everyone thought I'd gone to Hawaii instead of suffering to the max :)! ) Anyway, these are some ideas. Do find out if your mom can get some sleep meds. I do not recommend ambien or lunesta alone because they are weak, bs drugs. She could use something stronger as with me I take seroquel off-label. It's aN anti-psychotic but don't let that scare you off. I have no psychosis, just general depression, but the seroquel does make me feel better in addition to putting me to sleep! If only I would stay asleep - I have untreated overactive bladder too! So many ailments. Hope this all helps: remember it's a long road/process to deal with the pain. Write back!!!

Thanks for the suggestions and detailed information. I will talk to her onc about pain management.

Hi again, A quick update for you in case it helps: During my errands today I visited the back store near me, hoping to buy the 65 cm exercise ball my physical therapist said I should buy. Their prices are high for everything I looked at. But they had some great stuff. I was looking for a driving pad to help with my sciatica; they have those. They also have a great self-massaging "cane", so called because it has a hook shape - with nobs on it to work out the spasms and kinks not only in the back but pretty much any area of the body, according to the manual. It was $38, so I didn't buy it right away but it's in my mind. I thought your mother might find it useful because she has chest pain too and probably other pain as well. Of course I had to lie down on the Tempurpedic mattress they have and it was so comfortable I almost fell asleep right then and there. But the price for one is prohibitive for me. I think they range from about $3,000 for a twin up to about $10,000 for a California king. I'm not sure what a queen costs. They do have payment plans for excellent credit histories; apparently they cracked down after the credit crisis last year. I don't know nor want to know your family's financial status; I'm just letting you know what they told me. I do have a limited income myself, so I can't spend too much on items to help my pain. I explained this to the salespeople, and they were very understanding. One guy went online and saw that Target also carries exercise balls and driving pads and more, which I hadn't thought to consider, seeing as how I spent a bunch of money on household stuff there just last month - I try not to go into stores because I might impulse buy. So I'm going to check out Target tomorrow if I can, to see their prices. I have, while trying to sleep, also lain on a king sized pillow. That has provided some relief, but not enough. Really, I would go back to my original advice to visit a pain clinic ASAP if there's one in your area, and start there. Since getting an appt can take time your mother might not have the patience or will for, perhaps her oncologist could help pave the way by doing and urgent referral or something. It sounds very urgent to me. I mention this because I tried to get an appt with my pain dr this week and was told he's booked up for two weeks, then they are all going to work half-days due to a new computer system being installed. What the computer has to do with the dr himself is beyond me, but that's my situation. Arghhh ... I can't seem to get an urgent appt myself. But surely you mother could, given her serious condition. Well, I'm sorry she's in so much pain. I guess if the cancer has metastized to the spine, as you implied, it could be a factor in her extreme pain: my friend who is dying of metastatic melanoma has a large growth at the neck. They give her morphine or something but she has to wear a neck brace all the time, except when sleeping. Because she's staying in the hospital until she dies, of course she has a hospital bed, and of course those beds allow various sitting and lying positions, to where the person should be able to find a comfortable spot. Does your mother have a hospital bed at home yet? Maybe her insurance would allow her to get one. My friend has Medicare and she had a hospital bed at home before giving up her apartment. So there are various treatment modalities that could potentially help your mom, but she might need more pain meds to really manage the situation - who knows. It sounds like that stent is just awful! Well good luck! Keep us updated and if I find any more info I'll let you know too.

Mom's radiation Onc. finally called me when I took mom to do blood lab work this morning. I went downstairs immediately to meet with him in person. He is suggesting that mom has mets to spine 95%, but the tiny spots (not hot for PET) should not have caused her so much pain. If it did, then our choices will be: 1) block the nerve; 2) get cyber knife radiation at Stanford; 3) chemo. After he realized that mom has been going through chemo therapy, he suggested to get another PET scan done in October to see the difference. If the esophageal tumor shrinks and no growth in her spine, then he will ask her gastro doctor to try to take out the stent and put a G tube for nutrition. If the pain continues, then we could do either of the three above. If the tumor in her spine grows, she will get cyber knife. If her esophageal tumor grows, then he will ask her gastro doctor take out the stent and do brachytherapy to shirnk it. If the pain continues with all above, she will see the pain clinic for more help. Right now he is up her pain meds from Fentanyl patch from 100mcg to 150mcg. We will wait for the PET result before take any further actions.

 

On 9/24/2009 May from CA wrote:

Mom's radiation Onc. finally called me when I took mom to do blood lab work this morning. I went downstairs immediately to meet with him in person. He is suggesting that mom has mets to spine 95%, but the tiny spots (not hot for PET) should not have caused her so much pain. If it did, then our choices will be: 1) block the nerve; 2) get cyber knife radiation at Stanford; 3) chemo. After he realized that mom has been going through chemo therapy, he suggested to get another PET scan done in October to see the difference. If the esophageal tumor shrinks and no growth in her spine, then he will ask her gastro doctor to try to take out the stent and put a G tube for nutrition. If the pain continues, then we could do either of the three above. If the tumor in her spine grows, she will get cyber knife. If her esophageal tumor grows, then he will ask her gastro doctor take out the stent and do brachytherapy to shirnk it. If the pain continues with all above, she will see the pain clinic for more help. Right now he is up her pain meds from Fentanyl patch from 100mcg to 150mcg. We will wait for the PET result before take any further actions.

My husband also tried the Fentanyl patches (working his way up to 100mcg before nausea caused them to try something else.)  I do agree the pain clinic is the way to go.  The Fentanyl is a slow continual acting pain med and as such my husband also needed some short term acting medicine as well.  We tried numerous combinations until they could make him comfortable.  I wish you the best and admire that you're being her advocate.  Without someone actively monitoring their care, things do sometimes get missed...