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Post by pringleman on Nov 20, 2013 21:19:04 GMT -6
Hi Von,
I notice from your comments and your blog that you notice an effect in your symptoms from different foods. Is it mainly diary - cheese and milk - or do the good things that you have small amounts of affect you also - the red wine, dark chocolate and coffee?
I have felt for a while that wine has a negative affect but am not yet convinced. After signing up for an operation yesterday I got together with some friends and had a Operation Feast (with lots of cheese - deep fried Brie - yum) and drank the best part of a bottle of good red and today have no noticeable negatives.
Hope things have improved for you since your last post. No regrowth sounds good to me. Do you feel heat? That was one of the strangest things I had prior to my first operation - I could not tell hot from cold. In the shower it was really odd; could only feel wet and I did not like it. Contrary to what they say that the defect before the op will carry on, it didn't and I got the sensation back straight after the operation.
Due to the aggressive growth of my tumour they are talking about radiation to follow my next op. Comments on this site suggest that can cause lots of problems but if it stops them growing it could be worth it. Can't keep having operations.
Cheers,
Pringeman
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Post by von on Jan 15, 2014 13:13:48 GMT -6
Sorry I've been away so long, I've read your posts and I thank you so much. I will be back to reply in length. Sorry I'm tied up with MRIs and trying to get some pain relief. So tired most of the time, but I want you guys to know I'm thinking of you. Will reply to posts once I get this health mess under better control. Be back later.
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Post by pringleman on Jan 17, 2014 23:15:38 GMT -6
No worries Von. Been doing the same; trying and uses all your best time. Best wishes.
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Post by von on Jan 30, 2014 14:07:19 GMT -6
I do okay with chocolate and coffee, but limit that to one cup or one square, so I don't eat tons. I'm off the booze because of being on Tramadol. I told my neurologist that these symptoms seems strange, so it might be good to do a full hormonal. He agreed and found my prolactin running high. Went in yesterday for pituitary MRI (brain), looking of a pituitary tumor. I'll let you know when I hear back on anything. Probably will be a couple weeks or more if they need to do more tests. Fun stuff. Haven't heard from surgeon, but neuro said my mri (lumbar and thoracic) looked good to him. There is some atrophy in the cord from radiation. But he said the searing pain is probably good, meaning the nerves are regenerating instead of dying. Said he didn't think the cyst was causing problems, that it looked small now, that he thought it was from the radiation.
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Post by von on Mar 17, 2014 17:42:41 GMT -6
I'm sorry I haven't gotten back soon. Here's what my neurologist and surgeon says.
Tumor is stable. No cyst pressures on the spine. Mind-numbing, stupid pain is from radiation itself. It was not a minimal side effect thing as my oncologist said. I'm in a wheelchair because of it spending most of my time trying not to piss myself. Some atrophy in the cord, but I'm not sure how common it is. Radiation may have saved my life from tumor growth, but I've paid a heavy price. Coming up on 2 years post radiation soon.
My prolactin is high, meaning my dopamine is low. I figure I'm using much of my endorphins for pain control. Started on cabergoline and will see how it changes things. On gabapentin and tramadol. Fairly low dose. It seems like pain meds aren't doing much. Maybe due to low endorphines and low dopamine. Will give it time. If I can get it dealt with, I'll make a post in the pain section, see if it could provide relief for others as well.
On the bright side, my fiance is incredible with my care. It has made the difficulty of day to day better as I can't fully care for myself.
Love you all. Think of you all often.
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Post by von on Jul 31, 2014 17:34:48 GMT -6
I'm still having troubles everyone. I think I'm having adrenal issues. It's something that has to be dealt with differently, so I'm working on that. I'm trying to learn more about it and what all pertains to it. For now, it's been severe fatigue, loss of muscle, heart racing, low bp, fluid issues, blackouts when standing. Cortisol is abnormal, prolactin abnormal. Everything else has been normal. Nerve pain is unpleasant but fatigue is the worst. So part of my adrenal nerve was radiated, I noticed some others with radiation to that area have the same symptoms as I. I didn't think adrenals were affected by nerves, but I'll figure it out and will try to post back later. For now, salt is helping, b vitamins, resting. I still have a lot to learn, so I'm reluctant to say much. I'd gained quite a bit of weight, about 30 lbs after radiation. My diet has not been any more than 1000 calories a day or so, makes me sicker to eat more. I don't eat sugar, regularly, only fruits, veg, protein, nuts, so I realize the weight gain is a symptom of some bigger problem, not a dietary issue.
About the nerve pain. Nerves are healing, the pain is not pleasant. Nerves are no where close to functioning as well as they were pre-radiation. Went through opiates (the patch, vicodin, other stuff) for pain, did not have any luck. I still think there is something with the malfunctioning adrenals (cortisol is off) that has to do with the pain. Trying to work on the adrenals has been better for the pain, than pain relievers. Opiate patch caused my bp to go severely low, labored breathing. Dropped it. Gaba is good with tramadol for nerve pain, but I think the adrenals are causing side effects there. So I can't take it. Talked about SSRIs such as Lyrica or Cymbalta, but swelling is always an issue on those (and weight gain). Don't need added weight when muscles are weak.
On tramadol, 50mg 3x daily. Tramadol is a decent pain reliever, depending on how much pain you have and what type. It does effect your adrenal glands. Do not want to go up on it (or down) until adrenal issue is worked out. Will make more detailed, less all-over-the-place post when I have the science-related information to post.
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Post by pringleman on Aug 12, 2014 4:33:26 GMT -6
Hi Von,
So sorry to hear of your condition. It sounds like each day must be a real struggle. I have been wondering how you were going and took your absence from the site to mean you were doing well. I would love to offer advice but you are my path finder; I am 18 months or so behind.
I have been doing very well but the last week has been pretty hard. Increasing pain and increasing pins and needles. My legs gave way twice today. The burning chest and back of radiation has returned. I was told to expect some radiation affects after 5 months and it is 5 months and 2 days now. Hope I am wrong and it is just tiredness causing me to miss my exercises.
Thinking of you,
PG
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Post by von on Sept 16, 2014 13:12:19 GMT -6
pringleman How are things now? Thinking of you too. The pins and needles are horrid. Though I think I hate the leg weakness worse. Mine buckle too. I'm hoping its better now. ____ I'm coming back with an incomplete report, but I hope to do more later. My adrenal glands are shot. I'm still researching the why it's worse post radiation. I probably have damage to the T10 (adrenal nerve) and it can disrupt adrenal pathways. However, just having radiation and pain is hard on the adrenals. It's probably a combination of issues. Opiates and Tramadol can also cause adrenal issues, but documentation is still sparse there. Treatment for this condition is a nightmare (because there is a lack of doctors able to treat it well), but I am getting help. Starting on Hydrocortisone (natural steroid) to try and get me back up to functioning. (When doc opened spinal column pre-radiation, adrenal issues were much better until they radiated the spine. Since I had no removal of tumor, only biopsy, the assumption has to be the pressure release has something to do with the function. Maybe less pressure somewhere. This is just speculation based on observation though). Symptoms of adrenal insufficiency: fatigue, weakness when standing, low blood pressure, hypoglycemia, aversion to touch, light, pain all over sort of feeling. The disruption of aldosterone will cause salt issues, when my cortisol is low I cannot hold fluids. LOW CORTISOL MAKES NEUROPATHIC PAIN MUCH WORSE. So, if I had fatigue and the symptoms above, I would definitely try to save 150 bucks to get a 4x cortisol test. You can get a blood pressure cuff and see if your bp is resting low. It's low blood volume causing your bp to be less. Bringing the adrenal function up, brings the bp up. I got tired of standing and blacking out. It's a combination of cortisol results and symptoms that can give an idea of how the adrenals are functioning. I know a couple of us here have had this same discussion, nothing makes us feel better but steroids. I remember specifically two others with damage at the t10 level as well who said they had crippling fatigue as well. There is not good documentation (that I've found so far) regarding what exactly that means for us, but it does seem to be common knowledge that damage to the t10 can cause issues. I don't have hard citations on that, will continue to look. Although pubmed has some documents on the matter. (Keyword:cervical adrenal insufficiency for example). So its not only damage to the t10 where adrenal issues show up. If the adrenal insufficiency is mild, you can treat it naturally. Dr. Wilson has a book on adrenal fatigue that covers the natural options for boosting cortisol and adrenal function. If it's severe or bordering addison's disease, you will probably need hydrocortisone or steroid therapy. I'm going to learn a bit more before I make any kind of official post but I'm off for a bit, trying to get my adrenal glands back up to baseline. ____ For those on the fence, maybe slight fatigue and aches and pains. For your adrenal cascade, you need Vitamin C, B5 for stress moderation, and fat for cholesterol production. Cholesterol makes cortisol. I've been using coconut oil for this. Then you need the other vitamins in normal amounts or a good multivitamin. Salt in the morning to help the adrenals and avoiding sugar as much as possible. I end up taking my multivitamin at night as sometimes vitamins seem to excite the nerves and make them more sensitive. So I do it late when I know I'm not up walking much anyway. I'm sorry this post is a bit all over the place. I'm still tired a lot and will be resting. As I get the right levels of adrenal hormones again, I should be up on my feet more.
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Post by von on Jan 8, 2015 11:14:12 GMT -6
Post radiation pain as of current. 40% of body has chronic pain. Legs, feet, thighs, butt, lower back area. Not as much pain in the tumor area itself, unless I bump my spine against something, then I feel it. Foot pain is currently similar to diabetic neuropathy type pain, like fire. Hypersensitive, hurts like hell getting a shoe on with brace.
I was off of tramadol for a while. I tried a variety of other medications and herbal remedies without much luck. Tried tryptophan (to naturally raise serotonin) and tyrosine (to naturally raise dopamine/noradrenaline) to try and get pain relief naturally. Body stayed stressed and cortisol remained out of whack. I believe it's the severity of pain causing the cortisol weakness, I'm using all my reserves to deal with the pain. After exhausting my pain options and having blood work again (which turns out normal), I decided to go back on tramadol in combination with dopamine therapy.
I'm still trying some experimental therapy. I am now thinking it's possible my dopamine has been bottoming out. I've been having symptoms along those lines and dopamine fixes the issue some (super short gate, pulling of the legs (dystonia), movement issues, apathy, lack of focus, inability to enjoy anything), high prolactin. I've combined the dopamine with the tramadol and I am finally getting pain relief again. Using a herbal supplement Mucuna Dopa, but will talk to doc about Levadopa. See the pros and cons. I'm not sure why low dopamine influences pain so directly, still reading a bit about it. But I'm thinking with low dopamine the medications are not effective. I think this could be why I am getting no pain relief no matter what I take, yet some times I seem to be pain free. I seem to get that pain free effect when I take enough of the dopamine supplement with tramadol. Without pain relief my body seemed to be super stressed, high heart rate, high blood sugar, weight gain in absence of high calorie consumption (less than 1200 daily), severe weakness. The med combo above put my numbers back in the normal range. Blood sugar has been down to 108 which is the best in a long while. Will test it further before I make any posts about it. Will check my cortisol levels again to see where my stress levels are on the body.
I am back on my feet for now. I'm still weak some, but I was losing all ability to walk for a bit. The ankles were popping out of joint while standing and rolling badly before starting dopamine. So bad I couldn't stand and walk in the morning. Feeling much better than before, will give it some time. Go through my MRI and see if this therapy holds out or not.
Best wishes, I keep you all in my thoughts daily. Keep fighting.
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Post by pringleman on Jun 30, 2015 6:05:53 GMT -6
Hi Von,
Sorry to hear that you have not had any improvement. I think often of you. Be strong and as you say, Keep Fighting!
Ian
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