anyone feel more burning/numbness when sitting

@brayimee Aimee, the fact that all of this kind of happened all at the same time, out of the blue from no obvious cause is a clear indication (to me) that everything is related to some unique initial problem. The initial problem could be that one or both of you hemangiomas have impacted some nerves. This could have caused a whole host of problems to develop from what I have read. Perhaps even caused SRS to develop. Can SRS be clearly seen on your X-ray, i.e. have you been confirmed to have it? In any case, as I said before, I think the next step is to find the right health professional. I hear you about $$$ issues. What kind of insurance do you have and what limitations do they place on the network of doctors you can choose from? I would be happy to help you by researching to find the right doctor in your area, as close to your town as possible (you mentioned where you live in an earlier post). Getting you help from Mayo may be what you will need to do also.

Aimee, can you read the private message I sent to you? It's the button (symbol of an envelope) at the very top right corner of this page next to where your picture is. Please read that and reply. After you reply I will send you a follow-up message. Thank-you.

This needs to be resolved! You need to get past the point of all of this desperation. It's making you miserable, undermining your ability to just have a good life with your family, and undermining your health further. It needs to stop. There is an answer to this, and you may very well already be on top of it as it very well could be directly related to the hemangiomas on your spinal column. But whatever it is, there need to be involvement of helpful, intelligent, curious and open-minded medical practitioners. I am hoping you are able to get past this period of tears and desperation, you need to get past this phase and on the a more constructive phase. My best to you, Hank

@jesfactsmon SRS has not been diagnosed. I don't think anyone in my are or Michigan is very familiar with it. I mentioned it to my doctor and he said if I had it, it takes time to resolve, but there is no treatment. Which isn't true, but he isn't familiar with it so he left it alone. I see my PT and chiropractor on Monday so I certainly will address it. There are special test to determine. A dynamic ultrasound and hooking maneuver, but again doctors do not request or do the tests if they are not familiar with it. This whole issues is strange. Why only left side? ( besides the sciatic feeling in my right glute) I just don't understand.
Aimee x
I got your private message. I'll tell my insurance from there. 🙂

@johnbishop good morning!! Those are very scary symptoms. I do see some symptoms in there I have but, my use is minimal and typically if I take it, it's 1/2 the dose. I don't use it at bedtime nor do I use it daily.
I am wondering if something is going on that is nerve related. And the strange thing, my pain and odd sensation is on the left side. I'm just stumped, but whatever it is, it has very much affected my colon and kidney/ureter/bladder.
Thank you so much for reaching out and caring. It never hurts for me to take a look at all possibilities.
Aimee x

@brayimee Aimee, in some of the reading I did about hemangiomas some people definitely present with pains on just one side of the body so this is not unheard of. I will try to find again where I read that and let you know. Hank

@jesfactsmon
I am trying to stay strong, but my PMR doctor flushed my thought to drive to WV to see about slipping rib, he flushed my idea in hemangiomas, and when I said I keep getting nerve pain in my right glute, he gave me a psychiatrist referral. 🙁 My cardiologists flushed my idea that I constantly feel my abdominal aorta and I wondered if it was vascular and told me to try the antidepressants. When I told my GI I was have bowel issues, he gave me a new antidepressant and set me up with a GI psychologist.
I feel defeated. I feel that my health care system is letting me down. I'll try the antidepressant fir a few weeks so I can say, this isn't psychosomatic. And you know, if it is, I will fully admit I was wrong.
Aimee 🙁 xx

@brayimee Hi Aimee, I was wondering where things were at for you since we last communicated. It's obvious your doctors are treating you as a "headcase" i.e. your issues are emotion based and not real. They are prescribing antidepressants and that is it. Assuming what you are going through is VERY real and you know that, then they are not serving you at all.

My question to you is, are you putting any energy toward the Mayo Clinic idea? If you just start by doing SOMETHING in that direction it will get the momentum started. You have described in vivid detail what you are going through with all of your symptoms. If you can just put a little tiny but of energy into heading in that direction (Mayo) and then keep that ball rolling a little at a time while also dealing with everything else, you might be surprised where that takes you. I don't know what else to tell you except put it into your mind what you want to happen. Start to visualize that outcome and keep putting your mind towards it.

You have something that is beyond the experience and scope of the doctors you are seeing. To the degree they can still help you, like your chiropractor for example and what he does for you, keep seeing them, but you need to start yourself heading in a new direction. Have you continued getting yourself organized, by putting all of your documentation into a folder as you had mentioned, and are you starting to keep a journal of your daily experiences and your symptoms? You should start (or continue) this practice as it can be helpful, both to you and any future practitioners who tries to help you. You need to stay firmly in control of your own case and what direction you are heading in.

By the way, have you watched that 2 hour PBS documentary about the Mayo Clinic that I sent you the link to? I am not going to knock any other institution you may be considering, but Mayo is like no other medical center in the world, and if anybody can help you it's them. @johnbishop sent you some great links to their sites. That is the best I can give you by way of advice at this point. Keep me and everyone else here posted on where you are at Aimee. You know my heart is with you.

Best, Hank

@jesfactsmon
To be honest, I was hopeful about things and then I slide back and stopped pursuing anything except the slipping rib digging and WV.
I will begin logging again today and I start my elivil this evening, which is the antidepressant, but also helps with pain. My GI said it helps with bowel too.
I know I can't up, my husband begs me to not give up, but when you feel let down by the doctors you feel will fix you, it kind of stomped on my heart. More disappointing news.
I started the documentary, but have not fonished it just yet. I will try and do that today.
I need prayer, I need answers, I need help 🙁

Aimee x

Aimee I am so sorry that you find yourself in this health mess. But try to keep going for your children. Ask your husband and parents to watch the Mayo documentary as well. Like I said, make a plan, focus on the goal and don't give up. I know that sounds easy to say but it's what you are faced with. As far as Mayo goes, if you decide to go that route, do something toward the goal. Perhaps call them or contact them through their website. Getting started, overcoming inertia, is often the hardest step. I wish I had more to give you, but this is your personal fight, and hopefully with your family on board you and firmly behind you, will get through it all. ❤ Best to you, Hank

@brayimee Ok. It ain't easy, I know that. I feel your despair. You can feel defeated, but you can not be defeated! Pick up the phone and call Mayo Clinic. Get the ball rolling, watch their videos on pain by Dr. Sletten. I can tell you from my experience, you need appropriate out of network insurance to get coverage at Mayo. I was denied once but, I was already diagnosed, you aren't. A Dr. or multiple Dr. referrals are best for your acceptance. You can also self refer and apply online today. Mayo was wonderful at calling back promptly. I was eventually accepted to their pain rehab program and in order to not pay 50K out of pocket, switched my insurance the first of the year to be covered. This all takes time. Begin soon if you are serious.
My best wishes and encouragement,
Rachel

@brayimee Hi, Aimee, don't allow any doc to tell you all of your health issues are "In your head." That is utter nonsense, and it defeats you. As everyone as said here, it is time for a new course of action. You hold your head high, and go to a new doc, Mayo clinic, probably. You are too sick not to. There are good doctors out there. They do exist. Keep searching for them. Love, Lori Renee