anyone feel more burning/numbness when sitting

@brayimee I've been too overwhelmed with work to keep up with the discussions here, but I had to sit still to drink my coffee, so I'm wading through a very long list of messages.

I can't remember for sure who it was that started a journal/log of everything she experienced - maybe it was Rachel @rwinney I keep a sort of diary to note anything having to do with my health issues, and write in it every night - well, sometimes I miss a night. It helps me keep track of when I start or stop a medication, what doctors I saw that day, my pain details - the level of pain, where it hurt, how it felt - and I write about the emotions I feel...

I don't have anything to add to what others have said, except to reinforce their support and concern for you.

Jim

Jump to this post

@brayimee, here is the information on Xanax mentioned by @phoenix0509.

Alprazolam (Oral Route) Side Effects - Mayo Clinic (Xanax is one of the U.S. brand names of this drug).
"Other changes may be more unusual and extreme, such as confusion, worsening of depression, hallucinations (seeing, hearing, or feeling things that are not there), suicidal thoughts, and unusual excitement, nervousness, or irritability.Jul 1, 2020"
-- https://www.mayoclinic.org/drugs-supplements/alprazolam-oral-route/side-effects/drg-20061040

Cardiologist and Cancer Survivor Speaks Out on Dangers of Benzodiazepines, and Her Personal Withdrawal Story: https://www.benzoinfo.com/2016/10/15/an-open-letter-cardiologist-and-cancer-survivor-speaks-out-on-dangers-of-benzodiazepines-and-her-personal-withdrawal-story/

More about Dr. Christy Huff: https://www.benzoinfo.com/christy-huff/

Does any of it sound familiar to you?

Jump to this post

@phoenix0509 Hello there. I don't take the xanax often. sometimes 1/2 a day, but not every day. I started having these symptoms well before my doctor asked me if I would like to try it. So I am not sure that is what is causing the issues. I have been a medication phobic person due to my brothers addiction issues so I get very scared even taking 1/2.
What I feel is happening, is that I am having nerve issues causing muscle spasms or constriction of the urinary tract, digestive tract and lower chest. The sensation is so odd, but I have horrible time passing gas, sometimes urinating and my chest gets very tight, but when everything "releases" I can breath very well and become actually dizzy and light headed from it, my bowels will "talk" sometimes my stomach with do lots of gurgling and I will h ave to urinate. I am so so incredible lost and I don't know what is happening, but my body isn't working as it should and it scares me that it will turn into more complications.

Aimee x

Jump to this post

@johnbishop Many Thanks for doing the research. John, i have watched you crank out the best unbiased sources and deliver it up like a gourmet meal for everyone to devour. You have the gift to tease out the pertinent information and make our jobs that much easier. Many thanks for your time and talents. In appreciation as you welcome new folks to connect. Not sure how you accomplish all that you do but I am thankful for people like you.

Jump to this post

@brayimee I have been reading through all of the posts you have written the last week or so. You keep saying that you think the 2 hemangiomas T1 & T11 might be related to your problems. I did some reading on hemangiomas. Most of them, like over 98-99% of them, are asymptomatic. But a very few of them can be aggressive. From what I am reading it sure sounds to me like these hemangiomas could very likely be your main problem and the root of all of your issues, just like you have been saying. Your doctors have blown you off about this because they think your hemangiomas are benign. They might be wrong. Take a look at what it says here:

Among symptomatic hemangiomas, the most common symptom is pain at the tumor site, usually in the back. If the tumor expands beyond the bony boundaries or causes collapse of a vertebra it will create pressure on the surrounding nerves or spinal cord. This can lead to pain that radiates to the arms or legs, weakness, numbness, or clumsiness of the arms or legs, or compromised bowel and/or bladder control. (from https://www.columbiaspine.org/condition/hemangioma/ )

And this:

Symptomatic vertebral hemangiomas are rare but should be considered as a differential diagnosis. They can present with severe neurological symptoms. When managed appropriately, patients regain full motor and sensory function. Decompression resulted in quick relief of symptoms, which was followed by an extensive rehabilitation program.
(from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5088736/ )

Which means this can be cured!

I think your main problem right now is you are seeing the wrong doctors. I now think that your hemangiomas need to be ruled out as the problem first. Especially if they have not even considered it to this point. Seems very odd they would not have picked up on this.

Hank

Jump to this post

@brayimee Aimee, as I read your symptoms, could you be having panic attacks as part of your problem? Xanax is actually used for panic attacks. Have you checked your mitral valve in your heart to see if it is working right? If it does not open and close right, it can cause panic attacks. I hope I have not added insult to injury here. But I thought maybe this would help you. Lori Renee

Jump to this post

👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍

@johnbishop John I second what @phoenix0509 David expresses here. You deserve a lot of credit for being the de facto official greeter here as well as the man with the all the great "Deep Research". You are always right there with a warm "Welcome!" and I never saw anyone so quick on the draw with an article about this syndrome or a study about that rare illness that someone comes here with. The fact that you do it is just really appreciated. My dad had a plaque on his wall at the office that said, simply "Life is Service". You are the embodiment of that idea John. Many thanks!!! Hank

👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍

Jump to this post

@jesfactsmon I do think they should be considered, however I'm so lost as to what needs to be addressed with myself, doctors make me feel very defeated and that this is caused from anxiety, but pain like this... Is not anxiety, not voiding properly for 5 months, is not anxiety, having quiet bowels for 5 months, is not anxiety, all this left side pain, is not anxiety You get what I mean haha!!
That being said, one of the beginning issues I had, 2nd visit I went in for, was low left rib pain, upper abdominal pain and it radiated to the back. I'm guessing in the area of T9-T11 (T11 hemangioma). I had asked my physician about slipping rib syndrome "SRS" because the pain was burning in my ribs and that pain held for months until PT. It started to get a lot better with her help although, I wasn't diagnoses by anyone to have actually having it. So I rulled it out until 3 days ago. I'm not sure what I have done, but my low, left ribs are burning and I can feel a rib under another. I'm wondering if my rib misalignment/rib flare (addressed by my PT) is tugging on my spine and all this urinary, bowel and nerve pain is from the tugging and the muscles that have swelled along the left side. Maybe this is causing a lot of misfiring nerves?? I feel this is another area to address, but unfortunately, there are only a few thoracic surgeons familiar with it and only a handful of doctors/radiologists know how to test for it, but I can tell you.. Whatever has happened has had me in tears multiple times today and in bed.
So 2 things I suppose that can cause nerve pain and radiating issues. Hemangiomas and Slipped Ribs SRS, but I'm stumped about the SVTs and internal vibrations, unless the internal vibration is the SVT?
This pain has caused anxiety/depression, anyone in this state and no answers would develop this at some point, so I don't doubt that some of my symptoms could be from these, but the pain and system interruptions are real. This is way over sharing, but I'd have to tell doctors. Today I urinated so much in 2 trips, I had to take pain medication because my left abdomen and bladder hurt so bad. Something isn't working properly and my tests have been good. I'm just stumped, but could nerves be causing problems?
I have good news, and bad. My doctor said he'd refer me to Mayo or UofM (he prefers Mayo), but I'm not rich by any means and we still have 3 children at home and 1 in college. I'd have to check with insurance and even so I have to figure out how to pay for it. I know for certain I would want the hemangiomas addressed as well as SRS as a possibility. I'm not sure what else this could be at this point, other than nerves misfiring from something.
I wish I could give you a hug x, you have been more attentive than my specialists 🙂 and I will never be able to thank you enough.
I attached a chiropractor Xray so you can see how misaligned I am in the thoracic, lumbar region. My left is being so compromised, but why?
Aimee xx

Jump to this post

@brayimee I'm not sure what is available for financial assistance but Rochester Mayo Clinic does have a number you can call. Here are a few links that you may find helpful if you would like to check with Rochester Mayo Clinic.

You can find out more about billing and insurance at Mayo Clinic here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare

Charitable Care and Financial Assistance at Mayo Clinic
http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

Rochester, MN Charitable Lodging
-- https://www.experiencerochestermn.com/mayo-clinic/hotels/charitable-lodging/

Rochester Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

I'm hoping you can find some answers soon.

Jump to this post

@jesfactsmon I do think they should be considered, however I'm so lost as to what needs to be addressed with myself, doctors make me feel very defeated and that this is caused from anxiety, but pain like this... Is not anxiety, not voiding properly for 5 months, is not anxiety, having quiet bowels for 5 months, is not anxiety, all this left side pain, is not anxiety You get what I mean haha!!
That being said, one of the beginning issues I had, 2nd visit I went in for, was low left rib pain, upper abdominal pain and it radiated to the back. I'm guessing in the area of T9-T11 (T11 hemangioma). I had asked my physician about slipping rib syndrome "SRS" because the pain was burning in my ribs and that pain held for months until PT. It started to get a lot better with her help although, I wasn't diagnoses by anyone to have actually having it. So I rulled it out until 3 days ago. I'm not sure what I have done, but my low, left ribs are burning and I can feel a rib under another. I'm wondering if my rib misalignment/rib flare (addressed by my PT) is tugging on my spine and all this urinary, bowel and nerve pain is from the tugging and the muscles that have swelled along the left side. Maybe this is causing a lot of misfiring nerves?? I feel this is another area to address, but unfortunately, there are only a few thoracic surgeons familiar with it and only a handful of doctors/radiologists know how to test for it, but I can tell you.. Whatever has happened has had me in tears multiple times today and in bed.
So 2 things I suppose that can cause nerve pain and radiating issues. Hemangiomas and Slipped Ribs SRS, but I'm stumped about the SVTs and internal vibrations, unless the internal vibration is the SVT?
This pain has caused anxiety/depression, anyone in this state and no answers would develop this at some point, so I don't doubt that some of my symptoms could be from these, but the pain and system interruptions are real. This is way over sharing, but I'd have to tell doctors. Today I urinated so much in 2 trips, I had to take pain medication because my left abdomen and bladder hurt so bad. Something isn't working properly and my tests have been good. I'm just stumped, but could nerves be causing problems?
I have good news, and bad. My doctor said he'd refer me to Mayo or UofM (he prefers Mayo), but I'm not rich by any means and we still have 3 children at home and 1 in college. I'd have to check with insurance and even so I have to figure out how to pay for it. I know for certain I would want the hemangiomas addressed as well as SRS as a possibility. I'm not sure what else this could be at this point, other than nerves misfiring from something.
I wish I could give you a hug x, you have been more attentive than my specialists 🙂 and I will never be able to thank you enough.
I attached a chiropractor Xray so you can see how misaligned I am in the thoracic, lumbar region. My left is being so compromised, but why?
Aimee xx

Jump to this post