Vertebral hemangiomas

Posted by brayimee @brayimee, Aug 4 3:39pm

Hello everyone! I am new to connect and finding my way around well. I appreciate all the comments and advice from everyone.

I have been dealing with sudden health issues for 5 months. Went from a very very active person to basically resting all day. My life has been turned upside down and it's been a struggle.

After a so many scans and test, the only things that have show up are T1 & T11 vascular hemangiomas and developed PACs /SVTs, Inactive gastritis.

My symptoms are (also listed on another discussion board Internal vibrations & Nerve "firing) Left side nerve pain from upper abdomen to goring, down to the left leg and into right glute. Facial numbness, tight chest and developed PACs/SVTs. Bowel/bladder issues (pain is left side only), Pins/Needles, numbness, heart rate changes, tight chest, and very weak/heavy legs after short activity. Upon research, T1 & T11 nerves control these areas.
**Note, one way I try to help myself relieve gas is myofascial release with yoga balls along my spine T11 all the way down. I can get things to stimulate. its really the strangest thing.

3 of my doctors dismiss these as my issues, but I don't know what else would suddenly cause so much nerve pain, bowel/bladder issues, leg weakness etc. I am so frustrated after spending $1,000 on testing the last 5 months. Although I do feel blessed I am getting any testing at all. I have a few more tests/visits coming up, but I might be turning to Mayo for my complicated case.

I am looking to connect with anyone who knows more about these.

Thank you all for reading!
Aimee

Liked by migizii, red3

@brayimee Welcome and I'm so sorry what all you are going through. The only suggestion is to go to a Mayo Clinic. They are rated # 1. I had a 9 hour surgery there on my back. It was a big surgery and I'm still recovering and will be for awhile. It's only been two month since my surgery.
I feel they could help you there. I don't know where you live. We have to drive 3 1/2hours to get to the Mayo at Rochester, MN. I wish I could help you more. My thoughts and prayers will be sent your way.

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@lilypaws

@brayimee Welcome and I'm so sorry what all you are going through. The only suggestion is to go to a Mayo Clinic. They are rated # 1. I had a 9 hour surgery there on my back. It was a big surgery and I'm still recovering and will be for awhile. It's only been two month since my surgery.
I feel they could help you there. I don't know where you live. We have to drive 3 1/2hours to get to the Mayo at Rochester, MN. I wish I could help you more. My thoughts and prayers will be sent your way.

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I am in Michigan so not to far, but getting answers and resolutions is worth the drive.
I have a few more tests to go through and then I'm highly interested in calling.
I hope you are doing better each day.
Thank you for the prayers!
Aimee

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@brayimee

I am in Michigan so not to far, but getting answers and resolutions is worth the drive.
I have a few more tests to go through and then I'm highly interested in calling.
I hope you are doing better each day.
Thank you for the prayers!
Aimee

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@brayimee My primary care doctor referred me to Mayo. If you have a good Primary Care Doctor I think you get in faster to Mayo.
I'm aching all over my body. It seems like the weather has something to do with it. I do have arthritis, but since the surgery I can't take my Celebrex, an anti-inflammatory till August 19. I think it thins the blood, but helps the arthritis. I'm going to rest today. I am depressed too, mornings are the worse for me and then as the day goes on I start feeling better. Take care of yourself and I hope you get help.
Blessings and prayers, Jeanie

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@brayimee STill thinking of you. I read what you had and I am so sorry that I can't help you. I wish I could help you. I will continue to pray. I'm feeling better today, My back is not hurting. I have a brace, but can't bend, twist or lift very heavy things. I have a lot of healing to do, but at least there is an end, where for you I don't know what to say. I wish you could go to Mayo Clinic. There are 3 around the US and they are rated #1. Even if you could fly and afford it. Blessings, Jeanie

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@brayimee I see you have had some spine imaging. Did you have imaging of your cervical spine too? Have you had a whiplash injury? I ask because that could explain some of the symptoms you have. A whiplash can damage discs which later bulge and herniate which can cause compression of the spinal cord or nerves that exit the spine at the nerve roots. If you have spinal cord compression, it can cause bladder/bowel issues and heaviness in the legs and an uneven gait. A whiplash can also damage other neck muscles and cause thoracic outlet syndrome which compresses nerves or vessels because of tight muscle or scar tissue in muscles through which the nerves pass. That can cause tightness in the chest which can contribute to a racing heart. I have had a whiplash that caused spinal cord compression which affected my ability to walk. It gave me weird pains all over my body called funicular pain. I had surgery at Mayo Rochester to decompress my spinal cord which gave me my life back. I have thoracic outlet syndrome (TOS). Mayo is a good place to have that evaluated because there are not a lot of doctors who understand it and you could have both of these issue contributing to the problem. Treatment for TOS has been long term physical therapy for me with myofacial release. Facial pain can come from TMJ and that can be related to having TOS. I have experienced that too. Here are some links for information.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://www.ncbi.nlm.nih.gov/pubmed/20938789
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://mskneurology.com/true-cause-solution-temporomandibular-dysfunction-tmd/

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@jenniferhunter

@brayimee I see you have had some spine imaging. Did you have imaging of your cervical spine too? Have you had a whiplash injury? I ask because that could explain some of the symptoms you have. A whiplash can damage discs which later bulge and herniate which can cause compression of the spinal cord or nerves that exit the spine at the nerve roots. If you have spinal cord compression, it can cause bladder/bowel issues and heaviness in the legs and an uneven gait. A whiplash can also damage other neck muscles and cause thoracic outlet syndrome which compresses nerves or vessels because of tight muscle or scar tissue in muscles through which the nerves pass. That can cause tightness in the chest which can contribute to a racing heart. I have had a whiplash that caused spinal cord compression which affected my ability to walk. It gave me weird pains all over my body called funicular pain. I had surgery at Mayo Rochester to decompress my spinal cord which gave me my life back. I have thoracic outlet syndrome (TOS). Mayo is a good place to have that evaluated because there are not a lot of doctors who understand it and you could have both of these issue contributing to the problem. Treatment for TOS has been long term physical therapy for me with myofacial release. Facial pain can come from TMJ and that can be related to having TOS. I have experienced that too. Here are some links for information.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://www.ncbi.nlm.nih.gov/pubmed/20938789
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://mskneurology.com/true-cause-solution-temporomandibular-dysfunction-tmd/

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@jenniferhunter I've only had my neck xrays by a chiropractor.
I hit another dead end with doctors. My PMR referred me to a psychiatrist 🙁 and didn't want to even acknowledge that slipping rib syndrome could also be a cause. When this started in April it was all left low ribs and upper abdomen. Then everything on my left just fell apart. I've hit a dead end other than driving to WV to get a 1/2 consult with a thoracic surgeon who specializes in checking ribs. If its a positive, he does surgery next day.
No other doctor has thought about neck. I had whiplash years ago 17 years I believe so I'm not sure that us my issue. However I do have a hemangioma in T1 which is a vessel tumor in my thoracic spine at the neck level. I have been pushed away on that idea by all doctors 🙁
Hugs to you xx Thsnk you for reaching out.
Aimee

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@brayimee

@jenniferhunter I've only had my neck xrays by a chiropractor.
I hit another dead end with doctors. My PMR referred me to a psychiatrist 🙁 and didn't want to even acknowledge that slipping rib syndrome could also be a cause. When this started in April it was all left low ribs and upper abdomen. Then everything on my left just fell apart. I've hit a dead end other than driving to WV to get a 1/2 consult with a thoracic surgeon who specializes in checking ribs. If its a positive, he does surgery next day.
No other doctor has thought about neck. I had whiplash years ago 17 years I believe so I'm not sure that us my issue. However I do have a hemangioma in T1 which is a vessel tumor in my thoracic spine at the neck level. I have been pushed away on that idea by all doctors 🙁
Hugs to you xx Thsnk you for reaching out.
Aimee

Jump to this post

@brayimee Hi Aimee. I also have 2 or 3 hemangiomas in my thoracic spine and they are not an issue; they are asymptomatic and I only know about them because of the MRI. Your symptoms of leg weakness and bowel/bladder issues are a red flag for spinal cord compression, and if you have that, it can cause permanent nerve damage and permanent incontinence if left untreated to progress. My recommendation is to see a neurosurgeon about your neck, not a chiropractor. If you have a herniated disc, the chiropractor manipulating that can cause permanent damage. Here's an example of why…. I was having gait instability and weakness walking when my cervical spine was out of alignment when muscle spasms were moving the vertebrae around. I was found to have 2mm of retrolisthesis (backward slipping) of C5 over C6, and my spinal cord was compressed by the ruptured disc and bone spurs so there was no fluid space around the spinal cord at that level. I would limp and have bladder retention, and then at my physical therapy appointment, my PT realigned my vertebrae very gently with muscle assist, and those symptoms resolved until the next time a spasm moved it again. If an aggressive move was made on my neck, it could compress it more than it already is compressed or squish more of the jelly out of the ruptured disk into the spinal canal collapsing the disk even more. Essentially, every time my neck shifted, the spinal canal got smaller on an already compressed spinal cord. It took 20 years for that to happen after my whiplash, so yours at 17 years post accident is in the ballpark. You don't need a psychiatrist, and who ever said that doesn't really want you as a patient. Get an opinion from a spine expert. I was turned down 5 times by local surgeons over 2 years because they didn't understand the connection of the body pain I had just like yours, and the cord compression in my neck. It was after I found medical literature with cases like mine (shared in my prior post to you), and I contacted a surgeon at Mayo that I got help. None of the surgeons before Mayo listened to me, and I was told the spinal cord doesn't feel pain, and that I may have an inflammatory problem like MS and was denied surgery. I'm not sure what slipping rib syndrome is, but spinal cord compression can cause pain anywhere below the affected level. A big clue in that for me was when I turned my head, I changed where that pain was. No doctor listened when I said that. It was because it moved the bone spurs across the cord as I turned my head causing it to affect another area. The spinal cord is supposed to float in the fluid in the spinal canal and it moves like a rope in there when you bend your neck or twist. I learned all that watching spine surgery meeting presentations online. Doctors have to figure out where your pain is coming from, and is it from multiple places before surgery is considered. Mayo is best in the country for neurosurgery and I wish I had come there first. My surgeon listened and he understood what funicular pain was (when you get pain anyway in your body referred by the cord compression in the neck). I wasted 2 years on 5 different surgeons who were never going to help me.

Also a note about ribs. If you have thoracic outlet syndrome like I do which makes my chest tight, ribs sometimes twist and hurt a lot until my PT gets they realigned by working out the muscle spasm and tightness that caused the shift. Here is my patient story and I would highly recommend my Mayo neurosurgeon, Jeremy Fogelson. He helped me again recently by recommending a surgeon to set my broken ankle, and I came back to Mayo for recent surgery on his recommendation. From my experience as a patient, I think you should be evaluated for cervical spine issues and TOS and you can do both at Mayo. If not Mayo, find another teaching medical center that treats TOS in order to find doctors who understand it. If you have questions , please ask. I help because of how hard it was for me to get surgical help and what I learned about the pitfalls of being a patient with symptoms that doctors are missing.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

REPLY
@brayimee

@jenniferhunter I've only had my neck xrays by a chiropractor.
I hit another dead end with doctors. My PMR referred me to a psychiatrist 🙁 and didn't want to even acknowledge that slipping rib syndrome could also be a cause. When this started in April it was all left low ribs and upper abdomen. Then everything on my left just fell apart. I've hit a dead end other than driving to WV to get a 1/2 consult with a thoracic surgeon who specializes in checking ribs. If its a positive, he does surgery next day.
No other doctor has thought about neck. I had whiplash years ago 17 years I believe so I'm not sure that us my issue. However I do have a hemangioma in T1 which is a vessel tumor in my thoracic spine at the neck level. I have been pushed away on that idea by all doctors 🙁
Hugs to you xx Thsnk you for reaching out.
Aimee

Jump to this post

@brayimee I'm sorry you have this problem.. Agree with Jennifer Hunter. It's the pits when you have to go through so many doctors. Stay strong and I think Jennifer Hunter had the answers for you. Just wanted to let you know I'm thinking of you.
m

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@jenniferhunter

@brayimee Hi Aimee. I also have 2 or 3 hemangiomas in my thoracic spine and they are not an issue; they are asymptomatic and I only know about them because of the MRI. Your symptoms of leg weakness and bowel/bladder issues are a red flag for spinal cord compression, and if you have that, it can cause permanent nerve damage and permanent incontinence if left untreated to progress. My recommendation is to see a neurosurgeon about your neck, not a chiropractor. If you have a herniated disc, the chiropractor manipulating that can cause permanent damage. Here's an example of why…. I was having gait instability and weakness walking when my cervical spine was out of alignment when muscle spasms were moving the vertebrae around. I was found to have 2mm of retrolisthesis (backward slipping) of C5 over C6, and my spinal cord was compressed by the ruptured disc and bone spurs so there was no fluid space around the spinal cord at that level. I would limp and have bladder retention, and then at my physical therapy appointment, my PT realigned my vertebrae very gently with muscle assist, and those symptoms resolved until the next time a spasm moved it again. If an aggressive move was made on my neck, it could compress it more than it already is compressed or squish more of the jelly out of the ruptured disk into the spinal canal collapsing the disk even more. Essentially, every time my neck shifted, the spinal canal got smaller on an already compressed spinal cord. It took 20 years for that to happen after my whiplash, so yours at 17 years post accident is in the ballpark. You don't need a psychiatrist, and who ever said that doesn't really want you as a patient. Get an opinion from a spine expert. I was turned down 5 times by local surgeons over 2 years because they didn't understand the connection of the body pain I had just like yours, and the cord compression in my neck. It was after I found medical literature with cases like mine (shared in my prior post to you), and I contacted a surgeon at Mayo that I got help. None of the surgeons before Mayo listened to me, and I was told the spinal cord doesn't feel pain, and that I may have an inflammatory problem like MS and was denied surgery. I'm not sure what slipping rib syndrome is, but spinal cord compression can cause pain anywhere below the affected level. A big clue in that for me was when I turned my head, I changed where that pain was. No doctor listened when I said that. It was because it moved the bone spurs across the cord as I turned my head causing it to affect another area. The spinal cord is supposed to float in the fluid in the spinal canal and it moves like a rope in there when you bend your neck or twist. I learned all that watching spine surgery meeting presentations online. Doctors have to figure out where your pain is coming from, and is it from multiple places before surgery is considered. Mayo is best in the country for neurosurgery and I wish I had come there first. My surgeon listened and he understood what funicular pain was (when you get pain anyway in your body referred by the cord compression in the neck). I wasted 2 years on 5 different surgeons who were never going to help me.

Also a note about ribs. If you have thoracic outlet syndrome like I do which makes my chest tight, ribs sometimes twist and hurt a lot until my PT gets they realigned by working out the muscle spasm and tightness that caused the shift. Here is my patient story and I would highly recommend my Mayo neurosurgeon, Jeremy Fogelson. He helped me again recently by recommending a surgeon to set my broken ankle, and I came back to Mayo for recent surgery on his recommendation. From my experience as a patient, I think you should be evaluated for cervical spine issues and TOS and you can do both at Mayo. If not Mayo, find another teaching medical center that treats TOS in order to find doctors who understand it. If you have questions , please ask. I help because of how hard it was for me to get surgical help and what I learned about the pitfalls of being a patient with symptoms that doctors are missing.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Jump to this post

@jenniferhunter Something to write in my book of things to check. My neurologist let me know loud and clear he was a brain doctor and that's it. Gave me a brain scan and said see you in 3 months 🙁 its such a defeated feeling.
It looks as though I will take a trip to WV to speak with a thoracic surgeon who deals with Slipping rib syndrome (SRS) if its a no, its another thing ruled out, if its a yes, I see if surgery will help. Nothing to lose.
Im going to Screencast you post to me and put it in my health file 🙂
Thank you for reaching out. Support is my biggest hope at this point.
Aimee x

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@lilypaws

@brayimee I'm sorry you have this problem.. Agree with Jennifer Hunter. It's the pits when you have to go through so many doctors. Stay strong and I think Jennifer Hunter had the answers for you. Just wanted to let you know I'm thinking of you.
m

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@lilypaws
Thank you for your support xx it means the world to me!
Aimee

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@brayimee

@jenniferhunter Something to write in my book of things to check. My neurologist let me know loud and clear he was a brain doctor and that's it. Gave me a brain scan and said see you in 3 months 🙁 its such a defeated feeling.
It looks as though I will take a trip to WV to speak with a thoracic surgeon who deals with Slipping rib syndrome (SRS) if its a no, its another thing ruled out, if its a yes, I see if surgery will help. Nothing to lose.
Im going to Screencast you post to me and put it in my health file 🙂
Thank you for reaching out. Support is my biggest hope at this point.
Aimee x

Jump to this post

@brayimee Neurologists are like detectives who look for problems with the nerves or brain and they test nerve function. They are not surgeons. It sounds like your doctor is looking at the brain and waiting to see if something will happen. That's a good way to waste 3 months if your brain imaging is normal. The only doctors who examined me and understood the unusual symptoms I had with spinal cord compression were at Mayo. I was warned about incontinence by a doctor who did a spinal injection on me before I came to Mayo and he told me if that happened, it was an urgent situation and spine surgery to decompress my spinal cord would be needed ASAP. If your doctors don't understand that connection, move on. I did have retention as an earlier symptom and it would have progressed if I had let it. If you catch it early and have decompression surgery, they can fix it, but at some point nerves cannot recover. I did loose muscle in my arms and shoulders from the spinal cord compression and I got back about half of what I lost, so likely that is a permanent loss since it has been 4 years since spine surgery. I had pain during those 2 years that I was complying with every test the doctors wanted and waiting weeks for follow up appointments and it was a waste of time, and none of them would do surgery to help me because they didn't understand my symptoms and more importantly, they didn't want to risk their reputation on a possible bad outcome. They are scored by insurance companies on their success rates for procedures and that affects their earning potential. At Mayo, the patient comes first, not the doctor's ego. If I had come to Mayo first instead of wasting those years, I would be better off right now and probably still have all my muscle. Mayo is also very efficient. You may have to wait a few months to get in, but when you are seen they will get all exams and testing with results usually in about a week, and you will have an answer. If you want to consider Mayo, you should contact them now and apply. That costs nothing, and you can change you mind. They will want a copy of any imaging you have. If you do see a neurosurgeon at Mayo, they will order testing with a neurologist who they work with in the spine center as they do testing a bit differently. Your neurologist may be able to help you get in. You can request a specific surgeon like I did, or they will assign one for you. With the COVID lock down backlog, it may take longer too. Mayo also has thoracic surgeons if you wanted to get an opinion on SRS.

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@brayimee I found this today with a comprehensive list about spinal cord compression in a Mark manual. I thought you may be interested. Here is the link. https://www.merckmanuals.com/home/brain,-spinal-cord,-and-nerve-disorders/spinal-cord-disorders/compression-of-the-spinal-cord

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