Vertebral hemangiomas

Posted by brayimee @brayimee, Aug 4, 2020

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

Interested in more discussions like this? Go to the Spine Health Support Group.

Jennifer, Volunteer Mentor | @jenniferhunter | Aug 14, 2020

In reply to @brayimee "@jenniferhunter Something to write in my book of things to check. My neurologist let me know..." + (show)

@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.

Jennifer, Volunteer Mentor | @jenniferhunter | Aug 16, 2020

@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

4846 | @4846 | Dec 1, 2022

In reply to @jenniferhunter "@brayimee Hi Aimee. I also have 2 or 3 hemangiomas in my thoracic spine and they..." + (show)

@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

This is very like me. But I’ve been to so many surgeons!!!
How are you now.
Did they fuse your neck ?

Jennifer, Volunteer Mentor | @jenniferhunter | Dec 1, 2022

In reply to @4846 "This is very like me. But I’ve been to so many surgeons!!! How are you now...." + (show)

@4846 I did have spinal fusion surgery at Mayo 6 years ago and I had a great recovery. I had a single level fusion at C5/C6 done with only a bone graft and no hardware. I am a lot better off now than I was before spine surgery and my motion and head turning is normal because 5/6 doesn't do much of that. There is one slight difference in that I can no longer touch my chin to my chest, but it is close. When I came to Mayo, it was the 6th surgical consult.

Are you still looking for a surgeon for help?

4846 | @4846 | Dec 1, 2022

In reply to @jenniferhunter "@4846 I did have spinal fusion surgery at Mayo 6 years ago and I had a..." + (show)

Yes I’m in Houston. Big medical center. Seen many surgeons all say no surgery even though my EMG indicates nerve issues. 🤷🏻‍♀️

Jennifer, Volunteer Mentor | @jenniferhunter | Dec 4, 2022

In reply to @4846 "Yes I’m in Houston. Big medical center. Seen many surgeons all say no surgery even though..." + (show)

@4846 What surgeons need to be careful about is where is the source of the nerve issues? Is it a compression at the elbow joint or wrist, and not coming from the spine? Is it a compression between the collar bone and rib cage as in thoracic outlet syndrome? (I have that ) Is it a problem in the muscle not responding correctly to nerve signals? They also need to see a structural problem in the spine that can be correlated to the nerve symptoms that you have. I think in my case, my EMG showed that most of my nerves were functional. I did have muscle atrophy on the back of my shoulders that one surgeon didn't think looked abnormal, but I knew that it was, and my physical therapist also pointed it out to me. That was from the cervical central canal stenosis and I got a lot of that muscle back after my decompression surgery.

What do you imaging reports say? Do they list "moderate" conditions? What are the symptoms that you are having?

bresun | @bresun | Jan 26 3:29pm

I have same symptoms as you. All left sided too! I also found out I have vertebral hemangioma 2 of them. So now I'm curious if it's connected. my left rib hurts sooo bad sometimes! Left arm pain, left leg pain.. left side of head hurt and pressure. No idea what's causing all this.

Jennifer, Volunteer Mentor | @jenniferhunter | Jan 27 1:37pm

In reply to @bresun "I have same symptoms as you. All left sided too! I also found out I have..." + (show)

@bresun Welcome to Connect. Most of the time, vertebral hemangiomas have no symptoms and are just incidental findings on imaging. I have 2 or 3 of them and my doctor told me they are of no concern. There may be other reasons for your pain. I also have thoracic outlet syndrome which does cause tightness and pain in the ribs, arm and shoulder.

Have you discussed your symptoms with your doctor?