Tumor in T6

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Tumor in T6

Postby RodeoRose » Wed Jan 16, 2013 11:01 am

Since early 2011 I had been "pushing" a picture I had printed off an MRI of mine. This picture showed an odd "blotch" in my thoracic spine. I was used to seeing my SM, etc. on MRI's but this was seriously new. No doctor would give me the time of day and I couldn't find any help online either.

The last 3 months my thoracic pain had begun to dramatically change. We all know our bodies, we all know how our SM pain feels like, and it is obvious to me that the pain I was feeling was "new" and "different." Four different doctors gave me the brush off so I took it upon myself to see an actual spine doctor. He ran a new MRI and had found that my degenerative diseases are raging out of control...but that's not all...

As I was leaving his office I asked him to look at my picture, and to my surprise he agreed to. His eyes nearly popped out of his head and he took off towards his office. Turns out he was pulling up my new MRI and then the MRI that I pulled the picture off of. He said "Why didn't you tell me about this earlier?...." My response, "I didn't know what I was looking at, it's not my job...."

Long story short...I revealed to my dr that I have a hemangionoma (sp?) growing rapidly in my T6....that's been there since at least my MRI in 3/2011....The (good) news is that these tumors are benign...the bad news is they can cause a whole lot of hell and spread to other vertebrae, etc. My spine doctor is now rushing to decide if we'll attempt to remove it, WHEN we start radiation, and what affect this all will have on my CM/SM and all other spine conditions...

To think, for 2 years I tried to get someone to pay attention...and for 2 years I was ignored....

Does anyone else have spinal tumors? Are they "typical" with all of our conditions? I'm scared, frustrated, confused, IN SERIOUS PAIN, losing control of my arms, and many more sypmtoms...and still looking for answers....

God Bless,
Maggie....PS: It's been a while since I posted...can any tell me how to update my signature information?
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: Tumor in T6

Postby razzle » Thu Jan 17, 2013 2:55 am

go to control panel , then click profile then signature . welcome back
Once you choose hope, anything's possible.

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Re: Tumor in T6

Postby wendi » Mon Feb 18, 2013 1:25 pm

Welcome back!

That is really crappy! I wish we could line up all these Drs. who don't listen and stand on their back for an hour and when they beg for us to get off, act like we don't hear them and stand for another hour. With this and many other conditions, the squeeky (sp) wheel gets the dx. I know. It took me years to get mine. Like you said, you know your body. We all do. This is a lesson for anyone reading this and trying to be heard. If you are sitting there at a Dr.s office and you know you are getting the brush off, run around, what ever. Walk out, and on to the next one, till you find someone to listen to you. At least for a dx. Sometimes you can't get treatment, only management of symtoms, but sometimes, that is enough.

Rose: I wrote my PCP a letter about my DX and my upcoming surgery just to show him how wrong he was and to tell him how I was being treated in his office and why I was leaving his practice. A letter also helps you get it off your chest. You need to let it go as it festers inside you and that is not healthy either. Just be thankful This guy find it now and you will have treatment.

Take care,
Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: Tumor in T6

Postby Peggy Dupnick » Wed Feb 20, 2013 8:47 pm

Rose:
Hoping this post finds you doing better. Do you mind if I ask a few questions? My son (nonverbal autistic, immune and gastric problems, along w/ CM/SM and many other problems) has a hemangioma inside his L3 vertebrae. It was barely mentioned before his Chiari decompression surgery in Jan of 2012. No measurements were given. At his 5-6 months MRI it was noticeably mentioned; w/ measurements. Everyone I asked either didn't know what to do, or totally ignored me. I have had vascular tumors, along w/ one removed from my neck approx 20yrs ago. How did you get someone to listen to you? How worried should I be about my son having one? I don't think he has any other symptoms, like you did. Should I just wait until they do another routine MRI? Your input is greatly appreciated!! Wishing you better health. Take care!
Peggy in IN
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Re: Tumor in T6

Postby RodeoRose » Sun Feb 24, 2013 11:52 am

I am know at the stage of having to become the squeaky wheel as Wendy mentioned. The doctor that I thought was finally on my team has gotten cold feet...he literally no longer wants to be involved with my "case" because he doesn't understand it....REALLY!!! And yet, he HAS NOT released his notes, dx, etc. that includes the details of the tumor....without these notes my general physician doesn't believe, my PT won't work on me because she's afraid to increase blood flow to something so potentially dangerous. To make matters worse the last time I spoke to that dr he said "you know, without further studies I can't promise you that the tumor is benign...".....AND THEN HE LEAVES ME OUT IN THE COLD!!!!!!!!!!!!!!!

You know Peggy, if it were me I'd say you can never be too careful. Having your son's hemangioma looked at closer couldn't hurt. It's my understanding that hemangiomas can be "safe", some call it a freckle or a mole on a bone and will never cause any problems, which is really good news...It's just my opinion that I want to ensure it is "only" a hemangioma, that the size can be recorded so that it can be monitored every 6-12 months just to make sure it's not changing in any way. I've learned with my own issues that it's better to be safe than sorry...these truly are just my opinions, but I hope they may help you and your son in some way!

I've decided that I'm going to try a new tactic this week....I'm calling the hospital where my MRI's were done to speak with the radiology dept. The radiologists who read all my scans NEVER MENTION the tumor, however my spine dr says that they should've...just like with Peggy's son they should've measured so we could watch for changes. I'm going to as if there is a radiologist who would read my scan, and am planning on giving them the EXACT image and series # on the MRI's so they can go right to the images involved....I don't know if they'll even listen to me, or if the can/will read them, but I've got to do something....I'm also planning on turning in to the patient from hell to get that spine dr to release ALL of his notes to me so I can do what I need to do.

I'm so tired of having to use all of my time and (limited) energy having to do the DOCTOR'S WORK...I'm sure many of you are the same way....Why aren't we getting paid then?...lol!!!

Many blessings to you all!
~Maggie
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: Tumor in T6

Postby Peggy Dupnick » Sun Feb 24, 2013 1:11 pm

Thanks so much for your input. I am going to go look up the image #'s from his Pre-op MRI and call and do as you suggested. I want to know if it is stable or growing. If it is growing, I will push for another MRI, as it has been 7-8 months since the post op one last June.

Thanks for helping me find some direction here. Good luck to you in your fight, as well!!
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Re: Tumor in T6

Postby sarahb » Fri Mar 08, 2013 6:19 pm

Hi, I have one of these at T4 plus old fracture and two herniations in what they call the critical zone. My NS doesn't want to go anywhere near these surgically due to the complexity of the surgery. My symptoms are increasing with chronic pain now presenting in my rib area which is apparently common with thoracic issues. I have also lost 13kg in two months and have been through a battery of tests just to make sure that there is nothing sinister lurking anywhere else which thankfully it isn't. My GP thinks the weight loss is due to my body using more energy to do the basics,

I am overdue for my MRI so am organising that at the moment and crossing fingers that the syrinx hasn't moved into the brainstem. I will be interested to see how you get on regarding your tumor.

All the best from NZ
Sarah
Syrinx C6-T12 (and growing), Old compressed fracture T4, Disc Herniations T6/7 & T8/9 pressing on the spinal cord, Hemangioma T4, Aneurysm
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Re: Tumor in T6

Postby gunflint » Fri Mar 08, 2013 8:23 pm

sarahb,
Wow 13kg in two months! I'm somewhat ignorant in the metric system but I believe that's somewhere around 26 pounds to me. I cannot believe the body is capable of losing that much weight that fast by your body working harder to do the basics. Particularly if your in pain. If your not on some sort of extreme weight loss regime I think your doctor has some explaining and exploring to do. Good luck.
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Re: Tumor in T6

Postby sarahb » Fri Mar 08, 2013 9:05 pm

Gunflint - yep huge amount of weight loss and I was tiny to start with. They have done heaps of tests already and just waiting for one more test result to come back. Fingers crossed that this one will be okay. I am all skin and bone and muscles have disappeared in my legs. So far digestive system all cleared but no matter how much I eat the weight is still coming off but thankfully has slowed down. Maybe the MRI may shed some light. I am going to push for my kids backs to be checked as they are both having probs and son aged 27 has mild scoliosis. Will keep you posted
Syrinx C6-T12 (and growing), Old compressed fracture T4, Disc Herniations T6/7 & T8/9 pressing on the spinal cord, Hemangioma T4, Aneurysm
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Re: Tumor in T6

Postby RodeoRose » Tue Mar 12, 2013 12:04 pm

Wow Sarah! That is a huge amount of weight! I thought me losing nearly 16lbs in 12 weeks was bad....I truly hope that your doctors are able to do all they can to get things figured out for you, sooner rather than later. You most certainly will be in my prayers.

I'm still waiting for my GP to do the referral to have my T6 looked at more closely....it's a bigger nightmare dealing with the doctors in my life than it is the health conditions...I live in a small town and have to travel at least 3 hours to get any more "advanced" help, and as I'm sure many of you know, car rides are brutal...

Does anyone else have any heart problems too? Palps, sinus tach, etc? Have any of you ever been told that your body is "constantly over-producing adrenaline?" Or have you receieved a dx of "Zero Stage 3 Sleep?" I have all of these, they all seem to be connected, and all of them are kicking my butt...In fact, after wearing a King Of Hearts monitor for 33 days my cardiologist gave me the results a few days ago, and it's bad....

I'm in "moderate heart failure." I have three valves that are struggling, the mitral being the worst followed by the tricuspid and pulmonic. I have severe mitral valve prolapse and all the mentioned valves are regurgitating severely....Not to mention that for as long as I can remember I've always had a rapid heart rate....between 117-121bpm has always been my "norm." It seems my heart has beat to fast, for too long, and is wearing out. I'm now on Carvedilol, but it hasn't done anything....My cardiologist feels this is because of my body always being "amped up" on adrenaline....even at rest my heart rate never drops below 100bpm. After a very long discussion he came to the conclusion that "I'm an unlikely candidate for any valve replacements or a heart transplant."...."The Carvedilol is all we got right now," my cardiologist said....REALLY? I'm only 31.....If we can figure out this adrenaline issue that may help slightly, but the damage is really already done.....And here I thought that my CM/SM and hemangioma were the worst of my issues right now.....

All I can do is pray to God that the doctors who I meet on this rocky path I'm on learn something...they might not be able to help me, but maybe they'll be able to help someone else...if that makes sense.

I'm really sorry if I seem like a wet blanket on this post today...I guess I'm still trying to process it all....

Blessings to you all,
Maggie
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: Tumor in T6

Postby wendi » Tue Mar 12, 2013 1:18 pm

Maggie, Sweetie. That is horrible. I can't believe there is nothing to be done! You are only a year older than my son! Can you tell us where you live? Maybe there are other, better Drs. you can see? I know how car rides are, but sometimes you have to bite the bullet if it is your health we are talking about. I wonder if the CM/SM is affecting your heart? Sometimes sleep apnea can cause heart issues among other things and sleep anpnea can be caused from CM. Have you ever seen any of the great CM/SM specialist? I just don't want to give up on you or have you giving up on yourself.

Please keep fighting the good fight! We all care!

Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: Tumor in T6

Postby sarahb » Tue Mar 12, 2013 11:41 pm

Rodeorose I also have the beginning of heart issues. Started about the same time as the weight loss. Good luck for follow ups.

Sarah
Syrinx C6-T12 (and growing), Old compressed fracture T4, Disc Herniations T6/7 & T8/9 pressing on the spinal cord, Hemangioma T4, Aneurysm
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Re: Tumor in T6

Postby RodeoRose » Sat Mar 16, 2013 6:46 pm

I live in Hailey, Idaho. It's about 3 and 1/2 hours from the state capitol of Boise. Hailey is a very small town with very limited resources. I've looked far and wide and have yet to find anyone even slightly knowledgable in CM/SM in the state. Years ago I had an appt. date set to see Dr. Oro at the Chiari Clinic in Colorado and as my luck would have it less than 10 days before my appt (one I'd been waiting for almost 7 months) my CM went from a priority to an emergency. I was taken to Boise where a general neurosugeon was brought in to do my decompression, laminectomy, and arachnid cysts take-down. At first I thought I had actually found a "local" dr who knew my condition!...then the sad reality kicked in that he actually had almost know understanding of CM and had, in a sense, done a "hack-job" on me....Needless to say I was home recovering the day my appt shouldve taken place in Colorado...I had missed my plane. Since then my insurance carrier has changed and they are not accepted at the Chiari Clinic :(

Strangely enough, despite not having any stage 3 sleep, I don't suffer from any sleep apnea...totally confused my cardiologist with that one! He is, though, still doing all he can to present my case to many of his colleagues and seeing if any of them see connection between CM/SM, no stage 3 sleep, heart issues, etc. He almost seems like a dog with a bone right now, and I'm ok with that!!

I couldnt get an appt with my neurologist until April. This will be the first time I've seen her since the T6 hemangioma dx and the additional heart dx's...she runs very hot and cold though when it comes to her treatment of me. My GP wants her to decided what to do with my T6 even though he'll ultimately have to write the referrals for insurance reasons...he's really good at passing the buck. Here's hoping though that my neurologist is on the ball at April's appt. and willing to take all of the new info, sit down, work it like a puzzle, and see what picture evolves...and when that picture appears I pray to God she's willing to help me!

Recently I was put on a Butrans patch for my pain...it hasn't touched it. My pharmacist recommends that if I'm going to be on a patch that fentynal (sp?) would be the better way to go? Has anyone ever been on it? Has it helped? Any side effects?

A blessed weekend to you all,
Maggie
PS: Sarah, I truly hope that you can get answers, and treatment, for your heart, weight loss, and other issues. You are in my prayers.
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: Tumor in T6

Postby wendi » Mon Mar 18, 2013 8:24 am

I do wonder if your heart problems are being caused by the cm/sm? It has been known to happen. Of course it is not fair and you could have both. Have you tried Dr Ellenboggen (sp?) in Washington? He may take you and I've heard good things about him. Also, Dr Oro has done a 180 on us on the way he is treating the sm mostly, he wants to treat with diet now which is strange. I was looking around the old TCI site and saw they moved and they now take insurance where they didn't used to. At least they did not particpate and now they do, so don't assume your insurance is not accepted. Things change all the time. It does always take 3-4 months to get an appt. with these specialist tho and I really think you need to be seen again by someone who knows what is what. I'll be thinking and rooting for you! I'm worried about you.

gentle hugs to you,

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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