Can anyone tell what my MRI results mean please?

[family1023]

Had MRI on cervical spine and in the findings it says, "Tiny focus of signal alteration in the T2 vertebral body demonstrates intermediate T1 signal, partial fat suppression on the STIR sequence and is most consistent with atypical benign vertebral meningioma." When I type this is in on the Internet it comes up with brain or spinal tumor. Can anyone tell me if this is correct?

[leks]

Vertebral meningioma is a spinal tumour, yes.

Sorry for your new diagnosis, now be a good time to find a good neurosurgeon who has experience with spinal cord tumours....

[bobmiami]

FAmily 1023 - I see the "KEY word" to be 'benign'. Please look that up. AND please heed the words of my old friend Dr. Dick " the ONLY bad thing about a second opinion is NOT getting one". THEN, the FIRST time they tell you they want to "cut" say no,... and the second time... and by the 3rd time, you'll have done your homework and gotten enough opinions - to know what to do.

In MY case the first 2 NS's wanted to operate, I got a total of 5 opinions, and eventually the 1st NS changed his mind. Since 2007 STILL no surgery for my C6/7 BENIGN ependymoma. It's worth watching but do NOT be in a hurry.

[bobmiami]

AND... Family 1023 I should have quickly added, as most of us should 1/ I am NOT a Doctor. 2/ Everyone is different. Nonetheless, you'll find some answers and comfort here, on the group.

[landofconfusion]

Great to see you posting again, Bobmiami! Your advice has proven to be very helpful to me, & I recommend anyone who has just been diagnosed to carefully consider what you're saying-- in conjunction with input from various neurosurgeons (of course!). Sometimes it's hard to slow down before making a major decision when we're frightened and/or confused by a new diagnosis.

[rm1976]

Bob,

I am 38 male from NJ. I recently got diagnosed with Spinal cord tumor (Nov 10th, 2014) at C7 - T1 level. The first NS I met here in NJ wanted to do immediate surgery. I took second opinion from Dr. George Jallo at Hopkins (drove to Baltimore on Nov 25th), and Dr. Jallo is of the opinion that my tumor most likely is Ependymoma and its benign. He thinks that we should wait and watch and recommended against surgery right now. After clinical examination he recommended that we should wait and watch. Dr. Jallo advised that I should have MRI every 3 month for next 1 year and then once every six months for next year and then yearly and if tumor is growing and causing additional / progressive symptoms, then only we should go for surgery. He mentioned that he is monitoring some 30 patients from last 10 - 12 years and their tumor is not growing and not causing additional progressive symptoms. He also told me size of my tumor is 2 cm x 0.93 cm. Dr. Jallo said that after surgery current symptoms will most likely not improve as they are very minor and not causing any major discomfort. So I am better off to live with current symptoms as post surgery I most likely will have more deficits than current ones. My current symptoms are some dull pain in neck and back just below the neck. But this pain is on and off and very dull. My left front thigh is quite numb and left hand little finger feels little weak. I got diagnosed just by chance.

have some questions for you:

1. Are your symptoms steady / stable or you feeling any increase in symptoms as you are watching from last 7 years?
2. Is your tumor increasing in size?

Will really appreciate your response.

RM

[msweeney]

Hi Bob:

Really sorry that you have to go through this. Here is something I wrote many years back about my waiting and then eventually decision to have the surgery. I hope it is helpful. Lots of info here so feel free to let me know if you have questions.

My Old post:

This is a topic that is really important and in my reading of many of the postings is not dealt with as clearly as Joel has framed it here (thanks Joel). I kept looking for posts like this when I was trying to make my decision about surgery. Nothing troubled me more than the process of making my decision and the most difficulty I had emotionally was during this time period. So I have taken time to really think back about the process and lay out as much information as I could. The most unique attribute of my tumor was how slowly it grew and the relatively early detection (before much neurological damage had been done) so that the decision to remove it was not clear cut. There were no time constraints to my decision and that may be somewhat out of the ordinary.

I do not prescribe my course of action for everyone. Many people could have been in my circumstances watched the MRI’s, clearly understood over the year and a half from diagnosis to surgery that the symptoms were increasing slowly and come to the same conclusion. As you might surmise from my answer below, I tend to over analyze and over think things. As I explain later it was my way of dealing with the fear and stress. Ultimately that information helped me build consensus of understanding so that I could view and process the varied and numerous opinions and information in some sort of level, objective context. Many people could have found a competent NS and followed his/her advice and wound up at the same point. So consider this the far end of the spectrum opposite blind faith in your NS. Hopefully for those of you who tend to be closer to my end of the spectrum it will be helpful. For others you may want to skip this lengthy dissertation and go to the next posting unless you are having problems sleeping and are looking for a sleep aid.

1) Do you think you had surgery at the right time, or was it too early or too late? Or do you wish you never had your surgery?
I first had symptoms three years before diagnosis although they were so minor as to not be indicative of an SCT. The symptoms manifested during longer runs and were very subtle changes to my running gait. Gradually because of unconscious compensation for these weaknesses I developed low back pain and was forced to stop running. So for some time further neurological deterioration went unnoticed. After my low back pain subsided a bit I tried to start running again and found that my symptoms had become far more noticeable which lead to an MRI, and subsequently the SCT diagnosis. My NS at the time encouraged me to wait on surgery as he told me he could not make me any better by surgery and my symptoms were minimal. Of course his minimal was defined in neurological terms. I was unable to run for extended periods and that seemed rather major to me at the time. However when he explained the risks of surgery (bladder, bowel, sexual and sensory and/or motor deficit) I quickly understood why it was termed minimal. The plan was to wait and monitor growth of the tumor with MRI’s and to watch the symptoms.

I had my case reviewed by the tumor board at the University of Washington, the tumor board at the University of Kentucky, by Swedish Hospital here in Seattle and Dr. Jallo looked at my case. Additionally, I had my case reviewed by the top Neuro-oncologist in Seattle. The wait and see approach seemed to be the general consensus as long as there was no further deterioration in symptoms. The warning from all who had reviewed my case was that MRI’s alone were not sufficient enough information on which to base a surgical decision. It was explained to me that the MRI may not show growth and yet symptoms could continue to worsen. Apparently the spinal chord can be compressed to a large degree before symptoms begin to manifest. At some point the compression hits a critical point at which small changes, even undetectable by MRI’s, can have significant symptomatic changes. So I was told to be hyper vigilant about my symptoms.

Over the year and a half between diagnosis and my decision to have the surgery, I watched my symptoms closely. I had further tests including a full MRI of my spinal chord and brain, with and without contrast to rule out differential diagnoses. MRI’s of lesions in the spinal chord are not definitive in terms of identifying the type of lesion much less differentiating the subcategories or grades of SCT’s.

The thinking on this testing was that if I was going to leave this lesion in my spinal chord, I wanted to be as certain as medically possible that we had the correct diagnosis. So that as the medical members of my family shared, when you hear hoof beats you think horse and ninety-five percent of the time you are right but sometimes when you hear hoof beats it may be a zebra and you want to rule out the zebras. The full brain and spinal chord MRI in addition to thorough neurological testing can rule out many of these zebras. So I had the additional MRI’s and the very thorough additional neurological tests which still indicated an SCT.
I was very concerned about the potential impacts on what I called the high rent district. My tumor was at T-11 through T-9. So my bladder, bowels, and sexual functions were all at risk. So additionally, I had full urodynamic testing of my bladder functions as well as somatosensory testing and monitoring as well as electromyographic testing. The urodynamic tests would show any stigmata of a neurogenic bladder (frequency, urgency, urinary incontinence). This urologist also took a full history of bowel and erectile functions. The tests are very invasive and very uncomfortable but can tell you if your bladder functions operate within normal ranges for you age, sex, etc…

Similarly the somatosensory testing can show if the signals/waveforms of your nerves are symmetrical and fall within normal latency and amplitude. One could guess that I would have some abnormalities of the tibial nerve, which was evidenced by the testing but the big concern was about the pudendal nerve (which runs to the end of the male genitals). Both the pudendal and median nerve testing came back in the normal ranges. The tests were not as invasive and only somewhat uncomfortable on the pudendal nerve testing. The electromyographic (EMG) test also showed these similar abnormalities in my left leg. The EMG tests are minimally invasive and involved only mild discomfort. Finally, I had a full workup by a very experienced physical therapist that specializes in neurological rehabilitation that helped me establish a baseline for my motor functions and defined the losses to date in medical terminology.

My reasoning in doing all of this testing was three fold, first it established what I had lost to date and second it established a baseline for me that was both objective and specifically defined in medical terms. I had been told by all who rendered an opinion to be hyper vigilant with my symptoms. As a lay person I found this charge to be daunting as subtle changes are hard to track and my education and work life gave me little or none of the requisite skills in this area. As we have all experienced, you have to tell your history over and over again. I noted in medical reports how that history differed even though I felt I gave it in a consistent manner. Anecdotal information can have a wide variety of interpretations. I wanted to have the ability to have my baseline deficits and the history of those changes defined medically, objectively, consistently and as definitively as possible.
Finally, my last reason for doing all of this testing was because of my fear. It scared me deeply, what was at stake, and as we know fear can cloud judgment. When deep emotions get involved we begin to lose rational perspective. If I drank a good deal of water and I had to urinate twice in an hour I started to freak out that my bladder was going. If I saw an erotically charged scene in a movie and didn’t have any stirrings, I was certain I would never have sex again (sorry if this is too much sharing but it was a real fear and I would be less than forthright if I did not share it as well). My fears had got out of hand and my way of dealing with fear was to eliminate as much of it as possible in rational and knowledgeable fashion.

A quick side note, for the remainder of the fear, stress and emotional fallout that was not eliminated by this process, I went to a therapist/counselor. She was very critical in helping me work through the issues and minimize the impact in my life. I am a husband and father and it was important to me minimize the pain for my family. I felt that seeing this therapist gave me the best shot at this goal and it was one of the best things I did for myself and my family. I think it was a big relief to my wife that she didn’t have to feel that she was the sole gatekeeper of my emotional health. I saw the therapist, once a week for three months and that process helped me get through a good deal of the stress, fear and emotional turmoil that my diagnosis brought forth.

I will also iterate that I had to push very hard to get these additional medical tests completed. Nobody offered these tests nor did they outline them as an option. I kept having to push, ask and dig for this path. Some of this was covered by insurance and some of it I had to cover out of pocket. But eventually it formed the basis of my decision to elect surgery a year and a half after diagnosis. What came to light with these tests and over time was that my symptoms were progressing, albeit at a neurologically slow pace.

The neurosurgeons recommended surgery if there was an increase in symptoms which there definitely was. Another descriptive medical analogy was brought to light by some of the doctors in my family (including a surgeon). For someone who is trained to use a hammer, the world looks all too much like the head of a nail. The implication being that surgeons are trained to do surgery and their strength is to see surgical remedies. Now, that is an oversimplification obviously; you want a surgeon who believes that he can resolve your problem and feels very confident in his ability to do so, but ultimately I had to weigh the risks and the benefits of surgery and make the decision that takes these tradeoffs into consideration. My surgical decision was truly a tradeoff. As confident as a surgeon is or as knowledgeable as that surgeon is he or she can not get in my head and weigh those risks against the benefits and decide for me.

The tradeoffs were clear. I could continue to monitor my situation and watch my symptoms continue to slowly degrade my neurological capabilities. I could live with the uncertainty and fear and continue to enjoy a relatively healthy function maybe for several more years. However this path also carried a risk that a major change could happen without any early warning signs. Or I could risk the lesser potential of significant loss from surgery now, but hopefully remove the tumor cleanly and preserve as much function as possible for the long haul. In the end I opted for the latter.

From my testing and year and half of observation, it was clear that my tumor was very slow growing. It was also clear that my symptoms were increasing slowly. I hated watching myself slowly deteriorate. I did not want to risk any of the bladder, bowel or sexual functions. My research had lead me to understand that the healthier I was neurologically going into surgery, the better the chance I had at coming out of surgery with minimal loss. I also knew from studies that what you lose to the tumor before surgery will not likely return upon removal of surgery. I felt like I was willing to take a step backward to preserve function for the long haul.

Conclusion: The tumor was removed cleanly. My pathology showed a subependymoma, a low grade slow growing tumor. I will never second guess my surgical decision because it is easy to forget how much the uncertainty weighed on me. Hindsight is twenty-twenty and so there is the possibility that I could have waited perhaps another year or two without further, significant decline. During that time I could have enjoyed a better neurological condition. However, before I would draw that hypothetical conclusion I would have to wait to see where I end up and what deficits prove to be permanent. With my last MRI the NS told me I can expect further recovery.

2) Are you better off now compared to before surgery?
I am in month nine of my recovery and have made steady progress over that time. I hope that in another year even more sensory and motor function will return. I have significant gait disturbance which make all but short walks difficult and fatiguing. I take baclofen to help the hypertenicity in my left leg. I have light touch and temperature deficits in my right leg. I have nerve pain in my buttocks and left hip that I manage without pain meds. I have certain sensory deficits in my left leg as well as certain hypersensitivities as well (notably temperature hypersensitivity).

By and large my organs have been unaffected with the notable exception being irregularity which can be managed by added fiber (my choice is a quarter cup of flax seeds grounded to yield a half cup of flax meal). Bladder and sexual function have returned to normal.

3) Are you better off now compared to say, 1 week after surgery?
I am far better off then after my first week. I had little to no bladder or bowel functions, relying on catheters and suppositories. I had significant motor and sensory deficits from my surgical sight down. I started out in a wheel chair and left the hospital after eleven days on double arm crutches. Over the next two and half months I went from two to one to no arm crutches and my walking abilities continue to improve.

[peaceandlove]

Hi msweeney,

You have said :

"" It was explained to me that the MRI may not show growth and yet symptoms could continue to worsen. Apparently the spinal chord can be compressed to a large degree before symptoms begin to manifest. At some point the compression hits a critical point at which small changes, even undetectable by MRI’s, can have significant symptomatic changes. So I was told to be hyper vigilant about my symptoms. ""

Can you support this saying? I agree with you for this but even Neurosurgeon in my area says that every thing is related to MRI increase in size.
I keep on monitoring for the last 5 years my tumor by MRI, there is no increase in size, but my symptoms keep on progressing with no size change. Symptoms comes and went, there is no rules. I was about doing surgery and I canceled since symptoms disappear.
I am having a buttock/ hip pain for the last 15 days. I don't know if I will be for long, am waiting time to see if it will keep like this, then I will make surgery, but if disappear I will not make surgery.

The only thing is I am Worry to much !!!!!!! Am I doing right or wrong? Am I hearting my self by delaying and keeping myself under the pain without surgery, or I have to make the surgery early. Does buttock and hips pain have limit for pain which should not be exceeded or no, does my sciatic nerves will be damaged by pain or no, does there is limit for pain or no.

Thanks for any one who can advice, your experiences are very important, does someone have buttock/hips pain & weakness which get released by surgery.

Please reply.

Thanks

[msweeney]

I am not a doctor and not able to give you any medical advice. I can only tell you that my tumor did not show any measurable growth over a year and a half (the time we tracked it with MRI's). However I had differentials in my symptoms that were significant (increase my drop foot). Additionally my cord was significantly compressed and the surgeons were concerned about how much more compression the cord could take. You have had one of the leading surgeons (Dr. Jallo) for these tumors advise you so take comfort in that. I know it is hard to not worry about this. It can be like a black cloud hanging over your life. For many of us who have had the surgery, our outcomes left us with significant disabilities and deficits. That is what the surgery decision often entails, taking steps back ward to try and preserve as much function for the long haul. I can tell you that I would LOVE to go back to how I was before my surgery.

If your symptoms come and go then it can be questioned if they are in fact due to the tumor. My symptoms that changed did so permanently. Find a good Neurologist (as opposed to your surgeon). See him/her on a periodic basis so he/she can help you asses your symptoms. As I said before, it is difficult for people with no medical background to be knowledgeable and objective judges of the symptoms that may or may not be caused by the tumor. This tracking by a neurologist may give you the ability to let go of the stress. That is important because....

THE NUMBER ONE THING I WANT TO ENCOURAGE IS...enjoy this time before surgery. I know this is easier said than done. There are so many things I can no longer do because of my surgery. I still remember my last ski run, my last upright bike ride, running after my kids and the joys that come from having a body capable of doing all manner of things. I have made my peace with my new body and my limitations and I do not have regrets about my surgical decision. WHAT I DO HAVE REGRETS ABOUT...is robbing myself of some of those precious blessings of my life pre-surgery by being stressed, worried and over analyzing my medical circumstances.

Go for a nice long walk with a loved one. Go hike to a high place and watch the sun rise or set. We miss things most when they are gone...try to let that frame your appreciation for what you have know. Rise to this challenge and you will have far fewer regrets if your surgery does create significant deficits. If you are stuck and unable to do this consider seeing a counselor that might help you push through what is holding you back. I wish you the very best!

Matt Sweeney

[Peaceand love]

Not signed in. Talking as guest.
Hello Thanks for advice. I have been in pain for last 5 years. I traveled to nice places to enjoy as you say but couldn't. My honey moon in Phuket was disaster because of pain. In May one I will have my first baby boy. I schedule my surgery for February first Week. After this 5 years being in Pain it is not easy for me to say " wait and see" I am tired physically and mentally. Finally I talk hard decision but am sure from it. I will do surgery. At least I may have the chance to come back to normal when my surgery will be Done. I cannot continue my life as I am . I became unable. I cannot work because of pain. So I will be at home in both way even with or without surgery. So wwhy not taking chance.


I Hope my surgery will go well so I can inspire people on this forum. I am here for last 5 years. Every body is suffering.

good day my friend. God bless