Took my 8 yr old daughter to epileptologist yesterday. He said she has lesion on brain. A little later he called it a tumor. Is it the same thing?? I'm so angry that the two neurologists I've seen never mentioned this. They said her seizures were idiopathic. Please give me all the info you can. I've been posting on here for a while but haven't read much about lesions. He told me, they are usually benign at this age. Is a lesion the same thing as a tumor or a scar tissue?? I'm devastated. Don't know what's going to happen to her. They want to admit her soon and repeat the tests. Please any help is greatly appreciated. lazoo
I'm pretty sure a lesion is not the same as a brain tumour and that it is scar tissue. This is ofcourse pretty devastating I know, but to give you something positive to hold on to, the fact that the doctors have actually found why your child has epilepsy and where it is coming from means they may well be able to get rid of that bit of the brain and therefore the epilepsy. It's a long shot at this point, until tests are done etc, but keep hoping that things will be ok.
As for the change in diagnosis it might be that the scanner used this time is more advanced than the last one, and that it is showing a more detailed picture of the brain. This happened to my husband, he had an MRI at our local hospital, then he had a scan at one the pioneering type cental London hospitals and they had just installed a new MRI machine which showed problems that hadn't shown up before.
I'll keep my fingers crossed for you.
Try not to panic, though I know it's hard.
Back around 14 months ago I was told I had a "mass" on my brain. That was after a CT scan. They did an MRI and said that the lesion was scar tissue from a prior brain injury. Relax (as much as possible) and hope that the prognosis is good. Keep us posted. Kathy
When Mamma ain't happy ain't noone happy!
I don't think the two are the same. I was told after many tests it was idiopathic for me. I was told there was no tumour and no scar could be seen. After I had surgery and they examined what was removed I was told there was scar tissue. It just wasn't visible on the tests.
Thanks for all your replies. Went out of town. Think I would have gone totally crazy had we not. Could almost make believe it wasn't happening. Now I'm back and it's back to ugly reality. MrsPepper - how could they operate on you if they didn't know where it was coming from? - if nothing showed up, how did they know where to go. As I told nkrett in a previous post, I now believe thinking back over this visit that the Dr. was trying to break this to me slowly as he kept interrupting my silly questions with comments such as these things are usually benign at this age. I guess that's why he used the word lesion first and tumor second. He was so nice. Realizing I was in a state of shock, he told me I could e-mail him any questions I had. I never asked anything after I realized it was possibly cancer - I was just too stunned. My mom asked me how big it was and I couldn't believe that I hadn't even thought to ask. Please tell me how your surgery went - did you lose anything?? Did you get severe headache? Long-term effects?? Thanks so much for your support. I have no family living near. Feel I'm in this all alone and no one can understand the depth of my hurt. Thanks again, lazoo
Lazoo, Ever since I read your initial post regarding your daughter's new diagnosis I have thought of you often. I sense you have been extremely dedicated to your daughter's health and therefore can understand the intense frustration you feel with the doctors we all hope will help. There is a site that is quite medically technical but will, at the very least, provide a vocabulary for the knowledge you seek. When I met with my son's first (out of three) neurologists, I was "armed" with 42 questions aided by the use of the internet. His third neurologist/epileptologist believed the space (Virchow-Robin) on my son's MRI could very well be causing his seizures whereas the first two neurologists found these findings insignificant; a situation I know you can relate to. The site is a culmination presented by the National Library of Medicine, the National Center for Biotechnology Information and the National Institutes of Health: ncbi.nlm.nih.gov/entrez
You're in my thoughts....KP2002 p.s. Prepare yourself for negative reaction from the doc's. Some of them have egos that can't handle "regular people" having information they feel is privelaged to medical professionals; afterall, they spent years of blood, sweat, tears and money getting to a place where they felt omnipotent. An example: My son's first neuro was so angry that I had the wherewithall to ask 42 questions that he actually cut me short with incorrect answers, as well as, the inference that I probably caused my son's seizures.
KP2002 - Thank you so much for your nice words and the site for info. Any and all help is greatly appreciated. How is your son? Hopefully, no more seizures. Is the med working OK for him? I feel so lost here, like I've lost control. Just got back the results of a blood test taken before her new diagnosis. Everything was normal, except the lymphocytes were low. Do you have any idea what that can indicate? The unknown is so frightening. I feel I've been given more than I can bear. I'm glad you told me you've seen more than 2 docs. Do you have any idea how I can find the best place for brain surgury (best pediatric brain surgeon) or best brain cancer center? I'm trying to research this now so I will be ready if that is deemed necessary. This doc feels we need to do the testing right away. His urgency tells me this is not good. You seem extremely intelligent. Don't know what your background is, but you are certainly able to find out how to get info. I feel I've been given more than I can bear. Appreciate any help you can provide. Thanks, lazoo
Lazoo, The site webmd can provide information on lymphocytes. Low lymphocytes may be caused from a weakened immune system. I always ask for a copy of each of my family's medical tests (I even got a fax machine specifically for this purpose). That way I can refer to the specific results when communicating with others or doing further research. Also, you can determine just how "out of range" your daughter's low lymphocytes are, etc. Tuesday, I will fax my son's neuro a letter asking for his recommendation of a pediatric brain surgeon in the New York area. As soon as I get a response, I will share the information with you.
May you find within yourself the strength, faith and courage to get through this most difficult time. KP2002
Sorry I don't have a name yet of a neurosurgeon. Our neuro's nurse has not gotten back to me yet. I will ask again on Tuesday when I take my seven year old daughter in for an EEG. Unbelievably, she had a seizure with unconsciousness on Tuesday morning which lasted about thirty seconds. Take care. -KP2002
KP2002 - I am so sorry to hear about your daughter. I know this has to be a tremendous blow. I will be praying for all of you. How a mother's heart aches. Please keep me posted. I will be back in a little over a week. Hoping things go well for you this week. lazoo
I have not had any response yet from our neuro's office regarding a recommendation of a neurosurgeon in the GA area. If you have an immediate need please let me know and I will push. Otherwise, my son has an appointment on January 14th during which I will ask again. I came upon some info on lesions at stanford (dot) edu (slash) group (slash) neurology (slash) tutorial (slash) tsld058 (dot) htm and tsld059 (dot) htm Hope this helps. -P2002
lazoo, I just spoke with the nurse of my kid's neuro and she told me that a current pediatric patient in need of neurosurgery is going to John Hopkins to get a second opinion ( first from Yale-New Haven Hospital in CT). As I'm sure you know, John Hopkins is set-up for pediatric neurosurgery. Apparently, there is just one neurosurgeon, so he must be the one the CT patient is going to for a second opinion.
I hope this is helpful and I wish you and yours a new year of health and happiness. -kp2002
KP2002 - Thanks so much for the info and support. First of all, please let me ask what happened with your daughter? Has she had any more seizures? How's your son doing? So strange to have 2 in the same family start having seizures so close together. By chance did they happen to have the MMR booster shot recently? Read in our paper from last week or so that side effect of that shot can be brain damage. Atlanta Journal & Constitution 12/18/02 Living section pg. E9. The Medical College of GA was wonderful - the nicest, most compassionate doctors and nurses and staff that I have ever seen. They did Video EEG on my daughter. On third day, she had approximately 30 partial seizures, so they were able to accumulate plenty of data. They did PET scan, which I think he said showed how glucose traveled through the brain and did show the bad tissue though he said he saw no indication that it was aggressive. Also, they did neuropsych testing on her. Do not know the results of that but they are to send me a copy of the report. I personally do not feel the seizures have caused her to lose anything yet, but wonder sometimes where she might be had she not had them. The next step is the WADA test. I'm sending her records to Johns Hopkins to get a second opinion. She is allergic to local anesthesia - found out when she was having some teeth filled last year - so am very concerned about anything with anesthesia. In so many ways I feel this is out of my hands as it requires an expertise I just don't have and don't have time to thoroughly learn. Yet, I have to make the decision that will affect the rest of her life. I have to chose the right doctor. It's all very frightening. What on Earth could have caused this? Hope all is well with yours and hope you had a Merry Christmas. Praying for you and your family. lazoo
Lazoo- So good to hear your daughter's condition is not aggressive. My daughter has had only one seizure and a normal (!) EEG. She will have a closed MRI in January. It does seem odd that she and her brother both had their initial seizure at age 7. The night before her seizure, she ate a large red frosting pointsetta and if you recall her brother's initial seizures were triggered by red dye as well. Regarding contributing factors, I spoke with our neuro about the Virchow-Robin space in my son's brain and he said it probably developed in-utero. With a very healthy pregnancy, I can only conclude that, if the neuro is correct, an environmental factor such as mold exposure, factory emmissions, high levels of mercury in fish or the dental x-ray I had to get during my 9th week, for example, is the cause. In January I am testing both kids for exposure to the mold Stachybotrus Atra (spelling?) which can have a neurological impact. As you said, some situations are out of our hands; I am learing to trust fate. I believe inheritence most likely plays the strongest role in my children's case. Probably they inherited a low threshold to seizure activity. Their dad, dad's brother, dad's sister and her daughter all had febrile seizures. Raising the threshold is an important part of treatment. The three foods that lower my son's threshold are red dye, beta carotene and cinnamon. Regarding you daughter's care, John Hopkin's must have a very good reputation if a patient from Yale University Hospital (only one hour from NYC) is travelling to Maryland for a second opinion. It is fortunate that you felt compassion from the medical staff at the Medical College of GA but unfortunate that such compassion seems to be a rarity in the health care industry. Perhaps we, the people most affected by this lack of compassion are destined to be the ones to make a positive change. Wishing you, yours and everyone on this board a happy and healthy new year. -kp2002
Lazoo-It took me quite a while to write back. I lost quite a bit of memory after the surgery and keep forgetting about this site. As for my surgery, no they did not see any scars or anything on the tests. However I did have seizures while hooked up to the EEG and have had many many tests. They knew where the seizures were happening and could remove that area. I did lose some memory which I was told may happen. The vision I have lost was a suprise to me and the surgeon. I was also given a lower chance of success because they could see no scar. It was worth the try though. Unfortunatly the seizures have started again so there must be more scar tissue. How is your daughter doing?
Thanks for the reply KP2002 and Mrs. Pepper. My daughter is doing fine so far on the smallest dosage of Keppra (125mg). Sorry your surgery was unsuccessful and you have lost some vision and memory. That is my nightmare - that I will allow them to do this and it may not even control the seizures and she will lose important functions. An even greater fear is she is allergic to local anesthesia. I also have some long-term concerns as to what happens to the brain after surgery. What forms in the hollow space left by the surgery - scar tissue, fluid? Is there any scar tissue formed from the surgery itself that will lead to new seizures further down the road? How long have they been doing these procedures, especially on children? Any info on this would be greatly appreciated. lazoo