my 5 year old went for ct yesterday and was called 3 hrs later that said must have a mri today
My 5 year old daughter suffers from headaches with vomiting . She has had these for about a year that has gotten worse . Her doctor decided to send us to the hospital for a ct scan within hours before the drs office got the results the hospital called them and said she needs to come in today for an mri with and without contrast ... does this mean they found something ? She has had prior health issues when she was 9 mths old she developed an infection that appeared to be over night her lymph nodes became swollen in her neck so badly that it required surgery and a 13 day hospital stay and a month of home health care ... her fevers was so bad and she had one for 8 days straight then one day became better all of a sudden .... she seems normal and healthy now just has trouble with head pains .... is this normal to be called back for more tests so quickly ? I just need some one to be honest with me
There are many many reasons why they could possibly send her for an MRI so quickly. Some reasons benign and harmless, others not. I'm sorry you are going through this and can't imagine the stress. I cannot say whether or not it is unusual for them to call so quickly- it depends on the facility. It sounds like the radiologist did see something on the CT but it's likely that they need an MRI to get a picture of what it is and whether or not it is concerning. At least they are handling this situation quickly, and I suspect you will get answers quickly as well. Another member posted a similar story recently, but she has to wait for a month before getting in to the MRI! Best of luck and keep us updated.
If you read another post recently - someone saw an artifact (which is light or something they could not explain so called the person back for an MRI) so there are lots of reasons.
You should be entitled as her mom to her medical information. So you may be able to get a copy of the report and CD of the CT since it is over 24 hours ago. CTs are better with bonier structrures, MRI with softer - they both have good and bad points as imaging. With a small child - movement can cause weird things to show up too.
Thank you both so very much ... we went that day for the mri and as soon as we left we got the call within 30 minutes saying something was found on the mri as well and they are sending us to Vanderbilt childrens hospital . The neuro doctor at our hospital here says we need to be seen this week but we are still waiting on Vanderbilt to call us and say if we can come this week but no one has given us any answers on what it is still ... I have the cd and a large white spot is on it but I have no idea if that means tumor or what ... The only thing the neurology dept has told us at the childrens hospital is not let her swing or slide or anything that she can fall from because her balance may become effected soon . We are just waiting on a time and day to go to the childrens hospital but it is very stressful I wish I knew how to read these scans because I do not handle stress very well and wish I knew what we was dealing with .
Let's see how to explain this - when you are in the MRI - they actually take the MRI several different ways to light up different things. So if you look at the film it will say something weighted etc.
That way they can tell if it is a cyst or tumor and the nature of it being cyst or tumor. Odd that they are not telling you anything at all though... you are her mother!
Just FYI - some people are born with cysts - and they can get quite large so they need to be removed. Lets hope it is that. Keep us posted. I am moving over the next couple of days so if I am not responding - that is the reason.
I'm so sorry you're going through this :( I can vouch for Vanderbilt though. My son has problems with his brain and see's neurologist, neurogeneticist, pulmonologist, and sleep dr's there...they are VERY good! We live in Chattanooga and travel there regularly for care for my son.
As for the info...you have to be very very demanding sometimes when it comes to the reports and the knowledge that they have. They don't always think that you will understand or that you don't need to be worried..I'm absolutely not that way and I'm sure you're not thinking that way. I have to know what's going on. You have the right to know every single thing..whether you have to make many phone calls to do so is another thing. Let me know if you need any advice on dealing with those things..feel free to PM me anytime.
I'll be keeping you and your family in my prayers.
Well the last day I commented on the 15th we was called right after my post at 230 and told by the neurosurgeons office in Nashville to come directly to the hospitals Emergency dept so we did ... we had no idea of the roller coaster ride we would be on the next few days. We was treated so nicely in the E.D. while we waited for a team of neurosurgeons to come and evaluate the MRI scans about 4 am in the morning on the 16th we was told we was being admitted into the hospital in the PCCU. We was taken up to the 5th floor so she could be monitored every hour with neurological tests. We never expected to be in the critical care unit but they made the time there very easy and the hospital has the best doctors ever ! We was told they would do surgery but then they sent her for a sedated MRI that took 2 hours and after studying it for about 24 hours they came to our room and told us that it is a cns tumor and it is common but hers was concerning and they wanted to evaluate it for a while because it is located in a risky spot to operate so they do not want to do that unless there is no other choice . She will be seen there by a few drs on a regular basis ... She was sent home on steroids and several other medications to help her but she is still not herself and sleeps about 18 -20 hours out of a 24 hour day but this is something we will discuss on Monday when we meet with the doctors to discuss when she should return to school because right now they think it is too risky . I am happy to be home after 3 days in the hospital but I am scared to death with her being home knowing she has this tumor that is putting her in pain and making her sleep ( because her sleep pattern before was only about 6-8 hours in a 24 hour period ) she was always so energetic and now so limp so I am stressed being home because I am afraid she is sleeping too much . I don't want to sound like a crazy mom but I think this is very abnormal and since I found out she had inflammation on her brain and possible slight pressure I get worried the sleeping comes from that and it may be getting worse ... I understand some medications make you sleep but the ones they gave her they said should not make her sleepy except one and she is not taking it right now because its only for extreme pain and she was doing this before she started the medication this was one reason we took her to the dr 2 1/2 weeks ago because it worried us .
Is she on any seizure medications? They can make a person very groggy. Also remember that she just went through a few very traumatic days. I imagine that can take a toll on her poor body. Let her rest as much as she needs.
CNS seems to be a rather generic description (central nervous system). Did they say what type of tumor they may think it would be? I suggest you try to get as many details as possible to educate yourself. Find out the exact location so you know what to look for as far as symptoms. Certain tumor locations can cause fatigue. Request copies of all MRI reports, and it should give more specific details. If I were you I would also look into getting a second opinion. Now that you know it is a tumor, you need to learn about all of the options for treatment. There has been a lot of progress recently as far as options. There is surgery, radiation, Gamma Knife, cyberknife, proton beam radiosurgery, etc. When seeking a second opinion, look for neurosurgeons who specialize in that type of tumor, that location, and/or pediatrics. Also consult surgeons who also specialize in these other treatments. You would be amazed at how much opinions and perspectives can vary between physicians.
I also suggest you consult your pharmacist about the medications. Ask him/her if fatigue is a likely side effect, or if a combo of meds can cause it. This might reassure you, or tell you to speak to the doctors about trying something else.
Please keep us updated and know that you and your daughter are in my thoughts and prayers. My heart breaks for you thinking about how overwhelming this must be. Be sure to take care of yourself, and let us know if you have any questions.
They just told us they have never seen anything like hers so we have a specific home plan that tells us if she runs over 100.5 or if she sleeps a lot or stumbles and etc to bring her to e.r. They have us going to 2 neurologists and 1 neurosurgeon so we hope between all of them we will find more out . We had the original MRI but they kept it in Nashville but I saved some on my laptop and We are seeing a doctor here in our town on Monday and we hope we can find more out then .... My husband and myself have started a list of questions we will ask on Monday and we have decided we want more answers now because we was told we would not know until October if she has to have surgery but I think with her odd behavior we should find it out now . The sleeping thing we are thinking it could be meds or from being tired in the hospital so we are monitoring her very closely and we are checking her every hour. I have put a call in at the doctors office and will see what they suggest . The nurses did show us the neurological tests to do hourly
The thing with brain tumors is that the size isn't as important as the location. The one I had removed was considered to be relatively "small" but was damaging the optic nerve and wrapped around the carotid. I have another small one that is in a more benign location and they would leave that until it caused major symptoms.
Ask the doctor you are seeing Monday for the name of another neurosurgeon to consult. The neurologists can help manage neurological symptoms, but only the neurosurgeon can give an idea about treatment options. If I had gone with the first NS I saw, I would have had a procedure that was twice as complicated as the one I had. Instead of half my head being cut, I would have had the entire length cut, gone home with a lumbar drain, had permanent damage like partial facial paralysis, etc. Instead, I sought other opinions and had none of that. With each doctor I consulted, I asked WHY they would do what they planned. And I asked #2 and #3 why they did not agree with #1's approach. All of these questions helped me learn so much about what I was facing, and helped me to trust the surgeons I chose. And all of the surgeons I consulted did encourage me to seek other opinions to make sure that I was confident in my decision.
Did the hospital or other doctors you consulted send records to the doctor you are seeing Monday? If so, ask this doctor for a copy of your files. They have to give it to you if you ask. It should include all test results sent to them, as well as any correspondences between them.
Yes, I agree, location is key. That is a slightly smaller than a walnut sized tumor? so you have to know where it is and CNS does not tell you much...
The meds have side effects - so keep an eye on that. Do keep a copy of all the records. It is a bit weird to me that they are not giving you more specific information. Get it - keep on top of it and have the social workers help you out as well.
Thank you so much and I am sorry to hear about what all you have gone through . Yes it is in mm. I will for sure ask to see another surgeon because we did find that 1 of the surgeons that we saw in our stay there wanted to do the surgery for a biopsy then because she said it was very concerning since they do not know exactly what it is . I will speak with the doctors on Monday and ask for her files, I just do not know what to do but I want to do what is best for my child ... I was just so very lost while down there. The doctor we see on Monday should have them because the surgeons office said they would send them to the doctor if not I will call the surgeons office and get them . We see them again next week too but I believe I will also schedule an appointment with another surgeon for a consultation as well now that I have heard your story .
Thank you . I will get the records on Monday and hold on to them tight ! My husband and I are wanting answers now but they are saying we will not know more til next month when we do another MRI to see if it has grown because it is in a very risky spot and that is all we are being told but if this is something that can harm her before they do anything about it we want to know . I had cancerous cells when I was 16 and my surgeon told me if they had not been removed he suspected within a year I would have had cancer and it could have spread so I do not want this to happen if this could be it. We love the hospital we was sent to but to be told we have not seen anything quit like this worries us and we do not want to sit on top of it until they realize it is a more serious thing . Don't get me wrong they have us coming almost weekly and they are treating her with steroids and hoping that shrinks it before they go in and that may be the best way to handle it but we worry so much . I don't expect them to go straight in and take it out but I just wonder if something could be done like something to drain it because they told us there was pressure building up that is the reason her head was hurting so much but the steroids have helped but what happens when she stops taking the steroids ? I may be over reacting but we are just very concerned and I am sure it does take time to find out what these things are and if they are dangerous or not and come up with a plan to fix it but as parents its hard to understand . I am just worried also that we spent several days in the critical care unit and then was released with not many more answers than when we first went in but I appreciate everyone helping us on this site now I feel more prepared on what to ask when we see the doctor on Monday.
There are also places you can send her MRI's to for free consultations. I'll try to find that link for you. If this is something that they consider rare, it is likely that some of the tops surgeons in the country may be able to give more insight and may even be eager to take on her case. I'll look for the link now.
I would be leery of the whole steroid thing myself - steroids really are not cures but masks. they can reduce inflammation so unless the tumor is something that is inflammation that requires a short course, well - it is a pretty difficult long term med. I had Cushing's which is too much cortisol aka steroids - it really messes up a body.
You can also contact NIH - www.clinicaltrials.gov - that is also free treatment - see what is going on there.
I'm still keeping your daughter in my prayers! Are you seeing a neuro at Vandy? If so I would recommend Dr. Pinna Garza...he's brilliant.
I have a very rare tumor in a rare place and have been told over and over and over again that the doctors and hospitals I've talked to have never dealt with anything like it..I was fortunate enough to have everything work out to where I have a Skull Base NS at UT Knoxville who is qualified to help me with this tumor. If you find out that it's a Skull Base PLEASE contact NIH of Methodist in Memphis. Not sure where you live, but I'm assuming Memphis wouldn't be too far if you're getting treatment in Nashville.
Thank you we appreciate all of the prayers everyone has sent out to her . She will see Dr. Pearson on October 5th and hopefully we will know what will happen next. She went to the neurologist in Nashville on Sept. 13th but they just adjusted her medication and lowered them some to see if she sleeps less with less medication. She is now homebound and can not attend school but we are hoping things get better after the 5th of October.
She is only getting worse with the head pains and she thinks she sees smoke and other things that are not there. We are counting down til we can see Dr. Pearson Wednesday so only 2 more days . We video taped a spell yesterday where she was hurting so bad in her head begging for the pain to stop and after that she become so nauseous. I will post again after we find more out on Wednesday.
It's been a while since I have last posted but we ended up spending another day in the ICU and then had surgery on November 8th and spent until the 11th in PCICU. We was referred to an oncologist and now are working a treatment plan with him because her tumor is cancer and needs further treatment. We are going next week for more answers and to find out if chemo is something that will work for it bec he says some brain cancers do not respond to chemo . He says he believes hers is in the blastoma family but it will be when the full pathology report comes in until we know for sure and then know how to treat it next. They removed almost all of it and removal of all of it was the plan but the MRI the next day shows a small spot was left. She had a craniotomy done and the dr thought he got it all but he got all he could get to and there is still a spot left behind.
oh my... my heart breaks for you hearing this journey. I hope that she is resting comfortably. Recovery from a craniotomy is long, and expect her to be tired for a very long time. Poor baby. It is good that they removed most of it- it can be dangerous to remove all sometimes and it sounds like they exercised proper caution. Sometimes, microscopic cells are left that they don't know about so a treatment plan may not be formed right away. At least in knowing there is a little left, and having the benefit of a biopsy to know what exactly they are dealing with, they will come up with an immediate plan and hopefully take care of this thing once and for all.
I have heard that about chemo as well. I wonder if any of the other treatments would be possible for her- gamma knife, cyber knife, proton beam, fractionated radiation, etc...
Thank you for taking the time to update... I was thinking of you. Please be sure to take care of yourself too.
Oh gosh...I'm so sorry...as said above the recovery will be long and slow. I'm glad she's getting treated at such a great hospital! It makes such a difference. I will be keeping you both in my thoughts and prayers and saying extra prayers that her recovery goes smooth. XO
Thanks everyone for your kind thoughts and words ... Lexi is doing so good now ... We still see her oncologist and he is the best !!!! they determined it was a glioma but not one like anyone has ever seen ... they said normally it is one kind of glioma but hers has a little of all appearance in cells and minerals so it doesn't have all characteristics of one particular glioma so they are just calling it a glioma but said it was cancer. The tumor is/was studied at John Hopkins hospital so it has taken us a while to get answers but the oncologist told us the other day chemo will be the plan. It has been a long and strange journey but I believe things are getting better. We have been told for the next 5 years we will have a ton of MRI's done every 3 months then from 5-10 years we will do them every 6 months because if it starts growing we need to do more to fight it but if she starts getting sick the way she was before then of course we do a scan much sooner than that but they are trying to do the least possible because she still has to have so many each year due to her condition and each time it sends so much radiation into her little body and she is put to sleep and they say the risks are high for something to go wrong the more times she is put to sleep and has these done but they are necessary. Thank you everyone for keeping a check on us sorry I rarely get on but we are always traveling and seeing doctors.
Thanks for checking in. I do hope that she improves with the chemo. It is a tough treatment and she will have to be careful with her diet and immune system.
"Glioma" refers to the type of tumor that grows from a certain cell - glial cells - and it is cancerous. They have different grades which would be how aggressive the cancer is - so the lower the grade, the slower the growth rate, the higher the grade, the faster the growth. There there are stages - that I think takes into account spread and grade. It is pretty complex.
Take care of yourself too... a long term issue like this is very wearing so make sure that you and the rest of the family gets some support that they need - so counsel, friends (that do not have colds, etc.) to help bring healthy food, help cleaning the house and all can help give you a break.
Thank you. They have told us they don't know much about hers but they do believe it is low grade which we are so thankful for. I did a lot of research on this and it is all very confusing. The oncologist is good with talking to us but it is still foreign to us. They try explaining the different types of Gliomas and what she has and I leave feeling more confused than I did before I go in but the doctors gave us good advice and told me to start bringing a note pad in and write it all down and look it up when I get home . We have been very fortunate to have a small community and everyone is willing to help us and I work at Walmart and have such a great support group there as well. I just wish we knew people who was familiar with this disease. We have bought our brain cancer support bracelets and we wear them as a family and even friends have started buying them and wearing them also. We worry a lot but seem to find comfort in the support we get in person and online . Lexi has a caring bridge page if you would like to check it out ..... www.caringbridge.org/visit/lexifogg
Thanks for letting us know the site! We will be sending kind thoughts and prayers. I have had three family members battle brain tumors and it is not an easy thing.
It does seem overwhelming and hard to understand, but after a while it does start to sink in. In the beginning I used to just save things in a document that I thought were applicable, and read them over and over, and it was like studying, after a while, some of the stuff made sense. Then you learn from others as well.
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