Replies to This Discussion

Permalink Reply by Misti McCarley on February 8, 2013 at 6:22pm

I have tried to respond to this in length twice and my computer keeps killing...so I guess I'll keep it short. I have diagnosed with a falx meningioma 2.1cmx2.1cmx2.1cm on the right at the midline with some left side growth as well. I have severe agitation and agression, can't handle bright light or noise. I am constantly nauseated, drop things all of the time, am clumsy with left leg weakness and atrophy and a headache that is excruciating and unrelenting. I have lost the brain-mouth barrier and cuss without knowing it until the foul words (if they are words) are already out of my mouth. I have a large spinal tumor too, but these things started showing up initially with the headache about 6 months ago. I have been dealing with the spine for a year and a half and will most definitely become paralysis in some form at some time because it is too big and caught up in my conus to remove. Anyway-I would encourage you to get a support system of some kind of some people that you can trust that would be able and willing to help you with your child. I have two children and am no weakling. (I have also suffered years of abuse and from bi-polar disorder since a young age). I don't want to scare you or sound grim, but I have to have help with my children. My situation is also different due to spinal tumor, but the brain issue is causing severe problems of its own...Seizures of the mylonic and sensory kind and I can't be in public or drive for long. I could not have my children in my care and them still have a normal life without my church family helping me with extra curricular activities, hospitalizations (caring for my kids and getting them to school). I am also going through a divorce and I would suggest that you keep your dealings to a minimum if they are stressful encounters. Day by Day, be good to yourself. Hope this helps you feel better that you are not alone...

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Permalink Reply by Alice B. Guarino on February 10, 2013 at 9:31am

I am four months post-op craniotomy of a right parietal lobe meningioma. My symptoms included walking into doorways all day in work one day, and then noticing some irregularities in the gym the following week. My Primary did an MRI and they found a plum-sized tumor.

I would suggest that you go back to your neurosurgeon with your new symptoms. I was told that although my surgery was not considered an emergency, since I was experiencing symptoms, the tumor should come out. The symptoms were caused by swelling of the brain tissue around the tumor. It had been there a long time.

I think we minimize our symptoms, and think that they are not a big deal, when in fact they are related to the tumor, and come on so insidiously that we don't even realize it. My advice would be to be your own advocate and take charge of your treatment plan.You may want to consider a second opinion also, if you haven't already. I saw two neurosurgeons and they agreed on the treatment plan. If your quality of life is affected there may be other alternatives avaiable. It never hurts to seek additional opinions.

I am fortunate and blessed to be doing really well four months out. My energy level is not back to where it was yet, but I have not had much in the way of motor or cognitive deficits. I feel very lucky.

Good luck and hope all goes well.

Alice

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Permalink Reply by Debbie Zardus on February 10, 2013 at 12:41pm

Hi, Alice!

Was your tumor in a bad location or easily reached? I saw 2 neurosurgeons and both would not recommend surgery for me now because of its location. They are afraid that more damage could be done with surgery. Right now I only have a hearing loss in my left ear. Are you from NJ? Since you are doing so well post-op (very happy for you), would you share the name of your neurosurgeon with us? I would still like to get another opinion. Thanks!

Alice B. Guarino said:

I am four months post-op craniotomy of a right parietal lobe meningioma. My symptoms included walking into doorways all day in work one day, and then noticing some irregularities in the gym the following week. My Primary did an MRI and they found a plum-sized tumor.

I would suggest that you go back to your neurosurgeon with your new symptoms. I was told that although my surgery was not considered an emergency, since I was experiencing symptoms, the tumor should come out. The symptoms were caused by swelling of the brain tissue around the tumor. It had been there a long time.

I think we minimize our symptoms, and think that they are not a big deal, when in fact they are related to the tumor, and come on so insidiously that we don't even realize it. My advice would be to be your own advocate and take charge of your treatment plan.You may want to consider a second opinion also, if you haven't already. I saw two neurosurgeons and they agreed on the treatment plan. If your quality of life is affected there may be other alternatives avaiable. It never hurts to seek additional opinions.

I am fortunate and blessed to be doing really well four months out. My energy level is not back to where it was yet, but I have not had much in the way of motor or cognitive deficits. I feel very lucky.

Good luck and hope all goes well.

Alice

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Permalink Reply by Alice B. Guarino on February 10, 2013 at 1:41pm

Hi Debbie,

I apologize, I did not see your previous posts.Location is such a big variable in performing surgery, I know.  Yes, I was fortunate in that there was easy access to the site of the tumor, although there was quite a bit of vascular surgery done since it had been there for quite some time. I had pre-op angiograms the day before my surgery for that. 

I really highly recommend my neurosurgeon out of Thomas Jefferson University Hospital in Philadelphia. His name is Kevin Judy. His practice is well-run with nurse practitioners. He is a little curt at first, but warms up after awhile. I wouldn't go to anyone one else. 

Good luck with everything and I 'll stay in touch. My prayers are with you.

Alice

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Permalink Reply by Karolin on February 10, 2013 at 6:44pm

Thank you very much everyone for all this. It seems that the Depakote has caused nire head aches and there is no swelling around my benign tumor for now. The psychiatrist I went to put me on Melatonin and Clonazepam. Just a very low dosage which should help with my sleep disturbance. In addition he asked me to stop taking Depakote for now and will talk to my Neurosurgant. He also advise to keep peaceful as much as I can and let my divorce lawyer take charge. My Neurosurgant has been highly recommended and I do believe I am in good hands. They believe that my stress is bringing on these various symptoms but I still have the pressure on my right side of the head and irritable because of it. I will see how this week goes. I have one friend only here in Cumming, GA and waiting to return to Northern CA where I have a larger circle of support. My neurosurgantwould like to avoid surgery since there is no swelling around the tumor. But did any of you ever had surgery without the swelling? I am concerned about being able to handle my life as it is now. Nothing used to be too much for me and now it seems. The issue is if I have surgery at the end..my husband might get more visitation rights/custody and he is a functional alcoholic. I am afraid to exposing our daughter to this. So I am trying to keep it together for my daughter  as much as I can without releasing to him that I have this condition. Also I am working fulltime, she is the love of my life and did not deserve a sick mother. I have been independent all my life and financially responsible for myself and fully financially responsible for my daughter. However it is always good to get a 2nd opinion. Does any of you have a recommendation for a good neurosurgant in the Atlanta area. Mine is Dr. Barnett and she has been very supportive.

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Permalink Reply by Ann Manzi on February 13, 2013 at 7:04pm

Karolin, Hi. It seems that you have so many things to stress about for which I am sorry. I think as far as your daughter, you might want to see a lawyer about preparing for someone else having temporary guardianship if necessary. We are all similar, but have tumors that  have different locations, size, and we are in different parts of our journey to recovery. I didn't have any symtoms till I awoke with slurred speech and my right side dragging. It was my first seizure and had a emergency craniotomy and then radiation. I was told that I should have had symptoms; falling, fainting, dizziness,headaches, and possible change in personality. I never experienced any previously.These are just a few, just like the deficits that may occur after surgery. If you are experiencing  seizures, you should see a epilectic specialist for treatment and medicine. Your ns should give you the best info, but if you are not satisfied, I suggest finding another. If it is a wait and see option, just make sure you see your ns every so often. I live from one mri to the next; which I think most of us experience.  Please take care of yourself, and hope peace for you and enjoy your daughter. ann manzi   

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Permalink Reply by Misti McCarley on February 13, 2013 at 8:42pm

Personally, I don't believe temporary custody with anyone would be a good idea, and since she is in the middle of divorce with husband might not be possible. But, again, trustworthy people...as mentioned moving closer to family that would be willing to help you with your child while still allowing you the satisfaction and knowledge that you are the mommy and you are not going anywhere. You will need help if you need surgery, but just letting your child bunk and then you recuperating with the same family member would be ideal. You can make calls and write letters to your child's physician's/childcare providers letting them know that it is ok for so and so to bring child to appts or pick take and pick up from child care or whatever. I would never give anyone temporary custody of my child. Some people get attached and get stingy (perhaps I'm paranoid), I also worked for DSS for several years and know how people can be in these situations. You want to make yourself present as much as possible. Also, with a strong support system a court would likely see more in your favor than lets say your "functioning alcoholic" husband who might have no one but his job and his libation of choice. I am also divorcing a "functioning alcoholic"--they all think they are functioning, but unfortunately it is only at their job and the rest of their life is ruins. So, don't give him the credit of adding functioning to his alcoholism. It minimalizes it and in your writing it seems as though you have placed him a little higher than you on the pole because you are sick. You don't go to the store everyday and pick out a brain tumor, now him on the other hand, he has a choice...I am proud of you. Sorry for the tyraid.

Misti

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Permalink Reply by Karolin on February 14, 2013 at 10:41am

Thank You for your good advice. My plan is moving to CA close to my friends around mid year and toughen it out until then.

If I need surgery then at least I have responsible friends who can take care of her. My family is in Germany and my parents don't speak English. Going back is not an option and having them here is also not very helpful. I think it would be a good thing to ensure that my daughter is covered while something happens to me in GA. I certainly hope not but I think it would make me more peaceful. I have a friend here who might be willing to do this but I wouldn't know if my ex-husband would be fighting me on this. His alcoholism is very difficult to proove since he is staying and drinking at home.

So all in all I am trying to avoid surgery for now and my second opinion will be done in California around June/July. Until then I will do everything I can to keep the stress away and hope that the seizure will not come since there is no swelling around the brain tissue. Are any of you saying that you had symptoms without the swelling around the tumor? I seem to have no swelling but a few symptoms like taste changed, irritability, pressure on the right side of head. My psychiatrist also recommended not to work out for now since this brought on the symptoms. Could it be that workourt builds up pressure in the brain? I guess I do need a second opinion just by reading my email again.

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Permalink Reply by Debbie Zardus on February 14, 2013 at 2:13pm

Hi, Alice

I didn't see your reply to me. Sometimes this site is confusing. Sometimes you don't really know exactly where to reply. Thanks for the info. Do you know of Dr. John Lee in Philly? He is with University of PA Hospital. I saw him and he just wants to do a wait and see response to compare MRIs. Thanks.

Debbie

Alice B. Guarino said:

Hi Debbie,

I apologize, I did not see your previous posts.Location is such a big variable in performing surgery, I know.  Yes, I was fortunate in that there was easy access to the site of the tumor, although there was quite a bit of vascular surgery done since it had been there for quite some time. I had pre-op angiograms the day before my surgery for that. 

I really highly recommend my neurosurgeon out of Thomas Jefferson University Hospital in Philadelphia. His name is Kevin Judy. His practice is well-run with nurse practitioners. He is a little curt at first, but warms up after awhile. I wouldn't go to anyone one else. 

Good luck with everything and I 'll stay in touch. My prayers are with you.

Alice

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Permalink Reply by Misti McCarley on February 15, 2013 at 7:21am

I do not have edema or any type of swelling around the tumor, ...for the fun of it,...aber alles nichts so gut. Mir tut kopf weh sehr schlecht! Alles Gute! 

Misti

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Permalink Reply by Karolin on February 15, 2013 at 8:08pm

Liebe Misti, Dein deutsch ist nicht schlecht? Want to practice your German..haha!

So let me get this right..You did not have any type of swelling around the tumor but you have all these symptoms you are describing. I am very sorry to hear that. How did you know that you had a spinal tumor or how did you find out about it? I will be trying out an antidepressant today. I am such a lightweight with medication that I usually do everything to refuse any type of antidepressant but if it will make me less aggressive than it is fine. Unfortunately the anti seizure medication increased my headaches enormously but the Dr originally described it for anger management. I wonder at this point if it would be better just to remove but my doctor advised me to only remove when it grows and when I have a set circle of support around me to take care of my daughter. She is trying to avoid any custody issues for me with my ex since she believes I am functioning fine. I still have my job which lets me work from home and I can still drive. So from that aspect I am doing very well. On a holistic level I am trying to shrink that darn thing by taking Zyflamend. It is a natural antiinflammatory. I have taken it for 2 weeks and don't see any results but I was advised to take it at least for 1 months. Also I am taken 1 TSP fishoil per day. Lets see what that will do. I will also try to get in contact with a Naturpathic Doctor to see if there is anything else I could try. Have you tried any kind of natural medication which has helped you?

Thank You very much for your advice!

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Permalink Reply by Karolin on February 26, 2013 at 12:15pm

Oh Misti. I am so sorry for the pain you are going through. I am just now checking my email. It is terrible what you are going through. Wirklich schrecklich. Here is my phone # 770-888-4340. I am on Celexa, which is an anti depressant and just at the beginning. The pressure in my right side of my forehead is not as strong anymore but it is still there. I still have to wait for the antidepressant to kick in fully so I am giving it a chance. So far so good. My prayers are with you. Love and lots of healing thoughts Karolina

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