[Robert_325]

Originally Posted by At Sea

So..... I came on this site for support and direction and I received it from so many people it was just unimaginable. The support, the caring the direction…. they just pushed me to seek the right way to handle the pain, the doctors and most importantly my health.

The last post I wrote looks like 06/03/08 and but then RStock2 gave his/her opinion and I got too scared to post anymore. The week after RStock2 posted I got the results of my MRI of the brain and the spine. At a time when I still needed support, I was too afraid to say any more because of what RStock2 said. So now it September 13, 2008, like three months later that my husband and I have been going through this alone because of RStock2’s post.

So here it is. This is what has happened the last three months……. ..

Robert_325 - You were correct that something was really going on and they needed to find out what it was so they could treat me correctly. They found a pinealoma tumor. For the readers who don't know about it - like I didn't......and wish I still didn't .... its pretty much dead center in your brain and depending on which doctor you ask - "inoperable" is used as frequently as “operable”. And TA DA! it effects your Central Nervous System in all kinds of ways, can influence motor skills, pain, confusion, There are four types of pinealomas and none are great to have. There is a 90-95% survival rate on the up side after you go through chemo and radiation and surgery.

The Lyrica has worked liked magic on all the nerve pain I have. My husband doesn't have to help me get out of bed in the morning anymore. Hooray! I still have ALOT of pain in my lower back and I'm still going to the pain specialist that I don't particularly have much faith in (however until I find a new one, I’m stuck with her) I gave her office the actual disc with the MRI images on it and the reports and I have had two office visits since and she still does not have the hard copies in my file, therefore basically she is treating me only for what I tell her and not what the MRI shows.... which is two curves-one on c-spine and one on the t-spine with discs bulging and also the degenerative disc disease which is compressing the nerves. So she continues to give me the steroid shots in my lower back and I'm not supposed to have steroids because it can contribute to bone loss and remember I break bones easily with no trauma. So - basically she doesn't hear me. Nothing new there. I'm taking the hard copies of my reports on Monday when I see the pain specialist so she can treat me for the actual issue, not guessing from what I'm telling her which has not worked that past year. She gave me a prescription for qty of (15) of 7.5 HC 2 x a day as needed to last for 30 days. Oh - and the neuros don't want me to take narcotics for the back pain because it can cause rebound headaches - and when I told my pain specialist this, she said, "well, anything can cause your headache" and gave the script for hydrocodone. I just don't know about this woman. I asked her if there was anything else that she could give me or do for me to not interfere with the migraines or possibly make them worse and also asked if there was a longer acting medication she could give me. She said, "no, not really, this is the only one." I really feel that there has to be more to being a pain specialist than injections and hydrocodone. But perhaps I have no idea what I'm talking about.

At the end of June, I spent four days in the hospital for IV therapy trying to get rid of the intractable migraine I had since March 27th (they said it was just one lllllloooonnngggg migraine-not several) and the different IV meds didn't work at all. It's a long story but after the hospital stay, I had very strange things happen - they don't know what caused it but I lost a lot of my motor skills for about a month and it’s off and on now. For several days, I was also hallucinating which played havoc on my nerves and made me have panic attacks. My memory totally stinks now too. So much for me being a Type A personality! Anyway, I had to relearn how to put food from my hand to my mouth, type, use the computer, the regular home telephone, texting, calling on my cell phone, etc. It’s been a nightmare, like I didn't have anything else to do or think about, right? So I've been off work for since the end of June and have no idea when they will let me go back to work. Still have lots of headaches and migraines too but am on Treximet for it and it seems to help for 90% of the time.

As for the brain tumor, the neuro here where I live doesn't feel comfortable treating me since they are very rare tumors, esp for females. He has transferred my care to a state of the art hospital in the state which I live about 3 ½ hours away. I have seen a neurologist once there so far the first part of August. I am to have another brain MRI this month and they will compare with the 1st one, then I return to the hospital and meet with a neurosurgeon and my neurologist the first week of October. The neurosurgeon heard of my case and asked to personally meet with me. I don't know if I should feel privileged or scare ****less. The neurologist is great that I saw, we (my husband and I) just talked for about an hour and a half and he LISTENED! He came up with a plan to see what and who and what can help me the most and when I call to ask a question, HE CALLS me back - amazing! Not his staff - but him. And he will talk forever to you like you are the most important patient he has.

I have to go for cognitive testing at the end of October to see what’s going on with my motor skills. They don't know why that all happened when I got out of the hospital, it was like having a TIA that lasted for a month. But they said if it was a TIA it would have only lasted a day or two. So they want to see if they can pinpoint the area in the brain (I think) that's messed up - well besides the part with the tumor - lol...... oh, and no one can tell me if the migraines are being caused by the tumor either. I guess we find out later. So I am hoping by the 2nd week of October we will have some definitive answers.

So that's about it. The headache started March 27th and it’s been a long, stressful wait for some answers. I had no idea that my pushing my doctor for all these tests would lead me to this place in my life.

It's scary, it's sad and it's a lonely place to be. I’m so disappointed in the person’s post that contributed entirely to me leaving the forum without all the facts. I really could have used the support of this forum the last three months and only now do I have the courage to come back to let the people who supported me know I’m still here, lonely, discouraged and forgotten, but here none the less. Robert-325, thank you, you are a blessing. I’m so glad you stood your ground with RStock2 and explained further my situation. I look forward to hearing from you and everyone else. God Bless You All.

I am glad to see you back. I wondered what happened to you several times. I always wonder about people who disappear and we never hear another word.

I have been gone for a while from Hurricane Ike damage to our area. No power for almost two weeks. But we will talk soon. Fill me in exactly what is happening as of today if you would. God bless.

[KyleKW]

Perhaps your professional standing/training/experience has you reviewing this site with blinders. I've been reading these threads for months, and have always found that, if you look hard enough, anyone presenting with serious physical/mental symptoms are almost immediately "pushed" in the professional help direction. However, those individuals represent a small percent of folks on this site. Most of us are here because we've decided to turn our lives around, and find it easy to communicate with others who are doing/have done the same. Ultimately, it's up to us, but this site is a great help. Finally, I must comment that the tone of your first post was a bit sophomoric..."is she really at sea"? I probably don't have your level of education, but even so, I figured that her site name represented the helplessness she was feeling at the time of her initial post. You should accept the fact that for some, there are many alternatives for healing.

[At Sea]

I am taking Lyrica now and it has worked wonderful on the "all over body pain." My husband only helps me get out of bed when my back doesn't allow me to do it by myself. I went to the pain specialist and she ended up doing temporary facet injections (8) and my back hurts worse now than before. I've called their office and their is nothing they can do because she is out of town. I'm supposed to go back on October 13th for a follow-up. This is the pain specialist that I don't particularly have much faith in. The MRI shows two curves; one on c-spine and one on the t-spine with discs bulging and also the degenerative disc disease which is compressing the nerves. So she continues to give me the steroid shots in my lower back and I'm not supposed to have steroids because it can contribute to bone loss and remember I break bones easily with no trauma. I have an rx from her now that is qty of (30) of 10 HC 2 x a day as needed to last for 30 days. Oh - and the neuros don't want me to take narcotics for the back pain because it can cause rebound headaches - and when I told my pain specialist this, she said, "well, anything can cause your headache" and gave the script for hydrocodone. I asked her if there was anything else that she could give me or do for me to not interfere with the migraines or possibly make them worse and also asked if there was a longer acting medication she could give me. She said, "no, not really, this is the only one." I really feel that there has to be more to being a pain specialist than injections and hydrocodone. But maybe I don't know what I'm talking about.

They found a pinealoma tumor which is pretty much dead center in your brain and depending on which doctor you ask - "inoperable" is used as frequently as “operable”. And TA DA! it effects your Central Nervous System in all kinds of ways, can influence motor skills, pain, confusion, There are four types of pinealomas and none are great to have. There is a 90-95% survival rate on the up side after you go through chemo and radiation and surgery.

At the end of June, I spent four days in the hospital for IV therapy trying to get rid of the intractable migraine I had since March 27th (they said it was just one lllllloooonnngggg migraine-not several) and the different IV meds didn't work at all. It's a long story but after the hospital stay, I had very strange things happen - they don't know what caused it but I lost a lot of my motor skills for about a month and it’s off and on now. For several days, I was also hallucinating which played havoc on my nerves and made me have panic attacks. My memory totally stinks now too. I had to relearn how to put food from my hand to my mouth, type, use the computer, the regular home telephone, texting, calling on my cell phone, etc. It’s been a nightmare, like I didn't have anything else to do or think about, right? So I've been off work for since the end of June and have no idea when they will let me go back to work. Still have lots of headaches and migraines too but am on Treximet for it and it seems to help for 90% of the time.

As for the brain tumor, the neuro here where I live doesn't feel comfortable treating me since they are very rare tumors, esp for females. He has transferred my care to a state of the art hospital in the state which I live about 3 ½ hours away. I have seen a neurologist once there so far the first part of August. I am to have another brain MRI at the hospital in the next day or so and they said the neurosurgeon will have to be in the room to view the images as I am having the MRI. I never heard of that before, but makes me feel better none the less. They will compare it with the 1st one, then I meet with the two neuros October 2nd.

I have to go for cognitive testing at the end of October to see what’s going on with my motor skills. They don't know why that all happened when I got out of the hospital, it was like having a TIA that lasted for a month. But they said if it was a TIA it would have only lasted a day or two. So they want to see if they can pinpoint the area in the brain (I think) that's messed up - well besides the part with the tumor - lol...... oh, and no one can tell me if the migraines are being caused by the tumor either. So I am hoping by the time we leave the doctors office this week we will have some definitive answers.

So that's about it. The headache started March 27th and it’s been a long, stressful wait for some answers.

[At Sea]

Just wanted to let you know, we traveled to the hospital and I've had blood work done and also my second MRI. Tomorrow is the BIG day where we get answers on whats going on with the brain tumor. We meet with the neurosurgeon first and then the neurologist. I won't be able to post anything until tomorrow evening late to let you know what they say. Just keep us in your prayers. Thanks for all that you do.

[Robert_325]

Originally Posted by At Sea

Just wanted to let you know, we traveled to the hospital and I've had blood work done and also my second MRI. Tomorrow is the BIG day where we get answers on whats going on with the brain tumor. We meet with the neurosurgeon first and then the neurologist. I won't be able to post anything until tomorrow evening late to let you know what they say. Just keep us in your prayers. Thanks for all that you do.

Thanks for the update. I read your last post and was hoping you would give us a little more info today. I will certainly lift you up in prayer. He is the only true healer, can do anything. I realize you know that. It's been such a time you've had with all this. Am happy you posted again, had wondered what happened to you. I will be looking for your post after the drs tomorrow. I know that you are nervous. Try to relax knowing He is with you. We wish you the very best news tomorrow. God bless.

[At Sea]

I had my 2nd MRI on Wednesday and then went to see the neurosurgeon and then the neurologist on Thursday.

The neurosurgeon said that he does see a mass on the MRI..... but NOT to worry about it at this stage. Just as an added precaution he they took some blood to see if their will be any hormone levels in it. If the tumor is a certain type (the bad kind) it will secrete those same hormones and it will show higher levels in my blood.

He did say that he in no way thinks the migraines are coming from the tumor. It was just an incidental finding..... like I had a migraine, then had an MRI and then "Oh, what that's on the MRI" and then we should check that out too. Does that make sense?

So I am to go back on Oct 29th just to see what the hormone levels are. If they are normal, we just wait and do another MRI in 3 months, if no change, another MRI in 6 mos, and then if no change another MRI every year thereafter.

If the hormone levels are high, then we will change the plan at that time.

He said that the only absolute positive way of knowing what kind of mass this is.... is to go in and do a biopsy. But the risks outweigh the benefit because of the location and size of the tumor.

So we went to see the neurologist. This guy is so nice. Well so was the surgeon. He spent another hour to hour and a half with us in the room. Talking, writing, examining, asking all kinds of questions on the confusion, pain levels, driving, etc, mood, medications and treatment of the pain specialist I go to in Lubbock.

Here is part of another post I wrote:

"I have major chronic pain and several health issues at the moment. Brain tumor, migraines, back pain with lots of spasms. I have been going to a pain specialist in Lubbock who gives me HC 10 or 7.5 mg 2 x per day and also facet injections, epidural steroid injections and nerve burning. I have been going to her for over a year with no relief. The last time I went was 3 weeks ago and she did 8 facet injections in lumbar and now my entire back has been spasming to where I can't bend, twist, reach or stand straight up without my back spasming. I called their office and they said to take an extra HC during the day. I did that last week and with no relief."

"Then it was time to go to the neurologist who treats me for the migraines. He noticed how bad I was in my back and asked me the regimen the pain specialist was doing."

"I told him all the above and he offered to treat me for the back pain also. He took me off Flexeril (5 mg that I take 3 x per day) and put me on Tizanidine 4 mg (directions are to take 1/2 to 1 tablet 2 x per day and then take 1 or 2 tablets at bedtime)"

"He gave me Suboxone (8 mg-2mg tablet R-B) Take 1/2 tablet under tongue 2 x per day for pain"

I've been on this forum alot and haven't seen anything about Suboxone being given for pain so I asked a question in another thread.

"The doctor did say that he was using it off label and their is controversy over giving it for pain - but he feels that the lortabs aren't the right medicine for my pain level, and that the injections she is giving me obviously isn't the entire problem with my back and she seems to be "drugging it" or "shooting it" without trying to go outside the box to help me get pain under control"

"He said that Suboxone is prescribed at a lower dosage to be used for peoples addiction coming off of drugs. And that Suboxone given at twice the amount has been shown to give really good pain relief."

"He does not feel that I'm addicted to the other pain medicine, just that I have been off and on it for so long (since 2002) that it isn't working any longer and I'm having too much break through pain."

I took my first dose at 2 pm so now I'm just waiting to see if it helps.

The neurologist also gave me another doctor's name in Dallas and said for me to research him and see if I would like to meet with him. He feels that he would be a great specialist to handle my pain management since I have so many different elements regarding the pain. And also that he would also be closer travel wise. He said this was just another option for us, but he would be happy to continue the treatment for us. The doctor in Dallas apparently uses a variety of treatments for pain, and combinations for the patients most benefit. He also says that he done great breakthrough medicine with IV treatments and is on top of all the new chronic pain methods/treatments.

He has me off work until November 1st but he said that could change when I go back for results. I also have cognitive testing on October 29th that lasts for four hours. He said that testing will tell us if their is an issue with my brain or if it is possibly stemming from all the medications they gave me in the hospital in June. (See earlier post for details on what happened when I was released from the hospital) It really sucked. I still have confusion, balance, memory loss issues and still trying to relearn things.

I go back to him October 28th for a follow-up to see how it's all working out with the new medicines and see how I am feeling.

So that's where we are now. Still not a "for sure" what the future holds and what will happen in the long run. I'll feel better about it at the end of October when we go back for the blood test results.

Sorry I write so much, people tell me I should write a books since I have so much to say. I just feel that the more detailed I write, the more honest I am with myself and this whole situation and it helps to pour things down on paper.

I still feel very alone even though I have a great support system here at home. Not very encouraged about the whole thing even though I felt the appointments went very well.

Please feel free to write back with any support and encouragement for me. And if anyone has any questions or just ANYTHING please write.

Thanks for listening and God Bless You All.

[melinda7.5]

Hi At Sea
I just wanted you to know that you are in my prayers.
melinda