Hi I am kind of new here... I figure I will introduce myself.... I am Monica and I live in the state of Michigan. I really dong know where I belong. I have many issues. anyways here it goes...
My husband lost his job in January of 08 After not finding anything for a few months he ventured out of our small town. So we relocated... I started over with new doctors. IT has been a roller coaster ever since. I am pissed that the doctors back home didnt want to look Passed My Depression and Anxiety to see that something is really wrong, they always say I have White coat syndrome OR have anxiety. That would be my diagnosis and they would send me on my way. Since the Move I have been to 10 different doctors. I started at a new pain clinic down here and she saw alot of red flags. I have never felt good. I started at the Pain clinic rite away upon moving down here. She noticed that somthing was wrong I was staggering (like I was drunk) studdering ect... She asked if I have ever had a MRI of my brain, I said "No" (that is how much my doctors didnt pay attention up in my town). She said "how could they NOT, u are full of symptoms". Anyways she ordered my first MRI of my brain. She looked at my MRI of my lower back (it was real bad) and for the first time I got real medication (I was on only tylenol, IT was nice to be taken seriously) and I came back a few weeks later...
She told me what the MRI report was and said I needed to go to a neuroligist They are suspecting M.S. and or hydrocephalus. (I WAS NOT CRAZY AFTER ALL) I started bawling.... it was a relief and I was very scared. So I met with the neuro doc a couple of weeks later. I bawled the whole time at that appointment. They were EXTREMELY thourough with my exam and Asked TONS of questions (writing every thing down that I was saying) I was just spilling my guts all over the place cause sombody was finally listening and I had ALOT to say. After the exam she wanted to show me on the MRI what is going on. She said "you are full of lesions" So she ran me through 6 months of testing in 2 weeks, Because she knew and wanted to get statrted on treatments...spinal tap, (with the radioactive dye and had to come back daily for CT scans of my brain) sleep study with a eeg (she orderd this because I was saying like wierd flutters and my brain and mouth would do this wierd thing (oh and btw i am having seisures too, I seisured all nite) ekg and a few other tests. But the spinal fluid was positive and with the lesions it is pretty official..I have M.S. and possibly hydrocephalus and will retest somtime. She thinks I have had MS over 20 years.
Symptoms: Chronic pain, forgetfulness and other cognitive issues, speech issues, twitchy, tremors, blurry vision, I see things in my eyes so it makes it hard to drive, sensitive to heat, feel lost and alone, even in a crowd, fatigue all the time, numbness and pins and needles, depression, Emotional (all over the board) problems with walking, (unstable) dizzyness, Spasicity.
We started Treatment the traditional treatment where they give u Solumedrol (iv steriods) for 5 days. I got to day 3 and was halucinating My skin was crawling and the lesions were exploding in my head and attacking me. I had a hard time breathing and I was crying all day long for no reason. So she stopped that. I got it under control about 2-3 weeks later. Went back to her she said I was this close to having u admitted for psychosis. (scary). Then we decided to try I.V.I.G. ($25,000 med thank god my insurance paid for that) and after day 2 I was having a reaction to that. MY head felt like it was splitting in 2 and I was vomiting had a fever and the pain was through the roof. So they started me on the copaxone I did eventually go into remission but it is hell.. I didnt realize that I had bad times and good times. That is M.S. I didnt even know it. So we worked on the depression and the weepyness.
Then she told me "its time to fix the back" (I have one disc gone, DDD, and spinal stenosis)So she sent me to a neurosurgeon I was in his office with my hubby (wonderful hubby) for maybe 20 mins. I have already done everything he would have suggested (pt been there 6 times, OT been there several times, acupuncture, chiropractor, traction, aqua therapy and injections.... it was all bandaids) After all that Terry and I said. He said I need to have surgery. So on January 14th 09 (about the same time my hubby was let go the year before) I had back surgery. They did a fusion at the L-1 S-5 region and I asked him to look at my S-I joint too that ended up being the bigger surgery I was terrified..... I called the doctor office many times in tears and panicky asking questions. So as soon as they had a cancelation they decided to call me first because I was scared (my initial appointment was feb 25) Thank God....and the nurses were sooo good they took great care of me and tried to handle my fears gingerly. (one of the things I was afraid of being in the O.R.it is cold and scary so she knocked me out before we were in there. I am greatful for that. So I had the surgery... the dreaded fusion done. L-5, S-1 Spinal fusion and S-I fusion. It was major surgery and the pain was very very bad the first week But they managed it very well after the first 2 days (I was writhing in pain) the hospital kept me very sedated cause they had to roll me every hour for the first week so I dont remember much of the first week except when the pain was bad. The S-I fusion ended up being the more important surgery because it was only attached by one ligament and just there. He said he dont know even how I was walking. So the second week they had me in a therapy ward part of the hospital to help manage my pain and start therapy. And now I am in home therapy. I am still on fentanyl patches and Morphine but I am doing good and able to walk without much pain.
I dont know why I am obsessed with this. Do u guys know if there is somthing that they give u to "forget" after surgery? i dont even remember eating, I was doing therapy, I dont remember walking, I do remember some of the movements because it was so painful, I even recommended to sit in a chair to be more comfortable, I dont remember that. My family came every day to help me eat, I moved 3 times to different rooms. I dont remember that. I moved to a totaly different facility in a van, (to the therapy building) I dont remember that. I did remember at the thearpy building a lil bit. But it took days to start knowing where I was,It is wierd dreaded fusion done. And as of rite now I am 2 and a half weeks out from L-5, S-1 Spinal fusion and S-I fusion. It was major surgery and the pain is very very bad the first week But they managed it very well at the hospital kept me very sedated cause they had to roll me every hour for the first week so I dont remember much of the first week except when the pain was bad. The S-I fusion ended up being the more important surgery because it was completely disconnected and just there. He said he dont know even how I was walking. So the second week they had me in a therapy ward part of the hospital to help manage my pain and start therapy. And now I am in home therapy. I am still on fentanyl patches and Morphine but I am doing good and able to walk without much pain. Thank you for these videos it has helped me to make this very crucial decision. I did notice Immediatly that the numbness and pain went away in my legs and bowel and bladder function has DREMATICALLY improved. I would do it again in a heart beat. So far it has been very worth it.
I want to Thank Several People J, Jeanjay, Bubblegum, ernurse, wahini, tamtam, brokenlady, (I know there are others forgive me for not remembering), and this youtube video
IN case u are curious to want to know what meds I am on here is the list....
Meds,Lamictal 100 mg 2x a day For seisures and
bipolar, Lyrica 50 mg 1 in Am 2 in Pm. Nerve pain, Buspar 5 mg 4x a day Anxiety, Zegrid 40 mg 1x a day heartburn.... gerd, Enalapril mal. 20 mg 1 pm blood pressure, hctz 12.5 1 in pm. blood pressure, Cymbalta 60 mg 2 x day depression , clonidine 0.1 2 x day high blood pressure, Morphine Sulfa15 mg prn every 6-8 hrs. chronic pain, flexeril 10 mg every 8hrs prn, Fentanyl 50mcg patch every 2 days,miralax 1 x a day IBS ducolax or senecot daily , milk of mag as needed stool soft 3 times a day allergy shots, copaxone daily injection fighting MS.