Natuurlijk hou ik jullie op de hoogte van hoe het mij vergaat na de Liberation Treatment.
Het is goed om te beseffen dat niet iedereen zo gelukkig is dat er positieve veranderingen zijn direct na de behandeling. Als je teveel verwacht dat het iets positiefs voor je gaat opleveren, dan kan die teleurstelling best groot zijn.
Besef ook dat de behandeling nog experimenteel is en dat het geen ABC'tje is dat je er wat mee opschiet. Ook ik ga hard achteruit en aangezien er voor mij geen medicijnen zijn om te remmen (eventueel chemo en dat zal ik zeker niet snel overwegen vanwege de vele bijwerkingen) dus dit was voor mij de enige optie om te proberen de progressie te remmen.
Het is (naar mijn idee) niet reëel om te verwachten dat je direct na de behandeling verbeteringen merkt (de schade die in je hersenen en/of ruggengraat zit verdwijnt niet instant door de behandeling). Mocht je direct verbeteringen merken dan zou dat eigenlijk alleen aan de verbeterde bloedstromen kunnen liggen.
Ik hoop met jou
dat ik de aankomende maanden kan melden dat ik heb gemerkt dat ik er iets mee op ben geschoten maar dat is nu nog zeker niet het geval.
Zou ik de behandeling weer doen met wat ik nu weet? Absoluut want dit is een kans op een beter leven (quality of life) en die laat ik niet graag liggen!
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Ik kwam op thisisms deze post tegen waarvan ik denk dat het goed is om te lezen:
Tell me people what is a cure? what is the definition? what does it mean to you? is it complete remission? is it effective treatment in avoiding relapse? is it regaining some function? its different to everyone.
to me a cure means today i have MS and tomorrow its gone and im functioning 100%. thats a cure.
Ok heres the deal. I was liberated. I went in March 3. I worked may ass off for 6 months to get tested and treated. Lots of highs and lows. Drove my wife insane.(cant believe she is still with me!)thank God for her.
Dual bilateral stenosis. Thats what they told me. Best IR in the country in my opinion. Man i was worked up. On the table my heartbeat pulse was like 123 bpm. The thought of how when its all over ill be walking quickly, running around the yard, all the shit that i have mourned, the thought was so overwhelming.
That night i got back to the Hotel. Couldnt wait until the next morning. I had some new heat in my feet i never felt. Awesome.
BAck home a few days later. Man i was beat up. Mentally more than physically. Week later i battled the warfarin drug. (war it is and fairin it aint) Dizzy, tired, beat up i kept anticipating "the cure" we are all looking for. Somehow managed to get a UTI that kicked my ass more. Oh well figured it will pass. Never had one in my life.
Look hate me if you will. I just want people to know I have MS and it sucks. I want to be "cured" too. I have 4 kids, a business, an amazing wife, a great family. I could afford the treatment but Cured i am not. Just be careful. I know we want relief. Im having an attack of vertigo so bad i did 3 days of shitumedrol. Im not happy about it, but its reality.
People are mortgaging homes, jacking up credit cards, and believe me i understand, but i think its only right that somebody at very least warns that just maybe something may not happen if you get liberated. I just paid american express 5 grand for hotel and meals and flights, and i havent even got my liberation bill yet. But that is what i chose to do. If you choose to do the same. Great. Be the best you can and go for it. But dont get yourself mentally where i did. And dont go there if its going to set you back further financially or mentally or symptomatically. I have put myself into a relapse because i got so worked up.
Maybe i restenosed, maybe my veins just suck, who the hell knows? The thing is i care about people. That is the bottom line. Thats why i went in for the procedure. I care about you and your wife and your husband and your friends and i want you to feel better.
Ive been good to people my whole life. That i feel we all share in this forum. But PLEASE be careful. Dont make things worse for yourself.
Will i do it again. Hell ya i will. Ill do it until the cows come out. I look forward to the day when procedures are written specifically for CCSVI and protocols and equipment and the works. PLEASE i know how hard everyone is working. Dont give up and keep pressing neuros and the like. THis forum is amazing and the people that have fought for the things in it are who i credit my opportunity to get the procedure to.
Sure some will get relief, some will get scared, some will get overwhelmed and some so focused that they will miss the presence of their own kids growing up and telling stories about school. JUSt PLEASE BE CAREFUL PEOPLE. I dont want to be the gloom and doomer and i hope i am not coming off that way, but i am a realist and i want you all to move forward from this experience, not backwards.
The theory has been proven. Zamboni has showed us that. But lets face it this disease is as elusive as a buck in the woods. It doesnt make any sense. Why am i using a cane today for the first time since diagnosis and my 42 birthday is tomorrow? Why are my jugular veins 75% closed? why why,why,why,why,why?
I love reading how people are doing awesome after liberation. It gives me goosebumps. Im not. Its just the way it is. I feel someone has to be the fall guy. Hate me or respect me. I care about people. Its my pride and my demise.
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