7 Months Post OP- Follow Up RESULTS!!!!!! (:

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7 Months Post OP- Follow Up RESULTS!!!!!! (:

Postby giulie » Mon Jun 14, 2010 11:06 pm

Hi Everyone!!!!! I wrote my story if someone wants to know what I experienced, If you have the time please take a chance to read it.. If you don't have extra time to spare the first three paragraphs in color are the result to my 7 month POST OP RESULTS!!!
When I was dealing with the whole in search of the right DR for me, I had all the family support but still I felt lonely because I didn't have this site and I thought I was the only "odd" one out there, but now I know I am not(:

This has been a life changing experience, when I first found out I had SM (Syringhydromyelia) and CHIARI I was in denial but with great help from my family I was able to face this with a positive attitude. I hope to one day meet other SM patients and learn about their stories and share mine (in person). Fortunately I found this site to connect with others like me, for which I am very thankful.
Many people don't understand what we are feeling , the pain, the aches, the insecurities, but please if you get the chance to read my story know that you are not alone, and please do not hesitate to write me for advice or anything.

Why Me? is the most common question people ask themselves when they are diagnosed with a disease or in our case a rare condition... I never asked myself that, I(I thought it can happen to anyone)
I always asked What am I supposed to do with this? I was supposed to face it and help others in the best way I can... Patience, Faith and a positive attitude....

Tomorrow will be 7 months from my Cervical Spinal Decompression. I got an MRI done last week, and took my results to Dr Zambrano today... The results read favorable evolution in my Syringhydromyelia...
It has reduced in diameter and extension. I am so happy with the outcome of the surgery...
I asked my DR, so what's the next step to follow. He replied, "None, just LIVE YOUR LIFE".


I am so happy today! Tomorrow will be 7 months from my decompression...
Last Year I was diagnosed with SM and Chiari... My SM is referred to as Syringhidromyelia..

My symptom's were mainly in my left hand and arm... I started to feel less the difference between cold and hot, and my hand lost a lot of strength... I thought it was Arthritis... This was all going on while I was inn school studying design in NYC when I was 20. Many of my work consisted with creating things so this was extremely uncomfortable but more when I wasn't even sure what it was. I started treating it as Arthritis, took many medicine but nothing changed... I went to several Doctors in the USA but no one found anything alarming... For several years I kept treating it as arthritis..
Until last year when I came to Peru, South America to visit and I told a close friend of the family who is a doctor.... He studied my case and suggested I go see a Traumatologist.. The Traumatologist found that this was a case to be seen by a Neurologist due to the aspect of my hand...
My left hand had lost volume and had atrophy... So I went to see a Neurologist referred by the Traumatologist. This was just last April when I was 25... That was the first time I heard the term Syringomyelia and MRI... He didn't want to get ahead of himself so he sent me to have an MRI..
I came back with the results and he spoke about a surgery, a drainage that would have to be done by a NeuroSurgeon. He spoke about it lightly so I didn't think it was something too big... But later on I would find out the depth of what it implied... He also spoke about treatment with medicine and physical therapy which would be his recommendation until the next follow up... He wanted me to get another MRI in 3 months to see if the SM stayed at its same length or grew...
I started taking medicine and went to regular physical therapy session ...
My problem was always my hand, it was losing strength, sensitivity and volume..
At the time I had to fly back to the US so I stopped my physical therapy sessions and went on with my life as if everything was okay....
I was suppose to follow up with him in May but I didn't return to Peru until July... In July I got a new MRI and took it to a family Doctor, because the Neurosurgeon I had seen was away on a Medical Cogress..
This Family friend that I consider an uncle started studying my case... And this is where I started to learn about my condition. When He explained to me the rarity of this condition and the consequences it may have I was devastated, I didn't understand how this could be happening to me.. I can still remember how I sobbed in fear when I was sitting in his office... It was horrifying... Luckily I had my parents and my boyfriend there so I was somewhat relieved that they were also being taught on what SM is and what it can evolve in.
My uncle asked me to leave the room and he discussed the case with my parents...
MY SM extended, it had grown in a matter of 4 months, this meant surgery was the only option... He referred me to one of the best known surgeons in Peru...

You may be asking yourself Why didn't I go back to the USA, (my birth country, I am a NYC native) and get myself treated?? I figured I would take advantage and get as many opinions as I could before jumping to Plan B which was the US...

It's obvious that this type of surgery and MRI's are triple what they cost here so that was another advantage I had, plus it doesn't matter what country you're in SM is a rare condition and DR's are lucky to come across cases like ours.
But at the end, my mother always said " Money is not an issue when it comes to your well-being"... She repeatedly said, "If we have to go the tip of the mountain to find the right DR we will"

How would I know what DR would be right??
My main thing was to find a Doctor I felt comfortable with.. Based on his experience, background, number of OP'S in SM, lastly I thought to myself I'll know when he's the one.... It was my choice and my parents always made that clear, obviously their input was important to me..

The idea was to get as many opinions here In Peru, and if none felt right going back to the US was the next step.. Find a Doctor I felt comfortable with..

After that day I started visiting every well-known Neurosurgeon in the country... Luckily I went with the family friend, my "uncle" who is a Doctor and whom I mentioned earlier in this story...
Since there was a lot of medical terminology in the conversations he was a great help...

I got different diagnosis'.. The first Dr I went to thought I shouldn't get the OP, he recommended me to continue with medicine and physical therapy.. He had seen only 7 cases like mine in his whole 40 years of practice... The only problem I found was I felt he was out of date with the modern world, he was 77 and there was no way I would let myself get surgery from someone that may not have the same pulse he had when he was in his 40's... Either way he said no to an OP but would refer my case to his nephew in Madrid... But what he was very clear about and maybe this was the main reason he was opposed to surgery, Not everyone shows improvement, many patients could get worse.... He thought I was too young to take the risk...

The diagnosis' after him were many.. Most Neurosurgeons confirmed that surgery was needed to stop this from growing... The more compressed my nerves where the less my body would start feeling or moving... Many suggested I should still get more opinions.. They also said it wasn't something I needed to get operated right away, like the next day but in the next 6 months it was recommended.
One thing I never knew about SM before I learned about it, was the loss of sensitivity.. I remember when I was younger I could resist really hot water and little did I know it was SM, I just thought I was 'cool'...

The harshest diagnose I can recall was..." You need surgery, not to "fix" this but to prevent it from spreading, If not your future will be in a wheelchair"...
Basically if I didn't get this surgery I would keep on losing strength and sensibility until I would become paralyzed...

I must of seen about 15 Neurosurgeons in the following 4 months..
My life was dedicated to research on SM and searching New Doctors. Learning everything I could about this rare condition was a great way to help me cope. I was told the best way to defeat your enemy was to study it, to know it and that is exactly what I did. I told my closest family about this new discovery and their support helped me greatly. My family back in the states were also researching SM, Doctors, Medicine, and Hospitals.
During this period I became more in contact with spirituality, I started going to mass, I prayed like no one can imagine, I went to healing masses... I even went to shaman's. You have no idea the things I did. My mother who was with me every day told me that sometimes you just have to believe in something. And I started too, I believed I would be okay and I had faith I would find the right doctor for me.

There were many articles on the internet that scared the hell out of me, so I would freak out from time to time but once my spirit was up I stopped reading about SM and just focused on me, my case, my diagnose and my continuos search for the right DR.

After noticing that surgery was the solution I knew I accepted that it would happen...

I was fortunate to meet many Doctor's, I think when something as life changing as SM occurs the more opinions the better... Unfortunately I didn't know about this site.. I wanted to meet someone like me and just know I wasn't alone, but I never did and I've never met anyone inn person who has gone through this... There was only one time that I had a meet with a Neurosurgeon who had another SM case of a boy who was 25, and I felt some type of comfort knowing we aren't alone.... All I know is that I would of done anything to read someone else's story before going through OP....

My uncle had me meet with Neurosurgeons from the hospital he worked in, because he heard very good things about a woman doctor, a friend of his son from Med School..
The Neurosurgeons took my case to an International Medical congress held in Lima with Neurosurgeons from all over the world...
They suggested surgery.. One of the Neurosurgeons that worked at this hospital caught my eye, because she was a woman... I guess I figured she might be a mother and I felt some type of connection, cause I was a daughter.... (???) She was also the reason my uncle took me to that Hospital, she had a good reputation...
So until that moment the Chief Neurosurgeon of that Hospital wanted to meet with me in his private office at the Clinic he worked in to review my case on a more personal note... He had seen 12 cases of SM and he said I had Chiari and SM, It would be a decompression.. I wanted him to do my surgery because I thought the woman Doctor (DR Hinostroza) would operate with him.... But it doesn't work like that.. I innocently figured that since they both worked at the same Hospital they operate together ... (???)
Neurosurgeons have their teams..
After the meet was over I caught Dr Hinostroza alone and I told my parents I want her, she's right for me... So we stopped her in the hallway and My father told her I wanted her to operate me... And she said I could only operate with the NS if you request it. I usually operate with another Doctor from another Clinic... Most Doctors here work in Hospitals and Clinics, Obviously hospitals see more patients a day due to the lower cost while Clinics are private and more expensive....

My uncle immediately found info on the NS, Dr Hinostroza was talking about... We met with him on a Monday, November 10, 2009....
I took all my MRI's, my parents and my uncle and we were off to meet him..
His name is Dr Fransisco Zambrano, and he was waiting for me with Dra Hinostroza..
I went in he saw all my MRI's and told me what was going on with my spine.. He gave me the best explanation to date on what was needed to be done.. He wanted me to understand this 100%.. And I did.. He told me get as many opinions as you can, I said Dr I've seen plenty of DR's and I want you to perform this surgery... I want to get operated...
He had seen 18 cases of SM ... He has not only worked in Peru.. He studied in Germany and Colombia University.. He did clinic studies in Germany and Mount Sinai NY...
My faith had led me to the right person.. I went in on a Monday and that Saturday I would get my decompression.. That week I did all the preps for the surgery, I got my blood test, heart test, everything it required.. I went out to all my favorite restaurants and two days before I had fast food, something I don't usually do.. The night before I went to bed relaxed and positive.. The next day I got up early and went to the clinic with my mother.. My father would meet me there with my older brother he flew in from NYC... I got ready, they washed my hair twice at the clinic with some special disinfectant, they got me ready and I was set... they placed me on the moving bed and I was headed to the OR... Right before I entered I saw my parents and my brother and I just smiled and I did tear a little bit but I wasn't scared... I guess I felt weak seeing my parents from a rolling bed, but I went into the OR with a positive mind... The last thing I remember was the Anastesiologist talking to me about my tan, she said I am going to give you something so you can relax......

The first thing I asked for when I woke up was something to drink, but I couldn't be given anything..

The first month Post OP were the hardest days, I had headaches, I had no appetite and I was taking a lot of meds... Before the OP I thought they would shave all my hair off, but they the DR only shaved a strip.... I have a scar from mid head to my cervical spine.... You can't tell I ever had surgery...
Two of my stitches kept opening, I had to get them sewn 4 times, It was not the best but I was very strong throughout this hard time.. I was blessed with the DRs that helped me, not only did they take care of me in the Clinic where I stayed a week, (they often came to check on me day and night ) They came to my house to see how I was doing, both him and her... They were awesome, I couldn't have asked for better DR's.... And at the Clinic all the nurses loved me, they all treated me kindly and they would all stop by to see me..

After I left the clinic I was in bed for a month, I couldn't stand daylight or noise, all I wanted was to sleep... I started listening to classical music and it helped me a lot, little by little I started watching TV.. I did a lot of coloring, My hands were still loose... Little by little I started taking small walks in my house... For Christmas I was already taking walks in the park, reading and getting things back to normal.... For New Year's I spent it on the beach, not exposing myself to the sun but hanging out in the pool... Little by little I started gaining strength and my stitches were finally closed...
My birthday was January 5, and I turned 26.. I decided to celebrate it because not only was I celebrating one more year but the happiness I felt to be able to say I got to 26..
The type of surgery SM and Chiari patients get are very delicate, like every other operation there is always a risk....
giulie
 
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Joined: Fri May 28, 2010 2:09 am

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