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Unread 05-20-2009, 01:20 AM   #11
jen623
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Confused vp shunt pain around the actual shunt and swollen head???

Hello I am fastly approaching my two year ann. of my brain surgery for a rathke cleft cyst / vp shunt placement.....I am writing to see if i'm not alone. Sooooo glad to find others with symptoms and pains as I have. My head at the moment is very sore and swollen i mean like baseball size right beside my shunt.....I have had shunt series over a month ago and routine mri and cat's. I am beside myself!!! I am tired of complaining and having to call the dr. and drive an hour and a half one way to see my neurosurg. the pains in the stomach they tell me i'm just sensative and feeling the tube. The chest pains like stabbing pains are just pains from your body adjusting to the tube as well as the neck pain. I have been having headaches for as long as i can remember. I am about to turn 25 and i feel like i am 100. Has anyone else's head swollen and became very sore especially lifting your eyebrows? Is this normal or should i be concerned? Please help I'm at my wits end with this. Its nice to talk with people who understand and share stories......PLEASE HELP!!!!!
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Unread 06-04-2009, 10:39 AM   #12
erie
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Default horrible abdominal pain after vp shunt..more surgery

I had a vp shunt placed in January of 09 and have had horrible abdominal pain since. I had an x-ray last week of my tummy and it seems the tubing is all the way in my pelvis. Its hard to tell whether it has broken off or just migrated. The pain is unbarable. Im having an exploratory surgery done June 17th and my neurosurgeon said he will most likely change the location of the tubing to the plural cavity..Does anyone know anything about this? Im worried I will have the same pain but near my lung. My memory is awful since surgery. I get embarassed because I forget what Im saying in the middle of a sentence or forget simple things. I hope this goes aay!1 I am thankful that I don't have a splitting headache for the first time in 16 years!!!!
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Unread 06-04-2009, 11:11 AM   #13
erie
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Originally Posted by jen623 View Post
Hello I am fastly approaching my two year ann. of my brain surgery for a rathke cleft cyst / vp shunt placement.....I am writing to see if i'm not alone. Sooooo glad to find others with symptoms and pains as I have. My head at the moment is very sore and swollen i mean like baseball size right beside my shunt.....I have had shunt series over a month ago and routine mri and cat's. I am beside myself!!! I am tired of complaining and having to call the dr. and drive an hour and a half one way to see my neurosurg. the pains in the stomach they tell me i'm just sensative and feeling the tube. The chest pains like stabbing pains are just pains from your body adjusting to the tube as well as the neck pain. I have been having headaches for as long as i can remember. I am about to turn 25 and i feel like i am 100. Has anyone else's head swollen and became very sore especially lifting your eyebrows? Is this normal or should i be concerned? Please help I'm at my wits end with this. Its nice to talk with people who understand and share stories......PLEASE HELP!!!!!
Hi!! I just had my VP shunt placed in Jan of 09. The pain in my abdomen and pelvic area is unbareable. My neurosurgeon is 2 hours away and its a pain to have to keep goin but I have been unrelenting in my battle to make them understand I AM MISERABLE! I have been scheduled to have the tubing moved to the pleural cavity in two wks on June 17th.I hope it works because I feel like Ive traded one pain for another. Keep at your doc about the pain..it is real and it isnt fun!!!
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Unread 08-21-2009, 10:19 AM   #14
Phnxsjen
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I two know how you feel I had a VP shunt placed in 2004 and have had all the same problems hurting shunt hurting pains in the stomach head ache for days even weeks seizures memory loss concentration problems. Its just something that we all have to deal with having this illness as well as many others illnesses it just something that we have to deal with. I have lost my privlage to drive, lost my job due to all of this on so many medications to control the seizure which make daily life so hard some days but with out them just come more seizures there are some days i just wish that they would take out this stupid shunt then i remember what life was like without it it was so much worse i could not even get out of bed now at least i can on most days with a limited head aches gets worse as time goes on so just hang in there it does get easier as you learn more
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Unread 08-21-2009, 05:13 PM   #15
glittergirl
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Thanks for writing....I am sorry you too are going threw all this as well. Hope you feel better and it gets better for you! Have a great weekend-




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Originally Posted by Phnxsjen View Post
I two know how you feel I had a VP shunt placed in 2004 and have had all the same problems hurting shunt hurting pains in the stomach head ache for days even weeks seizures memory loss concentration problems. Its just something that we all have to deal with having this illness as well as many others illnesses it just something that we have to deal with. I have lost my privlage to drive, lost my job due to all of this on so many medications to control the seizure which make daily life so hard some days but with out them just come more seizures there are some days i just wish that they would take out this stupid shunt then i remember what life was like without it it was so much worse i could not even get out of bed now at least i can on most days with a limited head aches gets worse as time goes on so just hang in there it does get easier as you learn more
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Unread 08-24-2009, 02:29 AM   #16
DPD235
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Originally Posted by glittergirl View Post
Hello everyone
I am new on here and sooooooooo Happy to of found this site. I have had a vpshunt put in on Aug of 2008. it has been about 6 months since I have had this shunt and dont get me wrong , my pressure problem is all gone BUT, I have had soooo many problems since surgery. It took me a long time to recover for I had sooo much pressure in my head that it was the most my Brain Surgen has EVER seen! NO wonder why I was REALLY sick for 4 years- I lost a little bit of my vision ( well its not the same) because of all the pressure on my optic nerve. It's only been 6 months almost 7 and I feel that I am FINALLY getting back to normal, EXCEPT of all the HORRIBLE odd pains I have been having since surgery. It started about 2 months after surgery...I started to get this HORRIBLE MOST HORRIBLE abdominal pain- I have been threw EVERY test MRI/Cat Scan- ETC. and NO ONE found any problem with me or my shunt. So ok...what do I do? It got sooo bad at times I could'nt even walk-everyone said it was NOT from my shunt blah blah blah...I found this site yesterday and read atleast 5 stories of people that has had the SAME abdominal pain and EVERYTHING just like me....OMG Thankyou I'm not crazy-LOL.
So time has gone by and I have had that belly pain happen atleast 6 different times to me and the longest that it lasted was from the 28th of December all the way to the 1st of February (this year) yeah, HORRIBLE then for 4 days I was great then out of the clear blue I felt like I was hit by a bus, and got this most HORRIBLE headache that I have EVER had- and believe me I have had CONSTANT headaches REALLY bad headaches for over 4 years straight! This one was almost the worst of them all! I ended up with some neck pain and a temp of 101. I went into the hospital about 3 days later-(cause you know how you hope it will just go away) well it didnt, it actually got worse I went back into the hospital cause the first time they just thought it was a bad sinus problem- (yeah, I DONT have or EVER had sinus problems)but whatever...and the second time they thought -well didnt know what to think-they called my brain surgen and the next day I was to go get a shunt tap- so I did . It was crystal clear!!! but, I got a phonecall at 8am the next morning saying that my shunt is infected and I needed to go in and talk with the Dr. > OMG I cried for 2 days for I am STILL recovering how can this be? My hair is just starting to grow out etc I thought I was out of the "infection period". ??? Anyways, I was in the hospital for 4 days they did test after test took all kinds of blood /catscan/MRI/ and so on....Here, NOTHING grew in my blood cultures or anything I stopped having a temp and just started to feel great..They said that my spinal fluid must have just had some bacteria on it from the skin or something? And I still had a bit of the neck pain with the headache but NOTHING like I had felt that week. I REALLY felt wonderful! So I got sent home on Valentines Day morning- I actually got cleaned up and went out for the whole day I felt so good! I even got engaged that night but anyways, a whole week went by and all was the best I have EVER felt since ,well, since I'd say I felt in 5 years...Then the beginning of this week I woke up and was like oh no...and the hardcore headache was back with the temp and neck pain! so I went into the hospital again the next day...Of course when it came to my temp it was normal(Thankgod) they took my blood and that was it! they said my blood was fine- my white blood cells a little up (just like before) nothing changed. so NO signs of infection or anything so they sent me home. It has been going on 5 maybe 6 days now and the headache are still here with body aches (Flu feeling) with no temp. I go into my Brain surgens office this Thursday-I am sure he's going to want to do another brain tap Ok...so, I dont understand? I thought I was going to feel better and FINALLY back to normal and live a great healthy life??? Why have I been having sooo many problems since this shunt has been put in me? This is NO WAY to live a life!!! I am sooo mad and sooooo frusterated that i dont know what to do! I am sooo scared to have to go threw "another" surgery and all that. I have read that ALOT of you have had more than one surgery- Why? wasnt this sapossed to make us all better? That is what I was told and there would be NO LIMITATIONS! Has ANY body else out there still having headaches? Is there anyone out there with a good story after getting your shunt? PLEASE write to me for I am soooo worried that my life will be like this forever- Will it? or is it just because my shunt is sooo new??? I cant take it and its REALLY taking a tool on my fiancee and the people around me but especially me...I am getting REALLY depressed- I am only 36 years old and am planning a wedding and a family someday soon but how can you plan anything when you never know how you'll be feeling? aHHH I REALLY NEED PRAYERS! ALL I WANT IS TO FEEL BETTER for longer than a couple of days...PLEASE write and tell me your stories even if they ar bad ones. I am glad to of found people who are going threw what I am and feel what I feel Please send me your stories-I Thankyou*
I was 29 yrs old when I was diagnosed with Chairi Malformation. I had the decompression surgery for this on July 9th 2008, to relieve chronic headaches, blurred vision, loss of hearing in left ear, and mild blackouts. Surgery was successful and I was recovering faster than expected, when on Aug. 30th 2008, I became extremely ill and was rushed back to the hospital with to diagnoses, (pseudo tumor cerebra, and spinal meningitis). None of my doctors could confirm either condition, and due to the large amount of CSF fluid building around my brain, my neurosurgeon placed a Lumbar shunt in my back to relieve the pressure. He stated he did not believe I had developed hydrocephalus due to my ventricles,(fluid chambers), not being enlarged. It took me a long time to recover from this surgery due to the increased pressure my brain put on my optic nerve, causing my eyes to be crossed so bad they did not expect them to return to normal and leaving me with extreme double vision. A few months later my normal vision was restored, but the lumbar shunt only drained while I was standing, making it impossible to sleep. This led to the removal of the lumbar shunt and insertion of a ventriculoperitoneal shunt on Oct.1st 2008. This seemed to be the answer, and was working fine except for the intense lower abdominal/pelvic pain. I woke up in the recovery room with this pain and was told it would go away in time. Well like many of yawls posts Ive read, this is where I started to feel like I was crazy! About a hundred tests, CT scans, MRI scans, ER trips with multiple DRs later, I was told by my neurosurgeon that he could no longer help me and I was going to have to live with the pain. This led my wife to find me a new neurosurgeon, and on Feb.4th 2009 I had a shunt revision to place the tubing in another location in my abdomen, with no improvement. This led to yet another shunt revision on March 4th 2009, this time changing it to a ventriculopleural shunt. It was amazing that as soon as I woke up from this surgery I had no more abdominal pain. Since then I have had off and on sharp stabbing pains in my right side chest cavity, and now I am having intense headaches/migraines behind my right eye, and what I believe is directly under the shunt pump in my head; also causing slight double vision when migraine is at its worst, and severe sleep ad mea! My Neurologist has only tried to treat these symptoms with sleep aids, and pain pills, which do not really help much, and time for my body to adjust to the shunt. I guess my question to you all is what do I do now? Am I supposed to live on pain pills and sleep aids for the rest of my life? How much time does my body need, and if it is adjusting why are my symptoms getting worse? I am a Police Officer and am finding it extremely hard to do my job with these symptoms! I have not contacted my neurosurgeon since last shunt revision for fear of having to have another surgery, and possible losing my job! I would greatly appreciate any help or advice in this for I believe Im at a standstill! Thanks in Advance!!
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Unread 08-29-2009, 04:25 PM   #17
miche27bbd
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Originally Posted by erie View Post
Hi!!! I am soooo glad I decided to research my own problem before I had my gaall bladder taken out( they thought that must be where my pain was coming from). I had a VP shunt placed in January of '09 and woke up from surgery with horrible vaginal,rectal and abdominal pain.It has never gone away!! My head is doing great...but I seemed to have traded one problem for another!! I have been sick for 16 years with Pseudo Tumor and have been doin meds and spinal taps all this time. I finally moved to another state and changed neurologists...they were shocked at the amount of diamox I had been on for so many years and immediately scheduled my surgery. I have known something isn't right w my tummy since surgery but wasn't gettin anywhere. I stumbled on to this website when I decided to take matters into my own hands. Thank God!!! I called my doc and they logged on...case solved!!! They are going to shorten the tube and check it all out. I hope I can wait 3 wks...it seems to be getting worse daily and now I'm having blood in my urine and stool. I also have had a horrible time with my memory and often lose my train of thought when speaking..does this happen to anyone?? I have also bbeen experiencing neck pain and pain into my face that feels like nerve pain...it's awful!!!! Thanks everyone!!! We are all in this together!!!!
What dosage of diamox were you on? I have been put on diamox and they are hoping that will bring me back to normal rather than putting in a shunt. I started at 500mg a day, now i'm on 1000mg. I'd like to know what they consider a large dose. I get almost zero information from my neurologist.
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Unread 08-30-2009, 03:23 PM   #18
glittergirl
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Hello there!
I am soo sorry to hear of ALL that you went through...yes having a shunt is REALLY something to get used to. When I first got mine in I too had ALL thoses abdominal symptoms-I had ALL kinds of tests...no one found ANYTHING wrong or out of place with me...So all I could do was to put up with it...Then after a while of NOt lifting anything to even a clothes basket...The pain went away...But anytime I would lift something or move something those pains would come back- After about 6 months of that & 6 months of COMPLETELY taking it easy-the abdominal pains ALL went away then the headaches started instead. Since then I have been getting such bad headaches with fevers & chills that it is COMPLETELY Unbareable and usually I end up in the ER. I have been hospitalized for them thinking that I too got meningetis-But it was all negative. Since it has now been over a year that I have had my 1st vpshunt put in- I am still VERY sick My fluids in my brain are fixed because of the shunt and all that is now better but, I just am not right. Day by day...I have NO idea if I will get those headaches & fevers again-when it comes its comes just out of the blue and hits me like a truck. then I'm down for usually 6 hours-Then I'm fine-Its quite strange. Within the last 4 days I have called and made that appointment for me to FINALLY get my cyst (of the third ventricle) taken out-My opperation will be Sept 22nd of this year-I am sooooooo scared I just cant handel it-Im scared that My symptoms will not get better and that maybe I will just get worse? I know I have the Best surgen operating on me at the Cleveland Clinic but STILL, I am just flippin out & so VERY scared that It will NOT all work out for me-Maybe its because I have been sick for soooo long? Anyways PLEASE PRAY FOR ME to make it let alone make it out perfectly so I would not then need a shunt put back into me. As for you-I am REALLY sorry for all the problems you have had, I too went blind because of all the pressure on my optic nerve-& thankGod it has came back! I think that you should try to get some disability help... I know, I NEVER wanted to go that way myself but what can you do when we feel the way we feel when it comes to this sickness? I think you will get better because these shunts just take alot of time to get used to and for our bodies to get used to. I still have to take vicodin and all that when I am in pain- But BELIEVE me, after a while you WILL NOT need to constantly be taking those pills.I worried about that too-Becoming a pill head and all- and ThankGod I eventually got off of them and now ONLY take when needed and when I think about it , its NOT very often at all. Maybe I find myself taking the pain pills like once every 3 weeks if that? When ever It get REALLY bad. I guess all i want to say about this is that you & your body WILL get used to all this it just takes some time. I promise Please let me know if you are feeling any better? thanks for writing have a beautiful day!







Quote:
Originally Posted by DPD235 View Post
I was 29 yrs old when I was diagnosed with Chairi Malformation. I had the decompression surgery for this on July 9th 2008, to relieve chronic headaches, blurred vision, loss of hearing in left ear, and mild blackouts. Surgery was successful and I was recovering faster than expected, when on Aug. 30th 2008, I became extremely ill and was rushed back to the hospital with to diagnoses, (pseudo tumor cerebra, and spinal meningitis). None of my doctors could confirm either condition, and due to the large amount of CSF fluid building around my brain, my neurosurgeon placed a Lumbar shunt in my back to relieve the pressure. He stated he did not believe I had developed hydrocephalus due to my ventricles,(fluid chambers), not being enlarged. It took me a long time to recover from this surgery due to the increased pressure my brain put on my optic nerve, causing my eyes to be crossed so bad they did not expect them to return to normal and leaving me with extreme double vision. A few months later my normal vision was restored, but the lumbar shunt only drained while I was standing, making it impossible to sleep. This led to the removal of the lumbar shunt and insertion of a ventriculoperitoneal shunt on Oct.1st 2008. This seemed to be the answer, and was working fine except for the intense lower abdominal/pelvic pain. I woke up in the recovery room with this pain and was told it would go away in time. Well like many of yawls posts Ive read, this is where I started to feel like I was crazy! About a hundred tests, CT scans, MRI scans, ER trips with multiple DRs later, I was told by my neurosurgeon that he could no longer help me and I was going to have to live with the pain. This led my wife to find me a new neurosurgeon, and on Feb.4th 2009 I had a shunt revision to place the tubing in another location in my abdomen, with no improvement. This led to yet another shunt revision on March 4th 2009, this time changing it to a ventriculopleural shunt. It was amazing that as soon as I woke up from this surgery I had no more abdominal pain. Since then I have had off and on sharp stabbing pains in my right side chest cavity, and now I am having intense headaches/migraines behind my right eye, and what I believe is directly under the shunt pump in my head; also causing slight double vision when migraine is at its worst, and severe sleep ad mea! My Neurologist has only tried to treat these symptoms with sleep aids, and pain pills, which do not really help much, and time for my body to adjust to the shunt. I guess my question to you all is what do I do now? Am I supposed to live on pain pills and sleep aids for the rest of my life? How much time does my body need, and if it is adjusting why are my symptoms getting worse? I am a Police Officer and am finding it extremely hard to do my job with these symptoms! I have not contacted my neurosurgeon since last shunt revision for fear of having to have another surgery, and possible losing my job! I would greatly appreciate any help or advice in this for I believe Im at a standstill! Thanks in Advance!!
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Unread 10-11-2009, 06:53 PM   #19
PST.VPSHUNT
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I know that it is horrible to title a thread "Thank God" when so many of us are suffering, but it is such a relief to know that I am not crazy. After living with Pseudotumor Cerebri for 3 years, getting to a point of it leveling out, and now having it come back for the past year+ with a vengeance I finally decided to pursue with a VP shunt. I can't tell you what relief I got in my head and for that I am thankful. I keep those of you who have not got that relief in my prayers. However, since I woke up post op, I have had a horrible sharp pain in my pelvis that does not subside. I called my neurosurgeon whose nurse told me that the small tube could not possibly cause me any pain. I needed to go to my primary care provider (PCP) or to the ER. So I did. My PCP ran test upon test and ruled out everything from ovarian cyst to appendicitis. I finally got my family to help me sit up and google this pain on my own. Here comes the "Thank God." Thank God I found you all who have been so brave and helpful to share what you are going through. I read your stories and felt so much peace among the pain. I read and found that I, like miche27bbd, feel like I traded one pain for another but at the same time I realized that this is a real pain and I am not making it up!!! I had to say thank you all for sharing your stories and for helping me believe in myself and trust my body and what it is telling me.
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Unread 09-06-2010, 12:10 PM   #20
myheartinsf1
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Default Wow I thought I was the only one.....

I read your story when googling pain in shunt.I quickly joined the site because I couldnt believe what I was reading.My story is almost identical to yours.I was 29 when I had my first shunt put in tho.
Prior to the last week of April I was on top of the world.I had finally made it in my career(hairstylist) was newlywed (2weeks) and so fulll of life.
I was at work and dropped a mirror because my hand just let go of it when I was showing a customer her hair.The next day I had the day off work.My husband and I had plans to have dinner with friends and I was feeling horrible.My head felt like somone was drilling into it.My body ws jerking and having spasms.We went out to dinner anyway and I was just irritated and trying to keep my best face on.We went to the mall after and my hands and feet were pouring out water.I was disorientated and walked into glass door I coulnt figure out why.
After that we went and got a coffee and the pain in my arms and legs was geting worse.My right leg was actually moving up and down.The next day we though somethings really wrong.I was so sick we thought maybe I was pregnant.Not that we would know what thats like but I just knew something was really wrong.We went to ER and well my life has neer been the same.
I was told the shunt would make everything better and I would fully recover in no time.......Ya right.
I was very determined and went back to work shaved head and all 3 weeeks after surgery.I only lasted a couple weeks and have been bouncing off and on disablilty ever since...Recently had to apply for SS.
Since my surgery I have had a ton of medical problems.I still get horrible headaches daily.I have pain attacks in my arms and legs back and hip.They have diagnosed me with fibromyalgia and Hydrocephalus.At first they said I had pseudotumor cerebri.Now I get mixed and confusing reports from doctor they are all over the place .
They say its fibromyalgia but that same pain is part of the reason we went to ER in the first place.I dont know what to do anymore.The doctors tell me they dont know what caused hydro or anything else.The doctors also say my case is so rare....After reading your post I guess its not so rare.
Im really concerned right now thats what brought me here is that my neck near my tubing is killing me.I have tried pain medication and muscle relaxers ,ice and heat.Nothing is helkping......






Quote:
Originally Posted by Felicia1981 View Post
I had a VP shunt placed back in October of 2008, I have since the surgery had short term memory loss, now out of the blue the actual shunt itself is hurting.... it starts out as a "throbbing" then remains... I have experienced the "throbbing" before an thought nothing of it... but earlier yesterday morning I nearly fell from being dizzy an light headed... like I had gotten up to fast, but that was not the case... this was differant. Also, its like the pain is ONLY where the actual shunt itself is, its not a severe pain more annoying than anything...

I went to the ER last night mainly because I was scared... this is all new to me... Anyway, to make a long story short the dr was very rude an walked out of the room as I was in mid sentence an then went an hid in a little room down the hall from my room... he ordered a CT Scan but like my primary dr told me, results are only as good as the person trying to read them.... so I am goin to go an get a copy of CT Scan that was done last night an go see a neurologist. ... The second time the dr (what a joke!) came in my room was to give me a Rx for Fioricet and papers on "What is a headache" I was beyond mad! It was because of a headache they even did my first CT Scan that showed I have hydrocephalus to begin with....

Either way, the shunt still hurts... my short term memory still sucks, still get light headed for time to time an just want to know if anyone else has had this an if so, how was it treated?

I just know this isn't normal I guess I feel that I have had the shunt long enough to know now the differance between what is an is not normal for me....


ps: I know the abdomen pain you are talking about... mine comes an goes, once it got so bad I had to sit down in the middle of a store because I couldn't walk it hurt so bad... and my neurosurgeon had told me that it was the tube moving around not to worry.... yeah... I still get headaches, not as bad as before I was "shunted" but have noticed I have more limitations than expected... I am 27 an feel like a prisoner... sorry its not more of a positive message.......
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