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Exercising after decompression surgery (Chiari type 1)
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Exercising after decompression surgery (Chiari type 1)

I'm new to this site and this is the first time posting anything about my condition.  I was diagnosed with chiari malformation type 1, 5 months ago and scheduled for decompression surgery in 2 months.  My questions are around exercising and weight lifting...I've read to limit weight lifting to 15lbs but I'm not sure if this applies to people that have been through decompression surgery or not.  I work out 3 to 4 times a week and even though I get very dizzy and short of breath, I lift much more than 15lbs today.  Will I have more limits after surgery?  I'm not saying exercising is everything, but exercising without the dizziness is at the top of my list for going through surgery.  
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

From my Drs instructions from dx to surgery no lifting that will cause strain.

So if lifting 15lbs does not cause strain, then for u that may be ok, for someone that does not lift 15 lbs may be too much.
  U have to listen to ur body, if u have  symptoms after an activity then u should avoid that activity.

Post op u will have to refrain from lifting for some time to allow urself to heal properly, other wise u can have set backs.

It can take up to 2 yrs to heal completely.

  Surgery may not take that dizziness away....it may be something u always have ...u can also get worse post op...some people do for unknown reasons....

  Surgery is not a fix or a cure...so to have it to lift weights with out dizziness is not the right reason to have it. What other symptoms and issues do u have ?...do u have a CSF obstruction, or related conditions?

   I had surgery bcuz I had drop attacks, one such attack left me with injuries that required surgery to fix....I still have issues and am 2.5 yrs post op.

  Make sure u see a true chiari specialist...

   "selma"
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1849902_tn?1319252997
Thank you selma!  I've been misdiagnosed for about 5 years now.  My symptoms have been severe dizziness, heart palpitations, shortness of breath, and fatigue.  After reviewing my CSF study(MRI), my ns recommended surgery and said that I did have significant CSF obstruction.  I'm seeing a Dr. David Jimenez who serves as chairman and professor of UT Health Science Center in San Antonio and the Chiari Institute through St Lukes also in SA.  He's well recognized as being an expert when it comes to chiari which gives me some comfort.  I will say, after my first ns recommended I wait until my symptoms get worse before cutting open my head, I was a little shocked to hear Dr Jimenez recommend surgery upon my first visit.  

The reason I am going through with surgery is to hopefully get back the active lifestyle I once had.  I'm 38 but about as active as a 50 year old.  My cardio is limited to walking and light stairs and as I mentioned in my previous post, when I do lift weights, I get very light headed and dizzy.  After discussing all my symptoms with my Dr. he seemed confident that most or all of my symptoms would be relieved.

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620923_tn?1405964489


  Surgery can help slow progression, and restore CSF flow, but it can not always restore our once active lifestyle...chiari is life altering...even post op.

U have age on ur side as u r younger than I was when I had mine, but make sure u r tested for related conditions b4 u have surgery as conditions like tethered cord and ehlers-danlos can affect the recovery....

Surgery is not a cure or a fix and some have other reactions to surgery that has made them feel worse post op....

Be advised about all aspects, and that it will take time and u have to have patience and allow urself to heal.

   Please keep us posted

   "selma"
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1849902_tn?1319252997
Thank you again Selma, I will definitely follow up on the conditions you mentioned and have many other questions before surgery in December.  If I seem blindly optimistic it's because I am hopeful that surgery will help with the vertigo and palpitations and I actually know 2 people that have been through surgery that tell me it was life changing in a positive way.  I realize I may not be as active as I was when I was 25 but if I'm better than I am today, that's good enough for me.  

I will definitely keep you posted with the progress and I appreciate your words of support.  
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620923_tn?1405964489

  Well do check all the other possible issues too.....there r many that can be associated with chiari and  it could very well be low  levels of vitamins and minerals...some can cause heart palps, vertigo and  many of the symptoms we feel r chiari.

U r welcome...and do post ur surgery date when u get on in our surgery date thread....this way we can keep u in our prayers.

   "selma"
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1306714_tn?1327260680
I don't want to give you negative thought's, but just as Selma say's Chairi surgery is not a cure.  It just slow's down the progression.  I went into my first surgery with the same positive thought's as you have.  Like I said I don't want to be negative, but I had the same thought's that you are having now before surgery.  I thought "I'll have the surgery and be back to work in 12 week's".  Well thing's don't alway's work out as we plan.  I have now had to quit my job due to I can't do the physical work any more.  I say this because I don't want you to set yourself up for disappointment.  Be ready for some changes in your life.  There is nothing we with Chairi  can do but take one day at a time and be ready for change.  There are a lot I had to go through (3 surgeries) due to doing to much after surgery and not listening to the doctor's as I should of.  I just wanted my life back as it was before I had surgery.  It didn't work out that way so it was so much harder for me to deal with the change in my life and excepting it.  Just be prepared for any thing.  I would still go through the surgeries again because it did make me feel better as far as the pressure in my head and I don't have as severe headaches, but with change you have to be ready for different changes. I wish you the best.  I also send positive prayer's your way because I don't want you to be discouraged.  Just prepared more than I was.  Good luck and keep us updated.
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1849902_tn?1319252997
Thank you linnielou...I'm definitely looking into testing for ehlers danlos and tethered cord and any other causes for my symptoms.  I appreciate all the feedback and will keep you guys updated.  

I have heard many people talk about leaving their job not being able to handle working due to the symptoms of Chiari.  Anyone have experience with disability and Chiari?
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1306714_tn?1327260680
I'm dealing with that issue right now.  Not that I wanted to.  I loved my job,  but as I said before having Chairi has there disappointment's.  I was planning on going back to my job.  I never in my life thought I would be where I'm at today, but I have excepted it.  I pray that you can get this surgery. Follow the direction most importantly.  Don't lift any thing if possible for a while.  I ended up with 4 surgeries, 3 for the head in 4 months and the last one almost killed me, due to my body was in so much shock with so many surgeries in such a short peroid of time.  I applied for disablity in June and we are now on the appeal.  It is a long process, but I am learning patient.  They say it can take up to 2 year's to get approved.  It was hard enough to admit I couldn't work any more let alone apply for disability, but life is what it is.  That s why I stressed to you to be ready for any thing will come your way.  We never know what will hit you.  Not working any more hit me really hard and I'm still trying to deal with it.
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hey ther..i wish u the best of luck in your decision and endeavors...if you are not quite convinced the surgery will help, remember that you are still living with what you have..so it the very best you can...and i kknow this may be hard and frustrating,,, but whatever you decide, and especially if yu decide to wait, get a dr. that will work WITH you on DOCUMENTATION!!! as they do not usually get too detailed about what YOU are saying or feeling. . you need to tell this dr that if you are going to trust him/her, that he/she needs to trust YOU , and keep record of what you say you are experiencing, and not just bbase everything on their 30 second neuro test in the office...there's much more UNSEEN about living with chiari than the "seen" sometimes.  and if you do find yourself unable to work and looking into disability, the documentation can definately make this shorter and easier process.  Unfortunately, the lack of Dr documentation is often the reason diability becomes that much more dificult...and straight out asking or mentioning it can unfortunaltely trigger them to think of you as wanting a hand-out like so many others do...this is truly sad,  but real...good luck and i 'll be praying for you!!
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1849902_tn?1319252997
Hello Selma,

I've been looking for a genetics Dr. in San Antonio with NO luck.  Since your recommendation, I have done a lot of research on Ehlers Donlos and I have to say I have more than just a few of the symptoms related to EDS including the silky skin and easy bruising and scarring.  I'm in the process of contacting medical genetics lab and Baylor college in Houston but as I mentioned, finding a Dr has not been easy.  

Were you tested for EDS and if so, what sort of testing is required to properly diagnose the different types of EDS.  I realize you're not a Dr but I'm hoping to get some insight from someone that has been through the testing.  
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620923_tn?1405964489

  Hi...until u get a geneticist to do a skin biopsy this link is a wealth of info on  EDS and JHS.....

  Just reading symptoms of the types may help u narrow it down.

  I have yet to get to a Dr, as I have to go out of state and I do not drive, so I too am waiting on the biopsy...but my NS and NL did all the other clinical testing to determine I had it and took precautions during my surgery to prevent set backs.

   http://www.reumatologia-dr-bravo.cl/para%20medicos/crit%20y%20diag/DIAGCRITJHS.htm


   "selma"
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