I'm having charity decompression surgery HELP?

[tlofty]

I have been dealing with Arnold chiarimalformation since I was 13 I'm now 24. I've finally found a NS who will listen and recommends the decompression surgery.I'm nervous and worried. I haven't been able to find really anything on the recovery side on line. Will my balance be back to normal? Or at least help me become more stable? Will my nausea go away? I wanna know experiences of others. What to expect? Limitations? What about physical therapy would that be strongly suggested for a proper recovery? Hope I can get some range of answers. My surgery is on may 13th so I have a month. Please help put my mind at ease!


Thanks everyone!

[selmaS]

  @ Claire have you attempted to see if you can get into a clinical study?

If you are interested in checking it out....please let me know.

[ClaireNicole]

Please ease your mind and consider how truly blessed you are to be getting this surgery. I would give anything to be in your place!! I will die bcuz nobody will accept my Louisiana medicaid. I've been fighting everyday for help for nearly two years and I'm exhausted just laying here waiting to die. I have chiari and a pineal brain cyst. I have two posts on here.... I wish you all the best and a bright future:)) Hugs~

[tlofty]

Thank you. I wish you the best of luck on your journey as well. Keep positive thoughts. God Bless you

[selmaS]

  To this thread I bumped up -

http://www.medhelp.org/posts/Chiari-Malformation/List-your-surgery-date-2016/show/2805643

[selmaS]

  I bumped up the thread so just add your surgery date and a prayer thread will be posted for you...wishing you all the best.

[tlofty]

Add it where? On here?


May 13th 2016

[selmaS]

  Not sure how long until you might be able to go back to work....what type of work do you do? I lost my job when I was out post op.....never went back....I am now looking for a way to earn from home.( I no longer drive)

The activities you mentioned may be difficult to get back to all at once, but over time you may get back to them....I also love camping and hiking....but the hiking was too much for me post op.....and I have not had an opportunity to get camping, but know the type of camping I do, I could have been back at it now for a few yrs....Swimming I was back in a pool a few months post op...but it was uncomfortable to swim holding my head up, so I turned over onto my back which worked great....I also did a lot of walking around inside the pool to help gain balance and just to have exercise...I loved it.

I wanted to let you know we do have a Prayer thread we post for those going in for surgery...I will bump up the "list your surgery date thread" so you can post your date if you would like a prayer thread posted for your surgery.

[tlofty]

That would be sweet.

[linnielou232]

Everyone experience is so different, but one thing that helped me from getting scared is. "You don't have a choice in getting this surgery done".  Is it easy "No" Is it worth it "Yes".   I had to unfortually had to have 4 in all, but reason being something was rejecting the stitches in my head. Nothing no one else has had.  For recovery it is also different time limit. 1 thing I suggest is just listen to your body. You have been dealing with this for a while so you will know.  When you feel you need to rest, Rest. no lifting or bending or carrying anything over 10 pounds.  Personal hints for the hospital stay that helped me.   I do know they have a site here that has suggestions.  I was 49 when I had my surgery and after all 4 surgeries I started my menstural so I would bring some personal products just in case, undies, and your favorite pillow, I also brought extra so I could change it everyday.  You will do fine, and as I said it's nothing to worry about it something to look forward to because it will help you feel better.  I know my balance is better, and having surgery is life changing, because there are things us chairians can no longer due after surgery and it has taken me 5 yrs to adjust, but I'm strong willed any way so it helps to have that.  I wish you the best and I hope this helps a little bit.  Wishing you the best.
Linda :)

[tlofty]

What limitations have you come across in the day to day life that you feel you can't really do because of the surgery? I like to be kinda active. 4 wheeling camping hiking swimming. When would you suggest would be a decent amount of time before I can try to return to work? Or would it be best to try to be a stay at home after surgery? My mom had the same surgery but hers wasn't so advanced as mine is. She is stuborn and even when she shouldon't strain her self she does anyways. I didn't think I would get so many comments so quickly. I'm so thankful to come across this forum. :) thank you everyone.

[Initwithyou]

Hello!  As you have read every one is different.  However, I was a "severe case" as they say and one year post op, I hiked Angel's Landing, the Narrows and the Pools in Zion National Park in one day, then two days later hiked the Hoodoos in Bryce followed by a two day mule ride down the Grand Caynon and back.  And did well!  With regards to the nausea, I recently went to a Chiari Center due to increased symptoms and the NS kept asking my if I had nausea which I do not.  He was very surprised that I didn't.  So there must be a big connection.  And, yes, as you are reading, you must listen to your body, it will tell you.

[Initwithyou]

goodness, I just don't get this...how do I delete the duplicated entries...LOL, sorry!

[Anniefaj]

Hi and welcome. I just had my Chiari surgery I have been out of the hospital now for about a week and a half. The nasuea I had went away and I don't have the numbness And tingling anymore. I am still having pretty bad headaches but not the same as before surgery. Everyone is different and it depends on what your symptoms were before surgery and which ones are directly caused by Chiari .
For many that have had the surgery done they are very happy they did. I hope to still continue to see more positive changes and move on with my life.

I wish you the best with your surgery.

[tlofty]

Thank you. It's so nice to have people who have gone threw this to speak too. I've got so so many symptoms that my doctor has ruled to be caused from my chiari. The worst I have is my occipital headaches,nausea, poor poor balance, blurred vision, difficulty swallowing I cam go on. I just want to be able to work and help my boyfriend to support our life's together and I'm scared I won't be able to really return to work and put forth any financial help and stay a long term burden to him.

[selmaS]

  Hi tlofty and welcome to the Chiari forum.

May I ask has your Dr ruled out ALL related conditions?

Recovery is dependent on what other conditions you also have....and on your Dr and you....how your body typically heals.

What other issues do you have?...Did they do a CINE MRI to check for a CSF obstruction?

I had surgery in May '09 and can say I am finally better then I was b4 surgery....surgery was the best thing I could have done....but I do have EDS and I heal slowly so, it took time for me to bounce back....and I do have a few related conditions.

[tlofty]

Yes we've have gone threw so much to see what we can rule out but I've had a ton of "second opinions" and they all feel it's connected. I know I don't have a srynx but not really much more info other than its 8mm and has basically disabled me. :(

[Delilahtb]

Hi, you said you are having nausea? Could you tell me a little bit more about it? That was what I consider my first symptom and my GP tells me that to isn't related but for a year now, as soon as I open my eyes in the am I am extremely nauseous and start to Vomit for about 20-40 minutes. I'm so glad, you finally found a dr to listen. If I hear the term "subconscious eating disorder" one more time I might snap.

[linnielou232]

Since being told I had Chairi and having to deal with so many Dr's. It amazes me on how many people in a hospital does not know what it even is.  I can understand others not understanding because I was one of those who was bewildered when finding out I had Chairi.  There is so many Dr's out there that miss understand what is going on.  As my friend help me with is Always stick up for yourself and stay strong. You know what is going on in your body and we need to educate them it seem's so they can understand.  It was a long road for me with surgeries, but at my last Dr's. visit the Dr said to me.
"I now know when I operate on someone he thinks of me and what worked".  This made me cry knowing my journey was not done in vain, and neither will yours.  Make sure you get yourself a health partner, husband, daughter, anyone who can go with you to your visits and they can stand up for you also.  I know this saved me a lot of headache.  I also started making a list of question when they came into my mind so when I had an appt. I didn't have to waste my time nor his.  I hope this helps a little, and just remember tomorrow will be a brighter day.
Linda :)

[tlofty]

It took me a while to get my doctor to understand my throwing up and nausea was coming from my virtigo due to the Pressure build up in the back of my head. It starts from the moment I wake up till I go to bed. I've found promethazine has helped me so so very much. I have "spells" where I become dizzy almost like I'm drunk my balance is crap already but during those moments it becomes worst with the upset belly. What ever you do listen to your stomach and do not take no for answers.

[tlofty]

I have an 8mm herniation.I have a ton of symptoms that have affected my daily life. I can't even work any more. I forgot to mention that.

[linnielou232]

I can relate to this.  I also had a 7.5 mm herniation and I had it all planned out that after surgery I would go right back to work in 12 wks. Well on the 12th week I was in having a 2nd surgery.  I had to have 4 all together and finding out that I could no longer work was devastating for me.  I am now working on getting SSI which has taken a LONG time, but having a hearing soon and I now have other issues so I am praying it will be easier to get it this time.  I worked for 33 yrs so now I'm not going to stop trying to get it until I do.  You might want to look into this because of the time it take to get it together, but hopefully things will work out for you and you can get back to work.  Just take 1 day at a time and relax. Best wishes.
Linda.