please share how you were helped w/chiari surgery

[auntij2746]

Like many I am recently dx w/ chiari in March this year. I have learned so much from this site ie what questions to ask drs, what tests to request,the reality of being a chiarian for the remainder of my life. I am older than all of you -61- and even my choice ns said I am his oldest chiarian  but he would not hesitate to encourage his own mother to have the surgery if she had my symptoms. We are both grateful that I have not experienced symptoms before this but also confused as to why it appears now
MY QUESTION. I would love to hear from some of you  if there were improvements that you experienced after the surgery. I am trying to make the decision and I dearly need to hear some of the reasons you are happy you had surgery. I do totally understand that every surgery and every recovery is different and I thank you so much for any replies. You are such a wonderful group of caring people.

[selmaS]

  Some of the different Chiari surgeries will depend on the NS, and what all is going on inside...a PFD can be done with a lamenectomy (where they chip away at the bone of the first 2 vertebrata ) and a duraplasty(where they open the dura and replace with a patch) the patch can be bovine,cadaver,ur own pericardium, synthetic.Many will cauterize the tonsils to help them retract somewhat to add to the room made with the removal of bone, and the addition of the patch.

If u have EDS u may be prone to rejection issues, this may cause infection and failure of the patch, and a CSF leak will result.

There r less invasive decompression's where they do not do the duraplasty or touch the tonsils,.....it is called a bony decompression,...many times done on children...and many times will need to be re-done as symptoms can reoccur sooner post op from this type of surgery.

Again, this is y it is sooooo important to go with a true chiari specialist, and have all related issues/conditions ruled out b4 surgery.

[Mazie1209]

I'm with Auntie! Would love stories!  :o)
Mazie

[auntij2746]

Thanks so much viva for your response! I was encouraged by your words. Which surgery did you have? Selma, I think I need explanation of different chiara surgeries or a place to find them in the site :-)    I have been mia from site due to a bad reaction from an antibiotic bactrim :(  that I was taking to clear up a sinus infection before I could schedule surgery so now am set back. I know there must be a good reason for this maybe to give me more time to make the decision about surgery. I do want to thank all of you for responding though :-)

[selmaS]

  Hi...I would suggest u read my surgery journal, but really to tell u the truth I would have surgery again, I no longer have drop attacks and I did not get a syrinx...and I finally understand what was wrong with me all those yrs.

I really feel that we will notice more of the benefits yr by yr....it is not something u will see right away, in fact u may feel it  was a mistake as it is a slow process and we need to be patient .

I feel stronger now at 3 yrs post op then I have in yrs b4 surgery...so, that is a plus for me...do I still have some symptoms and issues yes, but I was told I may...so, I am not upset and I accept them.

[Viva001]

That would make ago od bumper sticker:  Chiari is a no brainer!

[ljturner5366]

Hi,

I had decompression in January (no duraplasty) and had immediate relief of my symptoms. Prior to the surgery, I had head pressure, facial pain, jaw pain, visual disturbances, tinnitus, neck pain, dizziness, insomnia, etc...

To say that all of the symptoms are 100% gone 100% of the time would be an exaggeration, but it was so worth it. I was in the hospital for two nights, then once I was only on oral meds I was able to go home. I had 16 staples in my neck that were removed after about 3 weeks, and it's been all uphill from then on. I felt so much better that I was able to successfully undergo flat foot reconstruction surgery in May.  As I have said to people who knew about both surgeries, the Chiari seems like a tooth extraction now compared to the foot surgery, I am still non weight bearing!  

So much of how this turns out depends on your attitude going in. I honestly didn't think I was a surgical candidate but when my NS said that he truly felt like decompression would relieve my symptoms, it became, to use a bad pu, a no brainer....

[linnielou232]

My syptoms all started in the right eye and ear and front of neck so it took almost 3 yrs to get dx'd.  I was 45 when my journey began and It became so severe with pain in the base of my skull at the end.  I couldn't live life anymore.  I was 48 when I had surgery which I don't regret at all.  I am back doing little things that I enjoy such as gardening.  I sit on my behind but at least I can enjoy it.  My NS explained the progress for some of us this way.  As we age our bones get weaker and this is how some of us progress.  Some chairians can go all their life with out any syptoms.  My husband and I did experience a car acccident and now looking back I think this is what triggered mine.  I don't tell him this because it would probably make him feel bad.  You will know if it is time from listening to your body and your heart.  As I said before.  My journey was a long one, 4 surgeries in all, and it was a long road, but I have no regrets.  I do still get HA"S but nothing compared to the pressure HA's I used to have.  I wish you the best in making this decision, but know your not alone.  I have you in my thoughts and prayers.
Linda :)

[Viva001]

I am also 61 & about 2.5 wk post op.
In adults, it appears as though some illness or trauma, even childbirth, can start the cascade.  I met one ~60 yr old woman in my NS's office who merely reached up In the cabinet, which began her symptoms.

I woke from surgery w/o numbness in my arms/hands & w/o the overheated sensation discussed earlier today.  Even dopey from pain meds, I knew where I was in space, and my mind was and is MUCH clearer.
My DD is a PICU nurse,and she was very impressed w/my recovery, which she said was faster than the children she saw as patients.
Some of the dysautonomia seems better--I no longer feel like I'm dying, which I suppose was the NMH,as well as the effort it took to breathe.  My digestive system is getting back to normal (slower than is typical).
Pain was never my constant symptom, but My NS warned me about the head pain post op (like a car parked on my head).  It was constant for about 10 days, then didn't diminish slowly--it just kind of dropped drastically.  I'm getting by w/400mg ibuprofen just a few times/day.
Vivian

I'm not only happy that I had surgery, I wish I had it years ago!