Please, I need your input....

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Please, I need your input....

Postby hayla2 » Tue Jun 19, 2007 10:39 pm

I am about to embark on a journey that will change my life in some way. Next Friday, the 29th, I will have decompression surgery done. I NEED to know how those of you who have had the surgery faired after it. Whether it's good or bad. I need to know if there were complications, if you got any better. How was recovery?

I am scared to do this. I keep thinking that I am going to die during surgery or soon after. My doc was too forward in telling me all that could go wrong. He didn't mention much of what could go right. Not that he wasn't hopeful. I think he wanted me to know the dangers before I agreed to it.

So could you PLEASE take some time and let me know how your surgery faired. I know that it doesn't mean mine will go the same but I want to know what COULD happen. Thank you. Melissa
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Postby butterflyblooms » Tue Jun 19, 2007 11:24 pm

Melissa, Just wanted to say that I have the same fears as you. My surgery is on the 28th.

I have been through all kinds of emotions this past week or so.

I will be praying we both get some peace of mind during this last week.

Good luck and may we both have safe surgeries and a fast recovery time.

TAKE CARE OF YOU
BB
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Postby drummergrl » Tue Jun 19, 2007 11:25 pm

I had my decompression in November. I'm doing fairly okay, but I do have some symptoms. I get annoying tingling down my right side a few times a week and my right side muscle weakness hasn't improved at all. Really, nothing symptom-wise has changed for me. I had my first post-op MRI in February and nothing had changed in my syrinx, and I have my second MRI this Friday. My appt. is on Monday and I'm hoping to get some answers. I know that some surgeries can be successful without stopping symptoms, and I hope that's all this is. But honestly, I'm still glad I had the surgery. Even if I have to deal with a few, pesky symptoms, hopefully my overall health will be better because of a much higher CSF flow. The only complications I had in the hospital were major motion sickness and a breathing issue. The breathing issue was caused by years and years of wearing a scoliosis brace, so shouldn't be an issue for you. As far as the motion sickness goes, it wasn't fun but I got through it. I feel very lucky that motion sickness was my biggest issue, you know? I'm sure everything will go fine! The worst part for me was the weeks before the surgery when all I could think about were the "what-ifs." I was completely terrified... but post-op I was like, wow, that sucked but it wasn't nearly as terrible as I had imagined. So hang in there!!! This is the worst part... the waiting. We're here for you, though!!!!!!!
CM, SM, Scoliosis
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Postby donbr » Tue Jun 19, 2007 11:34 pm

Hi Melissa,
My wife was decompressed Dec. 05. she had the decompression c-1 laminectomy and the dura repaired, he didnt need to open the dura but it had a bone pressing against the brain which caused a weak spot so he repaired it.
She left the surgical waiting area at 7:AM and I was told they actually started surgery about 9;30 she was out of surgery about 11:30,
She was then taken to icu for the rest of the day and night which the icu was just for precautionary measures which is always done at this hospital.
I saw her that night and she was in quite a bit of pain but it was being controled fairly well.
The next morning when I saw her she was not in very much pain and she was already reducing her pain medication and her NS said she could go home the next day or the day after, her choice.
she took the extra day.
her pain level at this time is much less than what it was before surgery, she still has most of the typical chiari symptoms but they are very managable at this time with a lot less medication.
Hope this helps a little and good luch and we shall pray for a successfull surgery
Don
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Postby hayla2 » Wed Jun 20, 2007 6:49 pm

Do people not like to talk about their experiences? ???????????? :?:
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Postby butterflyblooms » Wed Jun 20, 2007 7:08 pm

maybe everyone is busy enjoying a pain free summer day! :D

Wouldn't that be wonderful?

Take care
BB
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Postby kiminfla » Wed Jun 20, 2007 7:28 pm

Melissa, I sure don't mind telling you about my experience -- I just feel like I've shared it so often that people tire of reading it! You've probably read it before but here goes:

I had my pfd (suboccipital craniectomy, laminectomy C1, duraplasty) on 9/7/06 with Dr. Green in Miami. The surgery was much longer than expected (was scheduled for 3 hours, took about 6-7). There was more pressure than they had realized. I was very calm going in, I had prayed a lot about it, done my research, and gave it to God. My main concern was my young children. I prayed God please let me wake up. The first thing I said to my dh after the surgery was "I woke up!!!" He looked at me like, "Duh!" He didn't say that, but that's what I remember -- could have something to do with the morphine. :)

Then when I saw Dr. Green he told me how great I did. I said, "As interesting as that is, how did YOU do?" Again, probably the morphine -- luckily, he laughed. I called Mac the next day to pass on a message to a fellow ASAP member who was going for surgery in a few days -- to let her know that it was not as bad as I anticipated and to wish her well.

I was on a lumbar drain for 5-6 days after surgery. For me, that was the worst part. My pain was managed very well in the hospital, the nursing staff was great as were Dr. Green and the many residents that follow him around (My dh and I called them "ducks" because that's what they reminded us of! Truly, the lumbar drain was no fun. I had to lie flat, partly on my stomach with my head turned to the side. The nurses came and turned me to the other side every 2 hours around the clock for the whole 5-6 days. Not restful as you can imagine. I think many, if not most, surgeons don't use the lumbar drain with this surgery so that probably won't be the case for you (I think).

I don't remember which day it was but I sent my dh to Dunkin Donuts (right outside the hospital) for a coffee coolata. When he got back, I noticed the sheet behind my back (I was still sort of on my side) was soaked. Spinal fluid (I guess) was leaking out of my back. The room filled with nurses, residents, etc. and they got that taken care of.

When I was able to get out of bed and walk (with the PT) I did great walking, but I had awful positional headaches. Off I went for a bloodpatch. I just recently posted about that on the bloodpatch thread so I won't bore you with that here. Anyway, I went home after 10 days total.

About 6 weeks post op I had "new" headaches. Was put on topamax and had new MRIs. Well, I lost my vision for four days from the topamax (I've posted about that many times too) :) The headaches gradually went away. I had PT for 6 weeks to get the range of motion back in my neck, work on my posture, and spine education.

Back to Miami for my 12 week post op check up, new imaging studies etc. Everything looked great. Then I had 6-8 weeks where I saw a lot of improvement compared with pre-op. I went back to work. I work in a self-contained middle school classroom for autistic students during the day and I teach Intro to Psych and Human Development at a local college at night.

Now...it's been 9 months since my pfd. Looking forward to my one year post op to find out what's up. I continue to be under the care of a cardiologist (occasional heart palps and intermittent chest pain), a new neurologist (who thinks I still have compression issues), a rheumatologist (who says I still don't have lupus or RA) and my opthamologist (who can't explain the occasional stabbing pain behind my eyes).

Most days my balance is better than before surgery. Not great all the time, but better. My headaches in the back of the head are better. Still get them but rarely. I have hand and arm pain which is worse than before surgery. Still sometimes get the cape pain across my back and shoulders. Still can't tolerate the heat, my blood pressure fluctuates and my heart races at times. (I seem to fit the POTS decription so maybe I have that too). I get some pain in my toes which I didn't have before. The numbness/tingling sensations are better. Still sometimes get the feeling like there is an obstruction in my throat but that's less often than before. I'm sure there are more but as they tend to come and go, when they're not here, I forget them sometimes.

Overall, was it a "success"? I don't know. Would I benefit from more surgery? Don't know that either. If I had it to do over, would I? Absolutely. Because the most important reason I did it was for the chance to be the best mom I can for my kids (and wife for dh too) and my symptoms were progressing rapidly. I continue to have faith that things will improve.

I took the chance...now, what will be, will be and I choose to believe that All will be well.

I pray your surgery is successful and you can have the same sense of peace I had when you go in. May it be a HUGE first step on your path of wellness. Be blessed! Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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