Chiari Online Support Group

So many questions

Christy,

Wow...when I got like 4 sentences into ur questions, my heart sank and I got chills! You have gone through exactly everything I did. I had my initial surgery in May 2010. It was rough! I honestly didn't think I was gonna live to make it home from the hospital. I live in Spartanburg, SC and my neurologist was honest with me from the beginning and told me how rare the surgery was but that he was certain I needed it. (My symptoms were interfering with my daily life). The pain after surgery was so bad I begged the dr to knock me out and put me in a medically induced coma! Of course he wouldn't. I don't think the nurses knew anything about my surgery or Chiari. It was almost like no one knew how to care for me.. It was hell. Anyways, about 6weeks after surgery my incision started leaking spinal fluid so bad my entire shirt was soaked within minutes. I had to have another surgery because I had developed TWO leaks. I, too, got an infection but didn't have to have a central line. Fastforward 3 years and here I am. I'm alive but not well. Unfortunately, I had to be out of work so much I lost my job, have continued headaches, I have no short term memory, I've gained 25 pounds, and developed severe depression. I don't know what to do or where to turn because I have no insurance as I have no job. I'm a single mom to an 11 year old daughter. I want my life back. I know I sound like Debbie Downer, but I just need to hear someone say that I will get better...or just anything positive. :)

Mornin' Nunya, After surviving 15 hernia/infection and repair surgeries in 3 yrs the one positive thing I can tell you is that a hopeful attitude is crucial! I'm newly diagnosed and reading your stories scares the hell outta me...idk where your at in your faith...but pray...and if you can't pray for yourself...then ask others to pray for you! I do have some other "on the positive side of a bad situation" information I would like to share privately...perhaps give you some hope...thx Headed to work for now,,,will tag up ltr...

Hi Christy,

I also had meningitis post op and had to be readmitted to the hospital. It was not fun but I think you are correct that the meningitis and dehydration cause the confusion and hallucinations along with the remnants of the post op drugs. May I ask, besides the neck pain, what symptoms are you having that are new or old? Are you any better than before surgery? Have you had any PT to deal with your neck pain?

Kate

Hi Kate.I did go to PT for my neck pain and they discharged me after a few months due to me plateuing in care. Old symptoms that returned are: severe headaches, body aches, sensitivity to ligjt, tingling and numbness in arms and the feeling of floating.
New symptoms: burning in back of head and neck, frequent urination, very short fuse and depression. I also can’t seem to regulate my body temp very well. Either reallu cold or really hot no in between.
And of course I still have horrible memory and troible getting my words out. The confusion is like I have the mind of my 85 year old grandma.

Christie,

How are you doing? I also had a CSF Leak and Meningitis and had to be taken by ambulance 6 hours to Pittsburgh to see my NS after being hospitalized here for two weeks. It was a few weeks after my MVD Surgery. I understand and am so sorry you had to go through that.You aren't alone I Promise !!!

Everyone on here talks about having a neurosurgeon. Do you guys have regular follow ups after surgery or just for the first 90 days following surgery? I’ve had none. However after several several phone calls and lots of insistence I was finally able to get one scheduled with the doc who did my decompression surgery in 4/2012. I have so many new and worsening symptoms I figured this was the best place to start? Appointment scheduled for 10/1…

Hi Christy,

My neurosurgeon, who has a very busy practice, saw me at 4 weeks, 3 months, 6 months, 12 months, then every 6 months until I just recently told him I didn’t think I would need to come back again. He told me to make an appt. if I ever have any problems and that he will be glad to see me. During these past few years he has helped me with muscle and nerve pain management and with PT suggestions to strengthen my neck and shoulders and back to ultimately reduce my neck and head pain. I am really sorry that you have not had a Neurosurgeon who will follow you. I just don’t understand why some won’t see their own patients post surgery. I definitely think you are smart to get back in to see him if you can. If he is no help, do you have a good neurologist?


Christy1975 said:

Everyone on here talks about having a neurosurgeon. Do you guys have regular follow ups after surgery or just for the first 90 days following surgery? I’ve had none. However after several several phone calls and lots of insistence I was finally able to get one scheduled with the doc who did my decompression surgery in 4/2012. I have so many new and worsening symptoms I figured this was the best place to start? Appointment scheduled for 10/1…

awe Luvbug I'm just now seeing your reply! I would love for you to share whatever you can with me. I was not ignoring your reply, I just didn't know you had replied til now.

But to answer your question, I do pray...ALOT, and ask anyone else who prays to pray for me.

After re-reading my reply to you from August, I apologize. I should NOT have unloaded on you (as a newly diagnosed Chiari sufferer) like I did! I probably scared the crap out of you, so please accept my apology!