Will I ever recover?!?

[tnt0616]

I had surgery Jan 22, 08 and I am still a shell of myself.  My dr. said that my recovery would not take long, that most of his clients are back to regular lives by 6 months.  I figure I am not regular seeing that I am coming up on the 6 month marker, which also happens to be my 41st bday.  I am in pain most of my days and i have to rest a lot.  I had to quit teaching and wonder if I will ever have the endurance to hold a job again.  My husband keeps reminding me that not only did I have the surgery but I had to recover from mono...which led to the discovery of my acm which led to the surgery.  I guess I would just like to hear from others that have walked this road for encouragement and advice.  I used to be so positive and a firecracker....now I am just a fizz.  

[eej1981]

Hi - I was just hoping for some information and advice on Chiari. I've been having bad symptoms for awhile now (headaches my whole life, but worsened now) and my doctor thinks I may have Chiari. I am scheduled to have a CT scan hopefully next week.

I guess my symptoms all started gradually - I've always had headaches, I suffered from seizures as a kid, and then the headaches became worse as I grew older. It was always assumed that they were from my past seizures. Then, the neck pain began. I've been in physical therapy, massage therapy, and seen a chiropractor. I've even had shots of Lidocaine in the nerve bundles of my neck. Nothing ever really helped.

After I had my daughter, the dizziness began. I couldn't even ride an elevator. When my daughter was a year old, my ears fluttered, popped, and began to ring. It's been 2 years now and no ENT or hearing specialist can give me an explanation.

Recently, the dizziness has gotten worse. I'm nauseous. I can't focus on anything because the pounding in my head makes my vision come in and out. I have such bad double and blurred vision I don't even like to drive anymore. I feel like I've been hit in the back of the head with a baseball bat, and the "pressure points" in my neck are back full force again. I've also always suffered from what I call a "fizzing" noise at the base of my skull. It's always been there, and doctors have always looked at me like I was nuts. Lately, I've been so tired, I sleep 12 hours a night and nap halfway through the day. It's taken a toll on my life and on my toddler's life.

Does my story ring a bell to anyone? I know a CT and MRI are my best bets, but the wait is killing me. I feel like I've been living in a hole for 2 years and I can't take much more of feeling so crappy.

Thanks to you all!

[pandw77]

My daughter is 28yrs. old and had surgery for Chiari stage one in Oct. 2007, then in Jan. 2008 she had surgery again for a leak, then again in Feb. for another leak.  In March she had surgery again to put a shunt in because she was producing to much cerebral fluid.  Since then she has been in the hospital 3 times (she is in there now) for nausia and vomiting.  Did you have problems like this?  I'm sure it is different for everyone.  Every time she goes back in her white blood cells are slightly elevated.  Just need to know if this is common?  I know it's a long recovery, but the Doctors don't seem to know what is causing this.   Just need some answers!!   Thank you Pat pandw77modia

[rozia]

This is not a life or death situation . You will recover if you go by what drs tell you . and dont wait to go to the dr. and dont assume everything is related to Chiari .

[shrlyjo]

I had surgery in 1996 and it was a good 5 years before I felt close to normal. I seen a difference in less than a year but it takes awhile to get back to as close as normal as possible. Don't let yourself get too tired or worn down. Symptoms never fully go away but it does get better. I also had a syrinx so I have alot more problems come from that. I find the worst thing I have to deal with is fatigue...Shirley Jo

[youngwife]

My daughter's neurosurgeon, whom is an expert in Chiari, told us that recovery needs to be seen as a process that can take a year or more.  

Yes, do give yourself more time and also remember that the Mono is a huge factor in this as your body went into the surgery in a weakened state.  So, yes, it is definitely going to take more time.

And, surgery is not a cure for Chiari.....there is NO cure for it.  Surgery is a treatment option with a goal of stopping symptoms progression and a hope of possibly relieving symptoms.

I am very sorry that this has been so hard.  

[jjadqews]

my wife had a decompression in december and she still struggles but she's getting better. my advice is don't forget to live. you will get better. focus on the moments you have rather than the long road ahead of you and the journey will seem faster and more enjoyable. don't lose hope. be strong and realize your loved and considered very special and still have a whole life to offer this world. Don't forget your still needed. To answer your question, your healing process sounds pretty average to me as far as time.

[mombyprofession]

I had decompression surgery when I was 22, and it took me, at that young age, about a year to fully recover and feel like myself again. And, you also had Mono to deal with.

Give yourself more time.

[Shane99]

     I had my Chiari and Syrinx surgeries in April (about 3 months ago) and have not completely recovered yet. I feel better than I did and most of the symptoms have lessened, but I'm still having some issues. Primarily dizziness for me at this point, but I also have some headahces and a few other symptoms.

     My neurologist and neurosurgeon have both said that everything went fine during the surgery, the MRI's look good, and expressed concern and regret that the dizziness is still occuring. They say that it could still go away - that sometimes symptoms can last a year or even more - and I've been refered to an ear specialist just to make sure it's not something completely unrelated, but the basic idea comes across as if it was gonna get better, it would probably already have done so.

     I'm still glad I had the surgery, because it could have led to much more serious issues, like paralysis or even death, but I'm very concerend that I may never get "better". Fortunately, I am at a point since the surgery and recovery, that I can enjoy life even if I can't to the degree I could a few years ago. I'll take what I can get compared to where I was even 6 months ago.

     I hope things work out for you. I read a lot about Chiari surgeries, and so many are not happy tales. The information that I've read or heard suggests that between 80 - 95% of us are considered successful. I suppose I'm a partial success. Maybe only the ones with problems get on these type forums :). The total successes go on with their lives.

[tink71083]

I am in somewhat the same situation as you... I was diagnosed with acm in January of 2008. I was scheduled to have surgery after my wedding in July but my symptoms worsened very quickly so the first decompression surgery was done in march 2008. It was much more complicated that the doctor had anticipated. Not only did he have to correct the chiari, but my C1 was fused to my skull. He had to cut it apart and reconstruct that as well. I went back to work 4 weeks after and only lasted 3 days before i ended up in the ER with all the syptoms returning, plus symptoms of menangitis. I was admitied for 1 week and after a long course of antibiotics and the doctors finding out that the dura graft had a leak in it i had to have a second operation. It had beed 3 and a half months since all of this has happened and I just came back to work. I suffered my whole life with the symptoms especially the leg cramps but no one ever picked up on it. When the surgeries were over and I started to feel better I was able to be more energetic than ever before. This did not last long. I have been back to work for 2 weeks now and all of the symptoms have come back again. I have very little energy and I don't sleep well. I just went to see the doctor for my 3 month follow up and i still have a leak and need more tests. he may have to operate again. I wish i could give you some optimistic view on this. Good luck and get well soon

PS...dana_8142   Thanks for the info on the pillow, I will deffinitely be trying it :)

[dana_8142]

Hello, you are not alone!  I am also a teacher with Chiari!  I feel your pain.  I have not had surgery for my acm, however so I can't give you much advice there.  But one thing that has helped me so far is my pillow!  For mother's day my husband bought me a "contoured temperpedic memory foam pillow" it was $120 but worth every penny.  My chiari was borderline for surgery, I am right at 7mm but my doc has been evaluating me based on my symptoms for the surgery, and I really think my symptoms are getting better, as strange as it may sound.  I have also seen actual Chiari pillows on  www.medpillow.com  they are called "zipper head pillows" designed especially for people who have had surgery, but I found these after I got my tempurpedic, so I don't know how well they work.  Also I should tell, because mine was "contoured" it was a little hard to get used to, but it was worth the wait.  I have had so much success I am saving up to by a memory foam mattress!  I'm telling you, look into a pillow it could be all thehelp you need!  I hope everything works out for you - Good luck!

P.S.  I have heard some insurance companies will cover the cost of the pillow - mine did not, although it is deductible as a medical expense on your tax return if you can meet the criteria for medical deduction and itemize deductions!