Intro and symptoms and Dr. Tew :)

[ajunebug]

Hi there...I just wanted to introduce myself. I'm a 29 year old woman. I was diagnosed with CM1 2 years ago. I've had cervical and shoulder pain daily for years with no known cause. But it wasn't until I started having nerve issues in my hands and pressure in my head that I got my diagnosis. I seriously thought I had a brain tumor because I was getting headaches and felt a heaviness/pressure at the base of my skull...that led to the MRI and a diagnosis. I ended up seeing Dr. Di at the Cleveland Clinic. My herniation is "well over 10mm"  according to him...he couldn't tell the exact amount by the images. He's just left the CC though, so I am about to see Dr. Tew in Cincinnati, Ohio. I do not know if I have a syrinx, but will be having a full spine MRI and cine MRI before my next appointment. I currently only have a head/cervical MRI. I suspect strongly that I have a syrinx due to my symtoms.

I am leaning strongly towards the surgery. I have had a rapid progression of symptoms in the last few months, which I believe were exacerbated and  brought on by my last pregnancy. The numbness is almost constant in both feet and my right arm and hand. The pain in my neck and shoulders (cape area) is horrible and I have to take narcotics daily, and am still in pain. The pressure in my head is much worse, and is now in the front and top of my head. And my eyes are very painful...I can't really look to the side, up, or down without a lot of pain and discomfort. Only straight ahead. For years I've a swimmer and I can't even swim laps now, because of the pain in rotating my head to breathe, and the pain in my spine during flip turns. :(  I'm hoping that I might find some relief in surgery. I'm scared of decompression but I'm also scared to keep progressing. I'm already very anxious at the thought of these symptoms possibly not being reversible.

Anyway, nice to meet all of you. Was wondering if anyone has had symptoms similar to mine and if decompression helped. Also if anyone has experience with Dr. Tew? He's about 4 hours from me, but I don't know who else to see now that Dr. Di left Cleveland.

[selmaS]

  If u r itchy it may be an allergic reaction...be careful...plus, if u r becoming so immune to meds now, how will they work post op.This could be y they do not want u on strong meds now, even tho u may need them....but goodness what a mess for u to deal with.

Aww I wish I could offer u some help....I can relate to what u r going thru and u will come out the other side : )

I am sure the pressure of the excess fluids had an effect on ur chiari symptoms, and it was good u had a C-section.

Hang in there  and rest : )

  "selma"

[ajunebug]

Hi Selma - I've had c/sections, actually. I had severe pitting edema when I was pregnant with the twins, and I think the increase in fluid had a lot to do with my onset of symptoms.

I had a really frustrating day at the pain clinic today. I've been taking vicodin as needed (anywhere from 2-3 pills a day, depending on the day). Today the doctor refused to refill my Rx until I try Lyrica first for my nerve pain. Which - I'm fine trying Lyrica, but I still NEED something for daily pain. He said, "Take an Aleve." Um, seriously?!? He obviously has no idea what level of pain I'm dealing with here on a daily basis, though I tried to tell him. I'm going to my GP next week and hopefully he will write me an Rx for pain meds...I actually think I need a bump from vicodin to oxycodone because the vicodin is losing its effectiveness for me. It also makes me extremely itchy if I take more than 5mg at a time. But of course, I'd rather be itchy than in lots of pain! Anyway. Super frustrating experience to have serious chronic pain and be told to take OTC meds at a PAIN clinic. I mean, sheesh - that's why I'm THERE - because OTC meds don't cut it! :( The doctor seriously acted like I was just trying to get drugs.

My eyes hurt soooo bad today. I am actually gonna go to sleep very early tonight just to get away from the eye pain and pressure. Someone decompress me, please!!!

[selmaS]

  Did u have a vaginal birth...it will add to the strain and cause the symptoms to be aggravated.....once we chiarians have a chiari dx, it is recommended that we have C-sections...but , u also were pregnant with twins...the pressure from that is enuff to set off the symptoms.

  "selma"

[ajunebug]

Thanks so much for responding! I should add that my symptoms (nerve hand pain and head pressure) began when I was pregnant with twins, were relatively stable after, and just this fall when I was pregnant again began deteriorating more. I think in my case the development and progression was linked to pregnancy - probably the extra fluids, weight, and toll it takes on the body? Is this common for women with CM1? Obviously I do not plan to be pregnant again, at least not until after I am better and/or have been decompressed.

I will update everyone about Dr. Tew and my full/cine MRI. I will have those done before I see Tew, so he can do a proper assessment at the appt - since it is quite a drive for me.

[selmaS]

  HI and welcome to the Chiari forum.

I have heard of Dr Tew...all good, but nothing personal...so do keep us posted on what u think : )

All surgeries have risks, but once u have a dr u r comfortable with and knows and is well experienced with chiari u should be able to relax a little....as I know from my own surgery, it is scary, but u do see benefits and they continue as time goes on.

Ur herniation is rather long, but is it the shape and width that would be more an issue....if it is causing a CSF obstruction, which ur CINE MRI will help show.....

Please keep us posted on what u find out....

We r happy to have u join us, but we r not happy with the reasons that bring u .....

    "selma"