I'm back!!

[Krystalchiari85]

Hello chiari community. Some people may remember me as dead memory. I used to be on the forum quite often until my surgery in 2011 by Dr. Ellenbogen of Seattle, WA

Sadly, my symptoms have progressively became worse, I am well aware that CM is a progressive condition.. Some old symptoms as well as new. My neck will swell sporadically, I've been recently Dx with severe sciatica as well as a muscular disease. Not positive if this is CM related. I've lost sensitivity of hot and cold and my vision is remarkably worse. I am 20 weeks pregnant and I'm almost positive the pregnancy has amplified these terrible symptoms. I'm choking all the time, especially in my sleep.

Needless to say I'm at my wits end and don't know what to do.
Some advice would be appreciated

[Krystalchiari85]

I haven't had an MRI for roughly 2 years, I didn't have a formal follow up with Dr E post op, as my ex Jake said I was fine because I had the surgery. He thought I was magically cured. I did develop a pseudomeningocile post op and I am not sure what became of it because I haven't had a scan since it was discovered. I am sorry I haven't been on the forum for awhile my boyfriend and I just moved into our own house. It's such a cute little house, it was remodeled recently and it's absolutely beautiful. It's nice to not be in an apartment anymore. Poor guy, we did have help but he is so particular he did a lot of the move. He wouldn't let me do anything but supervise. I felt bad for the guys, it was raining buckets. We are having a BBQ tonight for those who helped.
Anyways, while I was with Jake I did request tests for POTS and EDS. Of course my doctor looked at me like I was making up medical conditions and would just give me a huge quantity of pain meds and out the door I would go. I was getting tired of taking the meds. I knew I had CM, but I wanted to know what else was going on with me. I ended up "firing" my doctor and returned all my pain meds back to the pharmacy. There comes a time when taking narcotics gets old. So I did a lot of holistic home remedies for pain. Nothing seemed to help. My boyfriends sister told me about Kratom. I had never heard of it and was skeptical. So my boyfriend with his nursing background went to the place that sells this Kratom and interrogated the poor sales people. Lol. He does appear to be "intimidating" if you don't know him. He is also a tattoo artist and he is covered in ink. He ended up feeling bad of course for the interrogation but he learned that this Kratom was 100% organic and has multiple purposes. There is nothing synthetic in it at all and it's not habit forming... Well it's not supposed to be, but some people have very addictive personalities so I guess it could be addicting to some. Well he purchased a small quantity of 10 of the Kratom filled capsules and brought them home. He told me to try one to see if it helped my pain. He was desperate, this was a one week stretch of pain and he wanted me to be comfortable. So I did, the capsule tasted like oranges. About 20 mins later I noticed that the pain intensity went down significantly and I didn't feel weird as most narcotic pain meds make me feel.
I told my doctor about it and he was supportive of me taking them as they're completely OTC and legal.
Anyways, I'm gonna relax awhile longer then I'm gonna start working on our bedroom. It's a frightful sight :-)

[zygy2]

So many of these comments hit home!  I would try to find out about EDS, that seems to be what caused all of my post op issues and that seems to be the source of the weird blood pressure and high heart rate ( I also have a POTS diagnosis)  My daughter has also had the EDS and POTS diagnosis and she gets random fevers from NOTHING!  It makes her feel horrible but can go away very quickly.  I remember when I was a kid I did the same thing, it bites!  Have you had an MRI done to rule out pseudomeningocele?  I know mine was causing all my symptoms to continue.  Good luck with things, it can get very frustrating at times!  -zygy

[selmaS]

  So sorry to hear u and Jake did not work out....and that all is well with ur new little one....I am sure his big sister is looking forward to a baby brother.

Change o f BP can also be POTS so do ask about a tilt table test when u see ur Dr.

[Krystalchiari85]

Yeah, unfortunately things between Jake and I didn't work out. I have nothing bad to say about him, and I'm grateful that he helped me during my surgery and post op. I think things with my health got to him and we argued a lot. I have been through the ringer so to speak. That's basically why I haven't been on here in so long.
I've been dealing with a 2 week unrelenting HA and stiff neck.. With weird spotatic fevers, ranging anywhere between 99.9-103. I have stumped all of my doctors. I have a new doctor now whom I will be seeing late October. I'm hoping he will find me a Neurologist and refer me back to Dr E. I need a current MRI and Cine MRI. It's been about 2 years since I've had either. My doc seems to think I have MS. I'm hoping he is wrong.
My BP has been very high lately.. So has my pulse. I've been having a lot of Tachycardia attacks lately. I'm sure pain and CM are the cause.
On a happier note, my baby boy is thriving and is growing appropriately for his gestational age. I'm 21 weeks.
Hope my CM family is well.

[selmaS]

  U left?....Is that y we did not hear from u, I had no idea u were with someone else....
WOW a nurse, u r lucky with all u r going thru, someone that can help take care of u....hope he learns all there is about Chiari and ALL the related conditions,

I agree with Mel that EDS is most likely an issue u need to look at and rule out as the muscle issues could be EDS.

[Rylanesmom]

I'm glad to hear that:)

[Krystalchiari85]

Yes I have planned a c section.

[Rylanesmom]

Are you planning a Caesarian?

[Rylanesmom]

EDS causes myofascial pain. I still feel you may not have a complete diagnosis. Most Drs don't understand or know EDS. Since they did not do a duroplasty and you had pseudomogocille (sp?) with continued problems without follow up with Dr E I think starting there would be a good start. Unfortunately most EDS patients suffer without diagnosis and I know that I will forever be in pain and continue to need surgeries. An example of myofascial pain is when get a pedicure and they rub my legs I hold my breath because them rubbing lotion on my legs hurts so bad. It sounds like you might need to find somewhere to build a relationship with 1 doctor as they tend to learn with us and if you see a new dr every time that is not happening.

[Krystalchiari85]

Hello ladies, so nice to hear from you all.

I did leave a year ago, Jade is wonderful. She is beautiful and very smart. Thank you for asking! The muscular thing is called myofascial disorder. I don't know much about it except for the brief detail the doc has given me. I do believe an MRI is ok during pregnancy, ct scans are not.
My issue is the same as it was before, my insurance is giving me a hard time, I've been jumping through a lot of hoops. Eds was not ruled out prior to surgery. I had a lamiectomy and a crainectomy, the HA's have gotten significantly worse. They last for weeks and the swelling of the neck comes and goes. The clinic I go to now is always booked several weeks out and I see a different provider during each visit.
I still have to explain what CM is every time I see a doc.
I'm hoping I can get a referral to see Dr E soon after I have my son. The pressure in my skull is so painful. I have a good support system, and the guy I'm with now has been a nurse for 12 years. He wasn't aware of CM, but he is helping me emotionally. This pregnancy has been a rough road, not only with the CM and sciatica but there has been complications throughout. Being in this much pain probably doesn't help anything. My ob doc is trying to do what he can, but in the pregnancy itself. I'm currently looking for a new physician.
Thank you all, it's good to hear from you ladies.
May I ask how you all have been?!

[Rylanesmom]

Hey Krystal don't forget that we thought you needed checked for EDS. Which also can cause sciatica problems and patch rejection. I tried and tried to contact you and finally got ahold of Jake and found out you had left. I hope things are well for you. Dr Diane Mueller has book on chiari in pregnancy too. She works for Dr Oro.

[selmaS]

  Hey Krystal !!! How is ur sweet little girl? Jade, if I remember right?

I am so sorry ur not doing well....did u rule out ALL related conditions b4 ur surgery...sorry I do not remember all the specifics.....

What is the name of ur muscular condition?

Congrats on the pregnancy....and u r  right as a change like that to the body can make symptoms flare....

I wonder if the swelling could be a CSF leak.....not sure  and the above poster asked many of the questions I would be asking too, but do not want to repeat them all....so do reply to her questions and I will have a better idea of suggestions....not sure tho....

So glad to hear from u again.

[ninigrli]

So sorry your goin through this. I can't even imagine how you feel.

What stages of surgery was done? For example Leminectomy? Duraplasty, cranioplasty? Being your pregnant can u have an MRI? Also if the answer is yes, can you have a CINE MRI done?

What type of Muscular disease where u diag with? Also did your smyptoms return when u go pregnant? Again I am not sure if one can have an mRI done while pregnant but def try to locate a chiari specialist. Am seeking a second opinion after a previous decompression that have left me with strange symptoms that I never had. Am also seeing a dr to rule out muscular disease.

Pls keep us posted.
Thanks