Chiari Online Support Group

Post op for almost 2 years, back to feeling crappy


#1

Hello everyone, its been awhile since I last posted a message on the forum. I had a Posterior fossa decompressive surgery/craniotomy and laminectomy of cervical vertebrae of c1-c2 back in January of 2014. Anyways I began having gait and balance issues again a couple months ago, before I started back up physical therapy a couple months ago, I was having a couple of small falling accidents. Thankfully the physical therapy helped with my balance since I started it back up.

However for almost a month now, I been stuck in the house and not feeling comfortable driving and not even wanting to ride in the car because I have been getting really bad headaches, neck aches, and back aches. The headaches and neck aches gets worse from bending, turning my neck, and from motion as well. I have also been getting lightheaded and dizzy spells when I'm up standing and moving around. I also been getting a sharp stabbing pain in my incision area, like if I bend my neck/lean towards my girlfriend to give her a kiss, that stabbing pain only lasts few seconds, but the pain from it lingers and radiates to the front of the head.

In the past couple of weeks I have also been getting a lot of tingling in my legs, and some numbness that comes and goes in my lower right leg, last week while I was getting ready for bed, my right foot felt like it became swollen, but it wasn't swollen, so when I was going to bed it felt like my right foot became completely numb, and when I woke up in the morning the numbness spread halfway up my lower right leg, halfway between my foot and my leg, and the following night the numbness spread to a few inches above my knee, it was like that for a few days and went away on its own. When that happened, it felt very strange because it felt like I was wearing a compression sock (I wasn't wearing one though) that was on very tight to the point I was getting a pins and needles type pain feeling, aswell where it felt like my skin wasn't a part of my own body.

Also, I have been getting severe insomnia. Lately I been taking 6 mg of melatonin and 50mg of Benadryl with my 5mg of valium to try to get some sleep and I still been having a very difficult time getting to sleep, usually takes a few hours after laying down in bed, between my brain not wanting to shut off, and from the aches and pains throughout my head, neck and back. Its to the point I hate going to bed because of it.

On Wednesday I had another mri done, now I'm just waiting for my neurologist to look over the results, but I requested a copy so that I could look at the images, and I was looking at them and compared a few of them with my old images from 2013 before having the surgery, and I wanted some opinions/feedback of the images I have here:

(the mri picture on the left is the new images, the mri picture on the right is before the surgery.)

http://i59.tinypic.com/e9vj0y.jpg

http://i62.tinypic.com/20aqt8k.jpg

http://i57.tinypic.com/10y2q80.jpg

in the First image, to me it kind of looks like too much bone was removed and it kind of looks its brain slumping to me, although I'm not sure if its supposed to look like that or not. But in the other 2 photos, it looks like my syrinx is back.


#2

I am no expert, but from the experience I do have from looking at other images over the past 4 months and others experience, I can see slumping and I definitely see a syrinx…From both sets of MRI’s of your thoracic spine I noticed the syrinx (in my opinion). A lot of times a syrinx will go away after decompressing surgery, but not always (everyone is different). Time to address these returning/worsening symptoms with your NS and possibly even finding a new NS if he/she isn’t helpful. Who did your surgery?


#3

Attached is a Chiari NS specialist in your state that has been recommended by others in my groups I’m apart of. She’s a pediatric NS but also takes adults.
33-image.jpg (142 KB)


#4

The neurosurgeon that did my decompression surgery back in January 2014 was Dr. Mark L. Rosenblum of Henry ford. He went on leave a few months after my surgery and his colleagues that works for him handles my case for now. Last Wednesday when I got my mri done, that was ordered from my neurologist, I haven't made an appointment with my neuro surgeon yet. I forgot the name of the colleagues under my neuro surgeon Dr Rosenblum, I would need to ask my mom because I'm very forgetfull and bad with names.

I got 2 cds for copies that has all the images of my mri from last Wednesday, 1 copy for myself and one for the neurologist. My mom dropped the cd off at my neurologist's office to look over, but he didn't get the cd until Friday, so im hoping to hear back soon early this week hopefully, but I should probably ask my neurologist to also send the cd copy to the neurosurgeon as well.

Before my decompressive surgery, the neurologist said I have a syrinx from c2-t12. Although when I had my mri done last Wednesday they only imaged my head and neck, but comparing the mri of the syrinx to the mri before the surgery, the syrinx looks identical. I do remember getting an mri done 6 months after the decompression surgery and it did look like the syrinx shrunk quite s bit, but now it looks like the syrinx grown to the same size as what it was before the surgery..sorry for the rambling and any bad grammar, I've been having severe insomnia and not able to sleep very well. I'm also out of pain meds (Norco that was prescribed from the ER a few weeks ago.) and ibuprofen feels like a placebo, so that definitely makes matters worse trying to get to sleep.


#5

Hi Tom,

Sorry for your condition. Im also planning for Decompression surgery. So quite nervous if the surgery cure my Pain, numbness & balance issues or the condition will be same and get worsed by the time?

Is anyone have any idea about good Chiari Specialists in India?


#6


Hi there, why don't you try to find out the bran anjd spine charity organisation in India through google and finding out from them who would be interested in taking your case..normally the specialist who would like to take this kind of surgery are the one who are brilliant in in
nsh said:

Hi Tom,

Sorry for your condition. Im also planning for Decompression surgery. So quite nervous if the surgery cure my Pain, numbness & balance issues or the condition will be same and get worsed by the time?

Is anyone have any idea about good Chiari Specialists in India?


#7

I ended up at Cleveland Clinic in Ohio with Dr. Ajit Krishnaney, Neurosurgeon. I had excellent outcome, excellent care while in Ohio. I also live in Michigan. No one in Michigan would help me. My surgery was complicated. I was placed in a medically induced coma, and had 2 surgeries, trans-oral decompression, fusion in back of head. Keep the faith. I'm new on the forum, so I'm not sure how to contact privately. If you can privately contact me, we could chat on phone. God Bless and keep the faith... I feel like I am a walking miracle. It has taken a good 18 months for my recovery.



tom88 said:

The neurosurgeon that did my decompression surgery back in January 2014 was Dr. Mark L. Rosenblum of Henry ford. He went on leave a few months after my surgery and his colleagues that works for him handles my case for now. Last Wednesday when I got my mri done, that was ordered from my neurologist, I haven't made an appointment with my neuro surgeon yet. I forgot the name of the colleagues under my neuro surgeon Dr Rosenblum, I would need to ask my mom because I'm very forgetfull and bad with names.

I got 2 cds for copies that has all the images of my mri from last Wednesday, 1 copy for myself and one for the neurologist. My mom dropped the cd off at my neurologist's office to look over, but he didn't get the cd until Friday, so im hoping to hear back soon early this week hopefully, but I should probably ask my neurologist to also send the cd copy to the neurosurgeon as well.

Before my decompressive surgery, the neurologist said I have a syrinx from c2-t12. Although when I had my mri done last Wednesday they only imaged my head and neck, but comparing the mri of the syrinx to the mri before the surgery, the syrinx looks identical. I do remember getting an mri done 6 months after the decompression surgery and it did look like the syrinx shrunk quite s bit, but now it looks like the syrinx grown to the same size as what it was before the surgery..sorry for the rambling and any bad grammar, I've been having severe insomnia and not able to sleep very well. I'm also out of pain meds (Norco that was prescribed from the ER a few weeks ago.) and ibuprofen feels like a placebo, so that definitely makes matters worse trying to get to sleep.


#8

My mom talked to my neurologist today, which he only prescribed me a muscle relaxant and a script for more physical therapy, but I don’t see how that’s going to help my headaches and lightheadedness and dizzy spells. She says the soonest I can be seen by my neurosurgeon is in the beginning of November, and my mom claims that the syrinx isn’t supposed to go away from after the surgery and there’s not much we can do about it (I think she needs to do more research because I feel like she is downplaying my condition). I’m starting to get fustrated with my mom because she is my biggest support and with not being able to drive, there isn’t a damn thing I can do. My question for others here, isn’t the decompression surgery supposed to get rid of the syrinx, and if it doesn’t, does it require a shunt took get rid of the syrinx?


#9

An update, I'm still not feeling any better, I been calling my primary care doctors office every single day now for almost 2 weeks asking why its taking so long for the pre-authorization to go through and given to my neurosurgeons office, but only exuse I get is their working on it and try calling back tomorrow, and if my neurosurgeons' office gotten it already, I could've been seen the beginning of last week, so almost 2 weeks later being held up from getting answers because a dumb piece of paper, its getting soo frustrating. I started back up physical therapy on Wednesday, but have only gotten massages so far because theres not much i can do when im dizzy and in pain.


#10

Hope you feel better someday


#11

Hi there, you must keep asking your mum or your self by putting in writing to keep persuiing it to your health care professional explaining how struggling you are, be persistent, she is yur mum she should be understanding most than any one else...if you put in black and white at least if the health care professional still does not do anything you can start issuing legal no win no fee as negligence for them...they do not understand how painfu having this condition is..there is another website you can go too call patient there are lots of people who has similar experiences just like this website they are quite active from around the world...as the more you join the better you feel..as you are not alone.... Good luck keep fighting..be positive..we all suffering..but dont give up..there are lots of people who are sucessful after decompression but they do not join the sitge as they are too busy with their quality of life..so there is a life at the end of the tunnel....
tom88 said:

An update, I'm still not feeling any better, I been calling my primary care doctors office every single day now for almost 2 weeks asking why its taking so long for the pre-authorization to go through and given to my neurosurgeons office, but only exuse I get is their working on it and try calling back tomorrow, and if my neurosurgeons' office gotten it already, I could've been seen the beginning of last week, so almost 2 weeks later being held up from getting answers because a dumb piece of paper, its getting soo frustrating. I started back up physical therapy on Wednesday, but have only gotten massages so far because theres not much i can do when im dizzy and in pain.


#12

Hi everyone, its been awhile since I last posted, but an update on my situation I finally got to the bottom of things and found answers to what has been causing all my problems over these past several months, I got in to see Dr. Holly Gilmer on march 1st, and found out that I have a bunch of scar tissue from my first surgery causing another csf flow blockage, and there is also a pocket of csf fluid trapped inside the scar tissue, so I'm going to be having another surgery coming up on may 16th, although I wish it was a lot sooner.

since I made this topic a lot has happened, the day after thanksgiving I went into the hospital for a week and they performed quite a few tests, and more mri's of the whole spine and head and cine flow, and also did a lumbar puncture, but the doctors over my care in the hospital definetly were not experts in chiari malformation. So after the hospital I was discharged to the inpatient rehab facility my mom works and was there for a month and a half because I became so weak and immobile. But when I was able to see Dr. Holly Gilmer, she gave me hope and may sound weird saying this but I cant wait to get the surgery so hopefully I can get my life back on track. I apologize about not replying back sooner, as its hard to think with a lot of brain fog and fatigue.