New symptoms scared !!

Brain and nerves
1

Hi I'm 35yrs old woman I was diagnosed back in July 2015 and had my decompression surgery 2mnths after. Almost a year later and I have a lot more symptoms than before. My neurosurgeon is done with me. 😢 . praying that this new team could take my case in Cornell brain and spine hospital . they are suppose to be the best.

My symptoms went from the basics to extreme pain on my neck and shoulders. Nauseas, dizzy spells, chronic nervepain all over. Sore muscle . aching joints. Can't move my neck as much because that would make me weak to the point I have to stay in bed for a week. Talking , coughing, laughing ,everything bothers. I am getting this pain in my throat radiates up to the side of my head.

Someone please help. If u are feeling these symptoms what do u do for a little relief due to the fact these doctors don't help.!!!

2

Go see a different neurosurgeon. Get an MRI!!! If you had a dura patch put on the previous surgery, it may be shifting- sometimes the cerebellum slides down. Don't give up!!! Most doctors don't know what Chiari is, don't have any training re: it. You may have to educate them. 

3

Hi Anna, I am sorry for your pain, just copy what linlel have wrote here. But doNT GIVE UP..BE POSITIVE, it will be sorted..!!!

4

Thank u. I actually am seeking second opinion. On the 28 getting an MRI done on the back of my head. Pain most sever there

5

Thank u . it's hard at times. Everyone around me has no clue. But I'm getting an MRI done on the 28 see how that goes.

6

I'm copying what I posted to someone else: 

Chiari can reoccur depending on what your first surgery did. It doesn't go away, the surgery just makes the space larger. Depends on your symptoms. Most doctors don't know much about Chiari and don't have many patients who have Chiari. The best thing to do is Research and Read up on the condition so you know as much as your doctor. Get the hospital to give you copies of your MRI's and other test results. I can get all my test results online and then if I don't know what they are saying- look it up.

Here's what I went through:

1. Oct. 2015- I told my GP doctor I needed a brain MRI because I had dizziness, disorientation, other symptoms that I couldn't explain. So they sent me to get one. (It's good to be assertive with doctors, especially residents!!)

2. After MRI results, got set up with Neurosurgeon.

3. Neurosurgeon had minimal experience with Chiari and didn't think my symptoms were severe enough- sent me to a Neurologist.

4. Neurologist had me go through a load of tests to see if I had some other disease: lumbar puncture, tilt table test, balance test, visual screening, Cat scan of arterial flow. After all these came out negative, finally referred me to different Neurosurgeon to have cisternogram. 

5. Viewed results of MRI cisternogram online and result was complete blockage of CSF on right side. Tonsil 8 cm. 

6. Went in for consult with Dr. and he suggested surgery due to CSF blockage. 

7. Had surgery June 2. 

I had a dural patch put on. So I'm guessing that is because of the blockage of CSF flow. They had to go in and unblock it. 

In my experience, doctors don't return phone calls, assistants are rude and unhelpful so PESTER THE HECK out of them!!! Pester, pester, pester until they call you back. My doctor's assistant never called me back- I CALLED HER!! I pushed to get the appt. to have the MRI Celle done. I Called repeatedly to find out what the doctor had to say about the results. I pushed to get the second consult. I pushed to get the surgery scheduled asap. 

Good luck!

7

Hi

I have a Chiari 1 and I have the same symptoms as you mention, but i have not had the decompression surgery.

Takes very little to aggravate the symptoms. I tried physical therapy, it made them worse.

What helps me is my TENs unit, muscle rubs like Biofreeze, Badger sore muscle rub, white willow bark capsules, being in the water I live near the ocean, doing things i love, being with people i love, getting a lot of rest, drinking a lot water, eating healthy food, magnesium, and not doing things that aggravate my muscles, examples making beds, bending over to pick things up from the floor, lifing, etc.

Best wishes

Marie

8

Hi I noticed that when I do those things my symptoms get worse . what can I do when I'm the only one home. I try my best not to bend down or get upset.its hard. It's like turning off all your emotions.

Sad the only things doctors know about chiari is straight surgey. I had my decompression surgery back in aug'15. Its going to b a year now and I'm worse than ever. Getting an MRI done on the back of my head. The pain is worse

9

When you bend over, it makes the headache worse cause of the change in position. Get one of those long picker-uppers to help pick things up. Or get a little garden stool with wheels to get around the house- I have three of them- makes it easy to deal with cleaning or things on the floor. 

If you already had surgery and are getting symptoms back, their may be CSF leakage. It can be extremely painful. 

Good luck and hang in there!!!

10

Get your family practice doctor to order up some hydrocodeine for the pain. Or Naproxin Sodium 500mg.  I stockpiled two bottles before I had surgery. I have found that Neurosurgeons can only do surgery and don't really have time or ability to order up drugs. If you had a dura patch put in during your decompression surgery, it may have come loose. 

Be assertive with doctors and tell them you need a MRI cisternogram which is a video of your brain- it shows if there is any CSF flow blockage. 

Most doctors are very limited in their understanding of Chiari and are happy to blow off your symptoms and pretend they are caused by something else. 

I had my decompression done at Goodman Campbell Brain and Spine, which seems to be much more informed about Chiari than regular neurosurgeons or neurologists. 

11

Wow thanks this helps a lot. When I see my neuro I will tell him this. N praying nothing is wrong

12

Glad to help. Also, if you get test results back, try to research what they are saying. I find it really helps to know what is going on in your head- plus it is easier to discuss things with your doctor. Alot of your symptoms sound like CSF flow blockage or perhaps the dura shifted. Some people have more than one surgery, unfortunately!! There are some good sites online that explain things like cisternogram. There are also some large companies that specifically address brain and spine issues. I would suggest plugging in Chiari and seeing what good stuff you can see. I can't give you any links cause that is not allowed. Good luck!!!!

 

13

Hi ana50347 🤗

I can honestly sympathise with what your going through. I for the last 2 years were experiencing the same symptoms, the pain would get me to the point I didn't want to live.

I was referred to hope hospital I had decompression surgery it hasn't worked, Dr Bukhari has been great I'm back in for the 2nd operation duraplastomy on Friday. You know you're own body keep asking for second opinions. I was on my 4th opinion before any one would listen to me. Good luck 😊