Hoping For Some Advice

[Mannas]

I apologize in advance for the long post.  

I learned that I had a Chiari Malformation Type I about 19 years ago when I was 10 at the time. It did not give me any trouble then but I was having really bad migraines at the time and for several years after. The doctor said I should grow out of it once I hit puberty and mature and my body grows and it should create space. Several years later my migraines seemed to slow down and eventually go away for the most part but no other trouble. 

Fast forward 18 years. About 7 months ago I stood up from the bed after laying down and watching tv and had the absolute worst pain at the base of my skull. It lasted about 10 - 20 minutes and then went away completely. A few weeks later I started having headaches at the base of my skull. No sharp pain just dull constant pain, almost like someone was trying to constantly drive a spoon into the back of my head. I started to notice other changes as well. I lost my train of thought easily. I started having issues with my balance. Often I would feel like I was just spaced out.  I would get very tired after going up the steps in my house. 

Something in the back of my head (no pun intended) made me think about the Chiari again. I started researching symptoms and quite a few things lined up. Other things that I would have never guessed would have been related were listed as possible symptoms. The doctor that I have been going to said that I had a CSF leak with low pressure headaches and performed a blood patch. I felt better for about a month or a month and a half and then it came back again and seemed worse this time. I had another patch, this time with fibrin glue a little over a month ago. Now I am taking a ton of Diamox and seem to be having more trouble with high pressure headaches than I did with the low pressure. 

I feel like I am caught in between here. The MRI showed that one tonsil is at 9mm and the other is 4mm. The doctor also noted from the MRI several months ago that I was showing brain sagging but wanted to take care of the CSF leak first and then worry about the other after. Something keeps drawing me back to the Chiari. Is it possible for the Chiari to cause the leaks? When I mentioned certain symptoms she said that was common with the csf pressure being too low or too high.

For symptoms I have had headaches particularly at the base of the skull, pressure behind my eyes, dizziness, soreness in my neck, back pain, sore ankles and knees especially when climbing stairs, balance issues, constant fatigue, ringing in my ears, sleep apnea, poor circulation, constant sinus issues, brain fog, lose my train of thought even in the middle of speaking, excessive thirst, feeling of a lump in my throat when I swallow, swollen lymph nodes on the sides and back of my neck.

I know some of these may not be related symptoms but I guess I was also wondering if they could be. The last one is mood swings. I have noticed I have had a dramatic change in my mood lately. I seem to get angry very quickly at about anything. I know it could be just from stress but wondered if it could have any significance with the Chiari.

Again I apologize for the novel and welcome any help that can be provided.

[selmaS]

  I would venture to guess that the chiari symptoms r being confused for a leak too.......there r just way too many drs out there that do not have a clue about chiari.

Please keep us posted as to what u do find out

  "selma"

[Mannas]

Thank you both for your help.  I really appreciate it.  

Pam – I have not had surgery.  So far the doctor that I am seeing is only treating the CSF leak currently and then wanting to look at the brain sagging and Chiari after.

Have you been happy with Dr. Rosner so far?  My parents are not far from that area so he is an option.  I have going to Duke here in Durham but have not seen anyone that truly specializes in Chiari yet.  

Selma – Nothing that I can think of that would have caused the leak.  The doctor seems to think it was just spontaneous and that is what is causing the symptoms.  She patched three places along my spine.  From what I had read I saw what you had mentioned nose, ear, neck, but nothing about spine.  Does that seem like a correct possibility?

For the brain sagging you may be right.  She may just be using the incorrect terminology.  

There is an NS that is a Chiari specialist at Duke and I think I may reach out to him at least to see about a second opinion.  I was not sure if the Chiari could be causing the leaks or if the leaks are showing similar symptoms to the Chiari.

[selmaS]

  HI and welcome to the Chiari forum.

First I have to ask, did u have surgery?Nething that could cause a CSF leak?...there r some that can have a spontaneous CSF leak....As for the brain sagging....like Pam mentioned that term is one used to describe a post op issue...so I wonder if they r just referring to ur herniation and just r not up on the correct terminology????

A CINE MRI is in order for u and I can see y they would want to correct the leak if that is in fact the issue...do u know where the leak is?...ur nose, ear, or ur neck?

Mood swings...yup it can indeed be chiari especially if ur brain stem is being compressed....

Hang in there and keep us posted on ur progress and dr visits : )
   "selma"

[pamk5]

Hello and welcome!  Well alot of those symptoms do sound like Chiari symptoms.  I think our response pain make make a little more tempermental than we normally are.  I notice I snap at people alot more on bad days.  It is not uncommon for symptoms to cycle either.  As far as the tonsils being asymetrical that is not uncommon either.  I think some specialists will average the total.  Have you ever had surgery?  I ask because the brain slump is something that can happen after surgery if too much bone is removed.  

What I would recommend is that you get a copy of your scans and reports from all that you have had done and make an appt with a specialist.  There is a list here in the forum of docs other members have used and liked.  I will be having surgery with Dr Rosner on the 20th.  They will be able to tell you what your options are better than anyone else.  

I wish you all the best... and again welcome.  I hope you find the support and information here that you need.  

Pam