My Story

General
1

Hi everyone. This is going to be a long thread. Hope you don't mind. I have a lot to say.

First a bit about me. I'm male, 33 years old and from London, England. I don't work, but I'm active. I suffer with constant headaches, severe/suicidal depression, insomnia, Body Dysmorphic Disorder (BDD), Obsessive Compulsive Disorder (OCD), mild social anxiety, mild agoraphobia, muscle aches everywhere, restless limbs that sometimes keep me awake at night, bad balance and some dizzy spells occasionally, severe lack of concentration and constant nausea (rarely leading to vomiting.) My hearing isn't that great either and I've always felt I'm underweight. When I was a teenager/early 20s I was 5'11" and weighed 10st (140lbs). Now I'm just over 11st (156lbs), which isn't ideal to me, but tolerable.

I'm play a lot of sports, despite severe pain. Without sports, I think I would've taken my own life a long time ago. I play football (soccer) at least once a week and end up with the most excruciating headaches for the rest of the day afterwards. My mother (who died 2 years ago) suffered with bad headaches too. She also developed a bad case Schizophrenia and depression later in life.

Over the past few months I've been going to a drug & alcohol clinic because I thought I was addicted to Codeine which is in the strong painkillers I constantly take for my headaches. I have had a headache every single minute or every single day of my entire life since the age of around 10. That's about 23 years. These headaches fluctuate in intensity all day depending on when I take the Codeine. Currently, I take around 80mg of Codeine a day, which the drug & alcohol clinic says isn't a lot actually.

About 6 weeks ago they gave me two options. Taking Subutex to rid myself of the Codeine addiction I thought I had, or having an MRI scan to make sure there isn't anything else causing the headaches. Being 33 and feeling as though I have wasted my entire life, I'm surprised I didn't take the quick fix solution of Subutex. But I did go with the MRI scan.

Last tuesday my doctor called me and said I need to go see a Neurologist and that he's found something that may be causing my bad headaches. I asked what it is and all he said was "a low lying Cerebellum."

I have no idea what this is and what is going to happen to me. I've done a bit of research online, but I can't seem to concentrate on it. All I know is that I may have to have brain surgery to correct it and the recovery will be long and arduous. And with surgery there's a chance of paralysis which is unacceptable to me. I won't have it if there's a significant chance of that.

My doctor gave me a referral to see a Neurologist and I called them yesterday. The earliest appointment they could give me was August 7th, which is ridiculous. I have to wait 6 weeks to find out just what the hell is wrong with me and what they found out on that MRI scan.

My life has been turned upside down. But I have never led a normal life (nor did my mother) and now it's refreshing discovering that there may be a reason why.

I have a few questions if you guys don't mind. I don't know if you can answer them, but it's worth a shot...

1. If I have brain surgery, what's the likelihood of paralysis or brain damage?

2. How long will a full recovery take?

3. After I have fully recovered will I be able to play football/soccer again and will I be able to box or compete in martial arts?

4. I've always felt stupid because I can't concentrate on anything for long. I've read 3 books cover to cover my entire life. Will the surgery improve my intelligence and concentration?

5. Are there any links with a low lying Cerebellum and Schizophrenia?

6. Are there any support lines I could phone to get advice from knowledgeable people who could put my mind at ease?

7. If I need surgery, is it worth putting it off for a few years and waiting till technology is a bit more advanced?

8. Will my symptoms get worse if I put surgery off?

These may seem like stupid questions to you, but I really don't know much.

By the way, I never drink, smoke or take any other form of drugs except the Codeine/painkillers.

Thank you for listening.

2

Thanks for answering my questions Emma, I really appreciate it.

I don't know if it's a Neurologist or a Neuro Surgeon or who I'm seeing on August 7th. I'm not up with technical terms. I haven't bee told hardly anything up until this point... and that's what's really bugging me. I also had no idea tonsils have anything to do with this.

Thank you for your advice. :)

3

I just spent 3 hours researching your questions and it deleted when I posted it.....That makes me not happy....I will rewrite it tomorrow. I researched questions 4 & 5 in depth. You will be surprised at what I have learned and the studies that have been done on those topics. My head is hurting or I would redo it tonight. Sorry.

4

Try Midrin for the headaches if you can. I found this works fast and very well for me, but it is pricey... It is a combo drug, vaso constrictor, anti anxiety and acetaminophen mix I believe. It is a narcotic but I haven't had any addiction issues with it and I have had street drug addiction issues in the far past. I aslo have tried Butol which is a phenobarbital derivative, it is also a combo drug, commonly used to treat seisures. It works slowly and doesn't last for long but it is cheap. I hope this helps to give you some alternate options for pain relief now that you have the Chiari diagnosis.

5

You can request your scan results and report yourself directly from the facility if this will temporarily put you at ease. They can be kind of confusing but getting to see the disc pictures and actually read the scan reports actual words has helped me imensley. It also helped me to get my childs diagnosis. The docs said she was negative for Chiari via CT scan but the report was contradictory so I pushed for MRI and low and behold, she was diagnosed with 9mm Chiari!

You are your best advocate, stay calm, self educate when you can and trust your gut when it comes to your health. I wish you well...

6

Hi Shogun,

Let me start by saying surgery is not recommended for everyone diagnosed with CM. If your PCP is sending you to a neurologist instead of a neurosurgeon and he used the term low lying cerebellum, please consider they may take the "Wait and See Approach."If they do ask them about symptom control and what their plan is to monitor your CM. Codeine is very addictive and not a great drug to control CM symptoms. I would recommend you see a pain mgmt. specialist.

Please know Chiari Malformations are subjective. Everyone's experience is different pre and post surgical.

1. Paralysis is possible with CM pre and post surgical, but not common.

  • Arnold–Chiari malformation, or often simply known as Chiari malformation, is a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating [1] hydrocephalus as a result of obstruction of cerebrospinal fluid (CSF) outflow.[2] The cerebrospinal fluid outflow is caused by phase difference in outflow and influx of blood in the vasculature of the brain. It can cause headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea, impaired coordination, and, in severe cases, paralysis.[3]

http://en.wikipedia.org/wiki/Arnold%E2%80%93Chiari_malformation

1. Brain Damage post surgical? There are many levels of brain damage. Having CM damages the brain. CM Decompression Surgery can cause Brain Damage but you would need to discuss that with your NS and ask them the risks you personally will be facing from your surgery. Anytime they cauterize or surgically cut your brain tissue you are left with damaged tissue. Also listen to the podcast on the main page. I will give you the link I asked about CM & the possibility of Ataxia. Anytime the Cerebellum is damaged it causes various problems. A general rule is the worse your CM is the worse pre and post op symptoms and side effects you will have.

http://4mind4life.com/blog/2008/02/22/50-things-that-kill-brain-cells/

Rare Genomics Podcast- halfway down the page.

http://www.chiarisupport.org/

2. Recovery is subjective. Again it depends on the severity of your CM.

3.Soccer is debateable. I would never head butt a ball again and Soccer is very much a contact sport. You will need to decide with your NS. Boxing absolutely not. I talked to a friend about CM and Martial Arts three days ago...He was very experienced and had to quit. I would wonder if these sports are safe just being diagnosed. There are instances where trauma has made herniations worse. Definitely ask your Dr. I love sports & fitness and have played every sport possible my whole life until 2001 when I became ill. I know how important sports and fitness can be to you life & identity just please be careful.

4. Intelligence will not improve post surgical. Concentration can improve but it is significantly higher in children than adults.

Cognitive Function in Chiari Malformation
A $75,000 grant awarded to Dr. David Frim, at the University of Chicago, to address one of the most pressing questions Chiari patients have: Does Chiari affect thinking, memory, and concentration? Dr. Frim and his team utilized neuropsychological testing on both children and adults and found that while overall intelligence was normal, there was a specific, identifiable pattern of weakness in certain types of verbal memory and executive function. In the children, these weaknesses improved significantly after decompression surgery, but with adults not as much. This type of research is very expensive and a more subjects need to be evaluated to further define and strengthen their findings.

5. Yes.

http://en.wikipedia.org/wiki/Cerebellar_cognitive_affective_syndrome

http://en.wikipedia.org/wiki/Causes_of_schizophrenia

http://psychiatryonline.org/data/Journals/AJP/3761/1023.pdf

http://www.hy-q.com/cooper/pdf/NCS%20Exam/208%20Disorders%20of%20the%20Cerebellum%20and%20its%20Connections.pdf

http://www.plosone.org/article/info:doi/10.1371/journal.pone.00122334

http://www.freedomtoheal.org/2013/04/the-brain-and-cerebellum-by.html

6. There is one CM Support Telephone number. It is new and I don't know anything about it. I will ck it out tomorrow and let you know how knowledgeable they actually are.

7.No

8. yes, That's why people have to have surgery in the first place their symptoms over time gets worse and can become very serious.

7

Tracy, thanks so much for the information and typing it all out again after it deleted last night. I really appreciate your effort and you've helped me a lot. I have a lot to think about.

I've been taking Codeine for 23 years and now the results of the MRI scan have revealed why. I may or may not be addicted, I have no idea. But switching to Midrin or anything else may be a lot easier said than done. But I'm definitely going to look into getting off the Codeine because I know it's unhealthy.

8

Switching to a medication that actually works may be easier than you would think. Maintain the mindset that you have the power of knowledge now to better help yourself to cope with the pain in a healthier way. The doors for realistic treatment have been opened for you. I dealt with symptoms which were incorrectly diagnosed for years and dealt with drug addiction in the past. I am now feeling better as I have medications designed for my pain and have to use them far less frequently due to the fact that they really help! Keep the faith and stay strong, we all wish you the best!

9

I am not sure about the surgerts in England. I went to dr John Oro in Colorado. My neurologist said he was the best after doing some research I found out that he had not lost any of his patients and non of them were paralysis or had brain damage. The surgert did tell me before the surgery that there are always risks to any surgery and with brain surgery the risk are higher for problems such as mentioned. It made me feel better that he had a good record. Hope this helps. And your neurologist may want to try other options. Such as different types of medicines and physical thepory. I know going though all of the headaches and pain and dizzyiness is very depressing. I can also identify with the OCD. What helps me with the depression is prayer and focusing on the Lord also my sunday school class helps encourage me. and they are there for me.