I’m a 34 yr old male who just got diagnosed with Chiari yesterday. I have approx 7+mm herniation.
My story is long but I’ll make it short.
2002 started having severe anxiety and panic attacks. Also short bouts of “tension headaches” and nausea.
2004 started with vertigo, nystagmus, severe nausea and anxiety and panic attacks. MRI showed low lying cerebellar tonsils by 3mm.
Dec 2011 stomach issues. Weight loss (60 lbs). Anxiety. Dizzy. Nausea. Et al.
Oct 2012 severe nausea. Headaches at base of skull. Nystagmus. Anxiety. Panic. Tingling in some extremities.
Jan 2013 I saw a top neurosurgeon and seeing my 6 year old MRI he said he wouldn’t want to do decompression surgery on me due to my profession, the odds of full recovery, and 3mm isn’t drastic enough.
He ordered another MRI.
Now I have 7mm herniation and considering I’ve been bed ridden for 2 months, he said I’m a candidate for surgery.
I am very discouraged at reading surgery outcomes. It seems its about a ratio of 10 to 1 in regards to complications versus success.
I have the top rated neurosurgeon in my large CA county so I trust him … I just don’t know what to do.
I’m battling depression and trying to find and pray for answers.
I have had zero relief of symptoms, save taking diazepam just to be able to get out of bed and do something.
The Neuro sent me to a psychiatrist who prescribed seroquil for anxiety depression… To see how much of my symptoms are emotionally related.
Just looking for some insight and support for someone who does not want to have surgery and regret it.
From my reading over 80% of patients will see some relief from surgery so there is some hope for you! :) I personally had surgery on October 15 and am doing much better than before. I am back at work, exercising again, and generally just feeling better than I have in years! I may have a few hiccups now and then but even on my worst day now I feel better than before surgery!
I personally know 2 people that had the surgery and say it was life changing.
The first suffered from extreme headaches to the point she could live life. Calling off work etc.... She has since married, had a child, works full time, and her headaches are minimal compared to before. She had a Chiari specialist do her surgery.
The second one had symptoms for 6 years -- balance, vision, swallowing issues, severe headaches all day, numbness and tingling. She said she was near suicidal but didn't due to her beliefs and the fact that she had 2 young sons. She had the surgery and claims the neurosurgeon saved her life. The only symptom she has left is tingling occasionally in her right arm. She also can't eat sugar or she gets a headache. She works full time and I see her exercising at the Y. Her neurosurgeon was a Chiari Specialist.
I read many posts that say "Don't do it, I'm way worse off". Most of those people don't say who did their surgery either. I think that makes a difference.
I guess I'm not the support you were looking for. I didn't offer any antisurgery support. I'm sorry.
For years I just “managed” my symptoms with meds (Ativan, Klonopin). When I take those meds I feel so much better … Which led me to believe my PCP telling me ALL of this was due to anxiety.
But when the symptoms all of a sudden came on double severity and I became bed ridden, I couldn’t help but think something else was wrong.
My brother (anesthetist) did a Chiari surgery on a patient and told me to research it.
After 11 years of feeling not myself with 1 year of that being in agony, I’m at a crossroads.
I have heavy anxiety…very bad and severe panic attacks.
There’s a part of me that would just rather honestly just deteriorate than go throw the surgery and recovery and then deal with possibility of complications that I’ve read so much about.
All of this surgery news is less than 24hrs old so I’m still gathering info.
My quality of life is non-existent and I know that the anxiety is exacerbating my symptoms.
My NS advised me to start the anti depressants to see if it makes the symptoms at least manageable.
Did both of you have a Chiari specialist do your surgery? When I go to see the neurosurgeon tomorrow I am going to ask if I would be better off getting the surgery now while I only have hearing issues and headaches or should I wait. It is a hard decision. One that should be prayed over. I do believe I will get a second opinion as I believe I have time. I do know if my quality of life was declining rapidly the choice would be easy for me.
Dallas,
I wish you the best with your decision. It is difficult.
Mine was done 3.5 years ago, with zero post surgical complications. I had total relief of symptoms for 3 years. (except the hearing loss, which I suspect is permanent damage) I am now having some symptoms, but not sure if it is related to Chiari or herniated discs, I see my NS on Feb 5. My surgeon is a top skull base surgery NS who has a lot of experience with Chiari patients, but wouldn't classify himself as a "chiari specialist".
I'm not sure I trust the idea that a "Chiari Specialist" really is a better choice than a good neurosurgeon with extensive experience with Chiari patients. I have just heard and read too much to put much stock in that term, at this point (but that is a whole other discussion and only my personal opinion)
Wonder, I am only speaking for myself, but if I were bedridden for 2 months and totally trusted my NS, I would be signing up for the surgery as soon as they would allow me to get it. That isn't any way to live. Then again, I would do anything to not just disintegrate. I am so sorry you have having such a rough time of it. I think I would start with doing whatever necessary to get the depression/anxiety under control before making any decisions. Going into major surgery in a really depressed and anxious state isn't a great recipe for success imo. (if you were to eventually make the choice of getting the surgery)
I would do the surgery again. (don't get me wrong, I don't want to because it's major surgery) The result was worth it, for me.
And remember, the people talking about it on the internet are often people who either have complications or bad results and still suffering, they don't represent the whole because there are thousands of people who had successful surgery, with NO complications, went on with their lives and don't feel the need to talk about it.
Whatever your decision, I wish you luck in your quest for relief!!!
Quality of life is important to everyone. I will be having my surgery next week. I have a bit of anxiety but after weighing all the options, I felt it was best for me. In my opinion, if I can get just a bit of my life back I would be greatful. I’ve been in pain for years and am ready for a new life. All surgeries are risky and all outcomes are different. Weigh all the risks and do what is best for you.
As I’m reading, I’m seeing how much a good positive attitude towards recovery helps in recovery.
As it stands now, I don’t think I’m mentally fit for such a taxing surgery. I’m not sure if its the years of anxiety or the months in bed but my outlook is not very good and don’t know I have the resolve to fight much.
When I was referring to a Chiari specialist I meant a neurosurgeon who has done many chiari surgeries. Not someone who just calls himself that. We can call ourselves whatever we want.
I spent 3 years with a schwannoma in my spine as they wanted to watch and wait. One night when I was sleeping I felt this odd pain just under my ribs and knew the schwannoma grew. I made an appointment with the neuro for an MRI and I was correct. I then had an appointment with a neurosurgeon. I picked a spine specialist -- he did not just call himself that either. When I went to him he couldn't believe that I did not have walking difficulty, bladder problems, etc.... due to the size of the schwannoma and how much it was pressing on my spine. I was somewhat nervous about the surgery. I realized that I could be paralyzed during surgery but I didn't have a choice. The tumor was going to paralyze me if left untreated. 6 weeks after surgery I ran a half marathon. I don't regret that decision at all.
I'm not sure if I'm ready to sign up for decompression of the brain yet. If I could be guaranteed to get my hearing back I would but I know that can not be guaranteed. I find the decreased hearing to be much worse than the visual impairment. I feel socially isolated at times b/c I just can't hear well. I dislike going to my daughter's basketball games. Anyone sitting to the right of me I just can't hear. I'm that person that smiles and nods her head!
Thanks for the clarification, i thought you were talking about the doctors at places that specialize in chiari only. I also would love a guarantee to get my hearing back, it sucks losing it!
We’re glad you’re here it’s a step in the right direction. I haven’t had surgery yet, I’ve spent the last year being poked and dealing with it and ruling out every other ailment known and not known to man to get to the other side so I can haven surgery. I think the time that has passed and damage that’s been done some is not repairable BUT any improvement and making me more the old me I’m doing it. It’s a personal choice take your time any improvement is better than nothing right? We are here with and for you :))
I have spent the last 9 yrs and tens of thousands of dollars trying to find out what the hell is wrong with me.
I had every diagnosis from mercury poisoning to candidiasis to anxiety to migraine vertigo to Ménière’s disease to mold toxicity to … To … To … To …
I’ve done everything from Paxil to hyperbaric chambers to IV drips to Accupuncture to psychotherapy to…
I’m exhausted.
I’m a believer in God and healing and consider my faith to be important to me … But my faith gets tested when anxiety and panic issues cause me to not take care of myself.
Even if surgery is my best option, I fear my anxiety will stop me from pursuing.
Any other believers in here? I’d love to exchange prayers for each other.
Melissa, I have moderate to severe hearing loss in both ears, my left is the worse ear though. I do not wear hearing aids because of the expense, my insurance doesn’t cover them.
Dallas/Wonder, I am also a believer. I will keep you in my prayers
Welcome to the world of Chiari! :( I have suffered from anxiety for a long time and now I'm wondering how much of it is related to possibly having Chiari. (I say that because two doctors say I have it 3mm, just found out today, and all the rest say I don't have it) I made the mistake of going off of Zoloft, I had massive panic attacks, which up to that point I had never had one before. I dropped 70 pounds in one year, nothing would stay in went to UW specialists and they pretty much said that if I didn't quit my job I would never get better, so in a nutshell I was slowing starving to death. Now I've ballooned back to my original weight and my anxiety is all over the place because of all the medications I take to deal with the pain. Unfortunately we can't tell you what to do, trust me I wish somebody could. Don't quote me on this but I thought that I read somewhere that there is about a 30% chance of improving, 30% staying the same, and 30% of getting worse. So far I have not come across anyone who has regretted having the surgery but of course I haven't met everyone. :) I live in Washington State and unfortunately although we have some of the best hospitals and Doctors they don't seem to recognize Chiari here. I met with my pain doc today and got the results of my CINE MRI even though all my MRI's say No Chiari Malformation, I have a 3mm malformation and a triangle shaped cerebellum. I don't know why everyone reads the MRI's differently? So far 2 Doctors say I have it and all others say I don't, which unfortunately seems to be the norm. I do have a friend that they actually said has Chiari. His surgery was very successful. Unfortunately somebody rear ended him and caused the tumor in his spine to rupture. Before that he was completely pain free so he is an unusual case. Also honestly I can't imagine anyway dealing with chronic pain that doesn't have depression and/or Anxiety. Plus they can manifest in physical ways that can make it hard to figure out what is "real" pain. Regardless of how it's caused, pain is pain. Your body is going to respond to it the same. My PCP has been awesome about that and it was nice to have someone recognize that for once. I'm in the same boat as you. Although my pain level isn't as bad as yours I don't feel surgery is the answer for me. The only thing that I can say is to continue doing what you are doing, get a second or third opinion. Exhaust all other avenues, I'm trying pain blockers. I can only give you suggestions, I wish I could give you concrete answers but to quote a friend "you know your body best and there is a reason why Doctor's call it a "practice". I know for me that as bad as I am I can not get worse so for now surgery isn't my best option but I will and do pray tons for what I should do. I hope that you are able to find the answers you are searching for and feel comfortable with the decision you make. Please keep us updated on how you are doing. We are always here to answer any question we can, and we are here to support whatever decision you make.
In 2009 when I went from being extremely healthy to a person with many problems overnight. I had extreme anxiety. My faith was tested over and over again. I realize that God is good even though he might not answer my prayers the way I think they should be answered. Look at Job in the bible... now he was a man of faith but still had many trials. The bible says we will have trials. I take comfort in knowing that Jesus understands. Prior to his crucifixtion he felt the trials of everyone he was dyiing for. His anxiety was so great he sweat blood. Below is a scripture from 1 Peter 1 that I had posted on my fridge during my time of high anxiety. I read it frequently.
1 Peter 1
6 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.7 These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.8 Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy,9 for you are receiving the end result of your faith, the salvation of your souls.
Each person's case is different but...my daughter (14) just had her decompression done on Nov. 20. She is getting better every day. Her NS does the procedure at Seattle Children's and UW Med. He says 85% of his patients who get it done show reduced or almost no symptoms eventually.
I know about mental health as well as dealing with medical problems, i am so frustrated that they keep putting me on more medication, I also take seroquel for anxiety as well as sleep, on a dosage above the max, I take 900mg a day, plus on ambien cr, ativan, prozac, lamictal, indomethacin, oxycodone, zofran, and now my NL says she wants to put me on even more medication, I am SOOO DONE with meds, I hope they can help you better than they have helped me
@Robinlm…I agree and understand exactly what you. Depression has been a part of my life since forever and this illness has not made it any better. Doctors have continually tried to medicate me for depression as well as things they thought were my problem. I sat and watched doctors pile medications on my mother who passed of a heart attack at 42 and I refuse to allow this to happen to me.
@wonder, I am a firm believer in the Lord and I have learned to accept what has been laid in my path. I realize that we go through trials for reasons unknown to us and we should not question His plan. Continue to pray. Whatever your decision we are here.
