When I was diagnosed with a rare brain disorder at the age of thirty-five, I was shocked. What was more shocking was that I was a mother of two small boys and I had just been told that I would need brain surgery.
The symptoms came on so sudden that I wasn't even sure there was anything physically wrong with me. I thought that I was stressed out, I was overly tired, and I needed a good rest. When the symptoms did not get better; but instead, got worse over time, I knew I had to see a doctor. I was having aching at the back of my head, and I would wake several times in the night to find my head completely numb as it laid on the pillow. I would physically have to lift my head off the pillow to allow the feeling to rush back in. I also began getting confused and disoriented. When I walked in my local grocery store I'd shopped in many times and couldn't find the dairy section, I knew I was much more than just tired.
After visiting a neurologist, he decided an MRI was in order. The MRI revealed a very large posterior fossa arachnoid cyst. This is a cyst, or a fluid-filled sac that sits on the back of the brain. Mine was compressing my brain stem and cerebellum; both of which are vital to life.
I was referred to a neurosurgeon who decided that with my symptoms, the best form of treatment would be do a fenestration of the cyst. This is a procedure that requires the doctor to use a wand and go inside the cyst to disengage the walls that had built up inside the cyst. These walls had grown over the years; allowing fluid to get inside the cyst, but not back out.
The surgery worked, but only for three months. I had quite a bit of relief from the pressure until gradually it built back up. With my condition, the only other option was to put a shunt in. A shunt helps keep the fluid draining. It siphons the fluid out, keeping it from building up inside.
I have had the shunt for almost four years now. One concern with shunts is that it can over drain. This brings on a set of problems of its own; such as brain sagging, and a Chiari Malformation - a condition that causes the brain to herniate into the spine. I now have both problems. My shunt over drained for several months leaving me with a space between my skull and the dura matter. My brain stem also sunk into the spinal column giving me a whole new array of symptoms.
I live day-to-day with brain trauma and many symptoms that go along with it. There is a surgery to help correct the Chiari, but getting up the nerve to go through yet another brain surgery is where I am today.
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I was diagnosed with a Posterior Fossa Arachnoid Cyst in early August after 2 years of being misdiagnosed with numerous times with everything from anxiety to GERD. I would have "episodes" of arm numbness, dizziness, vertgo, nausea and blackouts. I went to ER once after blacking out while driving with my two toddlers and they discharged me saying I was under stress. So FINALLY getting a diagnosis relieved me to a point. I met with a neurosurgeon that said he would put a shunt to relieve some of the pressur, no questions asked.I was relieved to hear that he believed that my symptoms were related to the cyst. I was desperate, my symtpoms were getting worse and were almost constant, I was so scared. I cancelled my second opinion and scheduled surgery. Less than 3 weeks after my diagnosis, I was having surgery. I became sick after the surgery and was violently vomiting and dislodged my first shunt, 2 days later I went in for another one. Since then I have been battling low pressure headaches, still have nausea and am extremely weak. It has been 6 weeks since my surgery. The size of the cyst has went down a little, but some of my symptoms remain, I battle from constant nausea despite medications and continue to lose weight (30lbs). My surgeon said the size may not go down any further, but the pressure will change. I feel as if I did not educate myself well enough before surgery and was not sure what to expect. I was suppose to go back to work next week. I am lucky to be able to ride in a car and the other day was the first time I walked into a store in 8 weeks. I couldn't handle it. I am discouraged because I can't care for my two little girls, drive or work at this point. My husband and family are very supportive though. I feel like I will never get better or function even close to what I used to. My surgeon and I are giving it a few more weeks and then beig referred to Mayo in Rochester. Has anyone heard of good things from there? I do have all of my records and am also prepared to send them to Barrow's or Skull Base Institute as well. Although they are very far away. I am not sure if they can do anything more for me. This site has been my sanity over the past 2 months. It comforting to hear other people in a somewhat similar situation. I just thought I would be further along in 6 weeks. Maybe I am expecting too much????
October 9, 2011 - 6:34pmThis Comment
Thank you. That was very nice to say. I hope He does. I am looking forward to some "nice showers!" : ) It would be a nice change from what felt like a lot of showers of "not so good" things.
Maria
August 19, 2011 - 6:27pmThis Comment
I whole heartedly feel disappointed of your situation as a mom of 2 kids, Even then i highly appreciate your attitude and the way you took things up. This will surely put some courage in anyone who has the same health issue after reading your story. Hats off !. Let God shower his grace on you and your family for the fullest.
August 19, 2011 - 6:08pm- Riyadh (I N DI A)
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Hi Ladies,
It has been so comforting having found not only this website, but also this page in particular. My 3 month old son was just diagnosed with a 5.4 cm x 7.8 cm x 10 cm cyst on his cerebellum. At birth, there were no issues..he is my third baby and only boy and he weighed 9 lbs 2 oz and was 20 1/2 inches long. He nurses like a champ and is the light of my life. At his 2 month check-up, the pediatrician measured his head and found that it had grown 2 inches since birth..as you know, infant head circumference is measured in centimeters, the growth alone was in inches!! The doctor ordered a skull x-ray thinking perhaps the bones in his head had fused together prematurely. The Skull x-rays came back negative meaning all looked well! We went back on the day he turned 3 months old for a follow up appt. (Oct. 12, 2010). Christian's head grew 2 cm in a month (from 43 cm to 45 cm) so the Dr. ordered an ultrasound as his fontanel is still open and he didn't want to give him the CT and expose him to radiation. We had the u/s done the next day (last Wednesday 10.13.10) and got a phone call a few hours later that they had found a cyst and he needs to go to Children's Hospital of Philadelphia (CHOP) for an MRI with and without contrast and which required him to be sedated. We called the next day to schedule and his appt. was made for that Friday (10.15.10) evening at CHOP. We got the phone call at 11 pm that Friday (just a few days ago) that it is an arachnoid cyst that measures 5.4 cm x 7.8 cm x 10 cm and is on his cerebellum. The MRI showed that there is intercranial pressure, it's blocking cerebralspinal fluid, there's hydrocephaly and it's growing. Christian's only symptoms were the macrocephaly and I noticed that at about 7 weeks old to present day, he would scream anytime he was in his carseat or laid down flat on his head ( he sleeps on his side or belly which I know is not the trend b/c of SIDS) and my husband noticed that sometimes he just stares off and doesn't blink but you can normally snap him out of it. Otherwise, he coos, smiles, laughs, follows you with his eyes, turns his head to look for you, rolls over from belly to back and back to belly, and has found his fingers (he loves to suck his thumb). His neurosurgeons are Dr. Storm and Dr. Sutton and we meet with them this Wednesday (10.20.10). After reading about so many complications people have with shunts and the fact that he is so little just scares me to death. I'm so scared my son will never have a normal life, his brain over drain and develop into the chiari syndrome, or even die from complications! I have yet to read a story about someone with this brain condition have a positive ending-meaning there are no complications and after the procedure, their life just goes on as normal. i also haven't read any stories about babies as young as my son having this brain surgery (they are thinking shunt and fenestration). I am just so scared of the unknown and want to make the best decision for him as he can't tell us what he feels. I hear from so many sources though that this is so common and not a big deal but it doesn't sound that way after hearing the stories from patients!
Thank you so much for sharing your stories and I'd love to hear your feedback!!!
Thanks,
October 18, 2010 - 8:59amMaria- Christian's mommy
This Comment
Thank you Maria for being here. I'm sure this is a heart-wrenching journey for you. It sounds like you found a great team of doctors to care for your son. It may also help to connect with others experiencing the same condition: Arachnoid Cyst Support Group
October 18, 2010 - 1:10pmGood luck, and please keep us posted on little Christian's condition. I will be thinking of him and sending good vibes. I'm sure everyone who reads your post will too.
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Hi James Wife - It's sad to hear that you feel so frustrated. The situation you're in has to be frightening and upsetting.
Your anxiety may come across on the telephone and the people that you are talking to may simply be trying to be kind and to reassure you. The dictionary says that incidental means something is of a minor, casual or subordinate nature. Many arachnoid cysts cause no problems at all.
When a staff person on the other end of the phone says something they are speaking from their world, not the doctor's. In a busy medical practice there are many stressors on the staff, and it helps make their world calmer by dealing with patients and caregivers in a reassuring manner.
I hope you can find a way to keep your spirits up, remain persistent and not be discouraged by what is most likely going to be a long process to find the right doctor and treatment for your husband. As Maria and others will tell you this is going to be an extensive process, and support from others who've been through the same thing is going to help you make it through the journey and around the roadblocks. We wish you the best in doing so.
June 24, 2010 - 5:30pmThis Comment
Thanks so much for the advice, the very first Dr. I attempted to make an appointment with, first thing I was told was quote "most are INCIDENTAL", this was over the phone, so frustrating, I feel lost not knowing what to do, but advice, friends, and of course sites like these help to make informative decisions...when I am told by phone, before examing my husband or looking/reading not one report that it is probably incidental, I don't have alot of faith in him...that was in Louisville, Ky., what the heck is INCIDENTAL anyways..I can see already what I am going to be up against. ROADBLOCKS! AGAIN THANKS!
June 24, 2010 - 4:03pmThis Comment
Hi Again
Pat is so right, but I wanted to add that in medicine it is common to say something is an incidental finding. What that usually means is that they were looking for one thing, and the test showed something else that may not be a huge deal. I'm not saying what is going on with your husband is unimportant, I'm just explaining what the wording may mean. Part of the problem with doctors and patients is they don't speak the same language.
An example of an incidental finding would be if you had a problem with your intestines, so you had a CT done which showed a cyst on your kidney. Kidney cysts are extremely common and often just something that is there, but not necessarily something that needs treatment. So you would have your intestinal issue diagnosed, and the kidney cyst would be an incidental finding and probably not need treatment.
I'm not sure if that is what the doctor meant when you spoke to him, but that is a very common phrase used in medicine. I hope that makes sense to you. Again, good luck to you and your husband.
June 24, 2010 - 8:19pmThis Comment
Hi James' wife as well,
I have to say that I am very sorry your husband is going through this and you as well. I know the spouse has a lot to deal with too and can a lot of times feel so helpless. I agree with what Ms. Cook said; those are wise words to check with large hospitals with big neurological departments. In my experience, sometimes teaching hospitals are a good place to either start or seek out treatment. They can be eager to tackle rare cases and will dedicate themselves to finding answers. That is my opinion and experience with dealing with the medical profession not only as a patient, but working in the medical field in the past as well. And having a physician as a father who also recommended teaching hospitals.
Keep your chin up....your husband will need you. It sounds like you have a good basis and makings for a very supportive role in your relationship. That will go a long way with a situation like this.
Good luck and keep us updated.
June 23, 2010 - 3:13pmMaria
This Comment
My husband was just told by mri he has an arachnoid cyst right cerebal pontine angle, he has had sytoms for many months, blowing them off since he is an underground miner for over 20 years and works very hard daily, as being tired/exhausted and stressed, he had an accident in nov. 09, where he was hit in the back of the head and neck hard enough that it knocked him completely out, went back to work after 3 days, and about jan. or feb. this year he started having alot of neck pain, Dr. sent him for an mri of the neck, in which showed alot of damage in the neck, but also showed a small part of the brain which came back as abnormal. I have told him it was a blessing that his neck started hurting, because we may have not found the arachnoid cyst. They sent him for an mri w/wout contrast brain scan, which resulted in the arachnoid cyst. I screamed and cried for several hours yesterday, now today, I feel I have to be together and active in his treatment, feeling frustrated that there are so very few Drs. that specialize in this and of course none around us. we live in Kentucky. Not to mention having to make sure that our insurance will be accepted, we have anthem blue cross, Any advice or help, guidance with Doctors would be so appreciated, and by the way and had already visited the awareness site before I found this forum, and it is helpful....thanks for that site. I am scared, confused and trying to be strong for the love of my life, we have been married 22 years, childhood friends most of our life, we have 4 kids and 2 grandbabys...someone please help us! Thanks Rhonda
June 23, 2010 - 10:11amThis Comment