Newly diagnosed, need help

[isabel0608]

Hi everyone.
My name is Isabel and I was diagnosed 2 weeks ago with tonsils at 11 and 14 mm respectively. I am 42 and have had symptoms all my life, as a little girl I had severe leg pain, especially if I did any sports. I always felt fatigued and low energy compared to my friends. Things got worse 21 years ago after having my first child. Fatigue increased and pain became constant. I was dx with fibromyalgia about 18 years ago and since then have been taking an assortment of meds to manage it with ups and downs over time of course. My neck pain has been much worse over the past couple of years and have gotten some relief through Chiropractic, which I was told i can no longer do. I have sleep apnea, which is severe and was hoping the headaches would lessen after getting on CPAP but it has not been the case. about 8 years ago I was significantly worse with the body aches and fatigue and went to a Lyme doctor. The Lyme tests were negative so the doctor ordered an MRI of the brain and told me I had lesions that were consistent with Lyme affecting my brain. I was on a course of antibiotics and anti virals for about 6 months and then I lost a lot of weight and felt even better. Things then have been getting worse over time, so we thought it was the sleep apnea and things did not get better after cpap. Over the last month my blood pressure rose, when it had always been great and I started getting vertigo, and then numbness in the extremities, which has brought me to the ER several times, so I asked my primary care doctor to order a brain MRI because I remembered the issues with the Lesions and thought that may have something to do with it. After the MRI is when I was diagnosed with chiari, so I have been doing research of course. I live in RI and the closest Chiari clinic is in Long island, NY, about a 3 hour drive. I have dropped off my application for an appointment, which they review every Thursday. I also traveled to the Dominican Republic for other reasons and made an appointment at the advanced neuro and spine institute, which also has offices in Miami. Dr. Santiago figereo has raving reviews and I got so much attention at the appointment, I'm wondering if it might be worthy going to Miami for surgery. They even addressed a different concern that had nothing to do with chiari and ordered a battery of tests. They want me to have a full spine MRI and I'm trying to coordinate with my PC, who is not knowledgeable about chiari.
So, I have several questions for you guys:
1)  How do I go about making sure I get all the necessary tests, including those that would determine other related conditions like EDS, can you list all the tests?
2: What is the expected recuperation time after surgery, when will I be able to resume normal activities?
Has anyone had experience with the Long Island chiari clinic and would you recommend it, why or why not?
3) I have seen people mention a list of doctors here, where do I find it, I'd like to see if there are other options closer to me in the Providence or Boston area?
4) I have read about duraplasty and tissue harvesting, when do you have one over the other?
5) Any data on symptom resolution after surgery, what percentage of people get complete symptom relief?
6) What else should I know or be prepared for?
Thanks in advance for all your help. My neck pain is at times unbearable and I am so looking forward to the possibility of relief.

Thanks,

Isabel

[selmaS]

  Good Luck

[isabel0608]

Thanks again.

I decided to establish with a local neurosurgeon, at least to coordinate care locally. http://www.healthgrades.com/physician/dr-deus-cielo-xgxg9/background-check#BackgroundCarePhilosophy_anchor

Then I will decide weather to go to NY or FL

[selmaS]

  I am not sure about the Drs..as I said the list is compiled by  members they have been to, treated by and liked, you will have to research the Dr...call the office and ask questions...the only name in MA I am aware of is the last on the list Heilman....

I said the same thing...I did not feel I was hypermobile either....but that can be bcuz our muscles get tight as a result of trying to hold us together....I only knew I had slow healing and that I would bruise easily....but nothing more...so let a Dr check you for this and do not go by what you feel...as I would have been wrong about myself....

You may want to see a few Drs....if NY is close go there and see Dr Heilman....and maybe one more....the Dr should not only be well experienced and informed but you should feel comfortable and like them too in order for this to work well for you.

[isabel0608]

Thank you. You did clarify my question on tissue harvesting. Are those doctors on MA for consulting or are they surgeons as well?
I have been trying to find more info on EDS but what I do read does not match my symptoms accurately. I do not have hyperextension/mobility, on the contrary and I don't have any skin issues or issues with scars or healing or bleeding.  I do bruise relatively easy, but I would not say excesively bc I am clumsy and I'm bumping into things often.
My symptoms are pain in the muscles and some joints, fatigue, severe neck pain, headaches, scoliosis, back pain, hip pain, intolerance to gluten, skin sensitivity, excessive sweat, I've always had excessive fat percentage for my weight, low muscle tone and difficulty losing weight and gaining muscle, life time of constipation despite eating lots of fiber, discomfort/sensitivity in pelvis area, had low libido for 15 years but that has significantly changed in the last 3 to 5 years,high sensitivity to pain, if I get poked it hurts, excessive sense of smell, I smell things other ppl can't, last 6 months or so I have started with stomach issues like getting naseous after eating, sleep apnea, leg pain growing up. I'm trying to think of everything I can and see if you guys point me in the right direction.

[selmaS]

  Hi and welcome to the Chiari forum.

I went to TCI in NY....and the Drs there did the testing for related conditions like EDS>..ect....a well informed Dr will or should.I was very happy with my Dr and if needed I would go again.

And just a FYI your fibro may be EDS and not fibro...I also was DX'd with Fibro then found out it is EDS>...sigh...it can get confusing.

We are all different, and there is no way to follow a general timeline for recovery. It can be a slow process and slower if you have EDS.

The Drs list is in my journal pages since the Health Pages were discontinued.....also, keep in mind our list was compiled by the members here of Drs they have been to, treated by and liked....you have to research all the Drs as the list is not meant to be a referral nor an endorsement for those listed on it.

MASSACHUSETTS

Dr William Butler
Mass General Hospital
Boston, MA

Jean-Valery Coumans, MD
Mass General Hospital
15 Parkman St.
Boston, MA 02114
Tel: [phone]
Fax: [phone]

Dr. Carl Heilman NS
Tufts Medical Center
Boston, MA

AS far as tissue harvesting over dura plasty...I think you are confused...a dura plasty is a patch used to close the dura after it is opened...the type of patch used is up to the Dr which one is best for the patient...if the person has EDS, harvesting tissue for the patch is a better option as we are less likely to reject our own tissue then those of one made of synthetic material or bovine or cadaver patches.....since I have EDS I had tissue from my scalp harvested .....and I had no issues with my patch.

I do not think there is such data out there....and since we all heal at different rates I think it may be hard to track something like that.....I had surgery in May of '09...and I continue to see benefits....did I see them immediately after surgery..yes..but that was due to meds....and the huge changes from surgery....but they slowly creep back....and then slowly disappear....I am not aware of anyone that has had ALL symptoms go away....our activities can affect how we feel as can having the related conditions... this is why it is best to know b4 surgery so precautions can be taken to minimize ill effects....

It is hard to be prepared...we have to be open to anything the Drs may tell us...and be able to know which course of action is best for us....