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Thoughts anyone??? New to this discussion board but not CSN

CLRRN's picture
Posts: 127
Joined: Jun 2010

Hi Everyone,

I've been on CSN:head/neck cancer for my partner. I was his caregiver for Stage 4 Tonsil Cancer. I'm happy to say his 13mo PET scan on Thurs 14Jul was clean.

As if the past year wasn't enough, I noticed that I was feeling a "weird" sensation when I swallowed, ear fullness, occasional sore throat and sometimes felt like I was choking on food. To date my thyroid labs are normal however the thyroid ultrasound showed a 3.2 cm nodule on the left and multiple nodules on the right (6mm, 5mm and 1mm). I had an FNA and here are the results:

"The specimen is moderately cellular and could represent a cellular adenomatoid nodule but the presence of microfollicle formation, monolayered sheets of equal sized cohesive cells, scant colloid and occasional dense round 'colloid bodies' raise the possibility of a neoplasm. Excision of the lesion for definitive diagnosis is recommended as clinically indicated"

I met with the ENT whose practice specializes in Thyroid and I'm moving forward to have a partial thryroidectomy with the understanding if the final path comes back malignant, I will need to go back and have a TT.

Just wanted to see if any of you in this group had (or has) a similar experience and would like to share or if you have an opinion, I would love to hear!!


Posts: 582
Joined: Oct 2010

Hi Chris,

I didn't have a similar experience but wanted to write to tell you that I will be praying for you. Many in this group have had half removed and gone back for a TT. It sounds like you have some large nodes that are causing you a lot of discomfort. If this is cancer and you need a TT keep in mind that this may be just the beginning of your fight or it could be the end. It will take some time to adjust to replacement Thyroid meds. It can be difficult at first.

All of my labs were normal until the day I had my TT. I have had three surgeries and two Radioactive Iodine treatments. I had metastasis to the lymph nodes six months after my TT and then I found out that the ENT missed the main nodes that were biopsied for removal. Back to surgery another six months later. I found my own node originally and it was very small. I had symptoms for at least nine months before I was able to find the node. Then I had to convince my PCP that something was very wrong. It wasn't easy because of my "normal" lab results. I am positive for the B-RAF mutation gene. So, even though I caught my cancer at stage 1, I still had metastasis and have to be watched carefully for the rest of my life. I would ask your surgeon about testing your tissue after surgery for this mutation gene if it does come out malignant. If you are positive you will know that you will need to be more aggressive with treatments.

I wish you the best and please keep us informed of your progress.


CLRRN's picture
Posts: 127
Joined: Jun 2010

Thanks for taking the time to reply. I appreciate all your kind words and advice. I've seen a lot about B-RAF and I will definitely follow up to ensure that test is performed.

I'm not a patient person and this journey has been challenging for me.

Thank you again and I will definitely post more once I have updates.


Posts: 47
Joined: Jun 2011

Continued good news for your partner!

I have been hypo for about 3 years, but that aside, I don't have a lot of faith in the TSH test when it comes to thyroid function. However, I'm about where you are otherwise. I started having some hoarseness that I blamed on allergies. I was taking a full 15 hours at a technical college, so I was in class 30 hours a week as well as being mom and wife. Then my family started commenting on my voice. It was time for my check-up, so to the dr. I went. My TSH was within normal range, but I asked my dr. to do a free T3 and Free T4 test. Those were off. Also, I had a rather large "lump" in my throat. By this time my throat was beginning to have discomfort at the end of the day--especially if I talked a lot. I was put on Cytomel and checked in a month to see if the lump became smaller. It didn't. Ultrasound was done and they found only one nodule that measured near 3 cm by 2 cm by 1.5 cm. It has ventricular (blood) flow and it's not a pretty dark "hole" on the US. I also have some nodules that are fixated and hard. I am gong to MD Anderson on July 20th and 21st to find out if it is cancer or not. The odds say it is, but I would loved to be proven wrong. LOL

One thing you could look into, is to see if you have a center that will do the biopsy on the first half of the thyroid while you are under. Granted, these apparently are rather rare, but it would be nice not to have to go back in for a second surgery if needed.

Wishing you all the best. Keep us posted.

Posts: 507
Joined: Apr 2010

On the thyroid labs that came back "NORMAL"
What did they test

I am guessing they did a T4+TSH test.
TSH = thyrotropin - this is an indicator about how much your body is asking your thyroid to make thyroid hormones
T4= thyroxine Free - this is a measure of the amount of unbound T4 in your system and what the doctors normally like to use to tell if your hypo, normal, or hyper with relation to thyroid.

they normally do not test for T3
fT3 = Triiodothyronine free - this is a measure of your active thyroid hormone what gives you your energy and some of the t3 is produced by the thyroid but the rest comes from conversion of T4 to T3 in the body.


Ok very brief on my story
2009 Nov I knew I was losing energy gaining weight but no idea why
2009 Dec ENT doctor noticed a "lump" and ordered ultrasound to check it out it was a thyroid goiter at 7.1cm in size (blood test for T4 and TSH normal)
2010 Jan they did a FNA and it came back inconclusive but suspicious. There plan was the wait and see approach but since i was havening breathing and swallowing issues they decided to remove the goiter and 1/2 the thyroid (blood test for T4 and TSH normal)

2010 Feb removed right side of thyroid and goiter told me it looked non cancerous (blood test for T4 and TSH normal)

2010 Mar on my 2 week follow-up I was told the report came back and i had follicular and papalarry cancer on the thyroid tissue they removed and ordered the TT.
2010 may Radioactive Iodine treatment
2011 may 1 year out clean scan.

IF they find out its cancerous MAKE SURE they test for "B-RAF" mutation.

From your report I do see one thing I would be concerned about that is the fact that both sided of your thyroid have nodes. From the sound of it they are planning on taking out the left side and the 3.2cm goiter but just go a visual look at the right side.

the reason I am concerned is the 7.1 cm section of my thyroid came back with follicular cancer and I had multiple 1-8 mm areas of papillary cancer. the cancers were in different areas of the thyroid

another thing you may find out is your airway may be shifted do to the size of the node(goiter) it was in my case so the anesthesiologist had to do an "awake intubation" they say you don’t remember anything but i did it was not fun

oh did they do the FNA on the 3.2cm area on the left or the right (6mm, 5mm and 1mm). to me it sounds like they did the 3.2cm area

also make sure they have consent to take the entire thyroid and anything else needed if when they open you up they can visibly see cancer.

I really hope I didn’t scare you with any of that


CLRRN's picture
Posts: 127
Joined: Jun 2010

Hey Craig,

Thanks for sharing your story and information. It's amazing how many people have experienced the same thing or have taken the same journey. I've heard several stories about both follicular and papillary cancer in the thyroid.

To add a little to my history, I'm a nurse and worked on a oncology unit for years taking care of patients received chemo and RAI. Although we were limited to the # times we entered the patients room after receiving I-131, we still went in there. Last year, one of my good friends that worked on the unit with me was diagnosed w/Thyroid cancer (papillary) and her doc asked if she ever wore a "thyroid shield" when she went into the patients room-nope, only a pelvic shield. If you aren't aware, these shields the techs wear when you get a scan/xray and they are made of lead. Interesting we both worked on the unit taking care of these patients. Little ironic for me considering where I am today.

Here are my labs:
Free T4 1.1 (0.8-1.9)
TSH 0.992 (0.400-4.00)
You are correct, no T3 but did do the following as well
Thyroid Peroxidase (TPO) <6 ((0-34)
Antithyroidglobulin Ab <20 (0-40)

ANA Direct Negative
My WBC was low at 3.1 (4.5-11) and lymphocytes 53.7 (14-40) not sure about those and the PCP relates them to viral.

Yes-the FNA was on the 3.2 cm nodule on the left.

My plan to to get into to see an ENDO before the surgery. I really would prefer a TT and be done with it. I'm not a good patient and not very patient LOL. Maybe this is another test in this thing called life.

No worries and you didn't scare me. After my last year w/Mike and stage 4 tonsil cancer, I'm good. My nursing background also helps and i'm not afraid to ask for things including to ensure the TT is on the informed consent. I will definitely request the B-RAF gene mutation analysis. Definitely interesting.

Thank you again for sharing and your incite. I look forward to hearing your thoughts on the new information provided.

Happy Tuesday,

Posts: 507
Joined: Apr 2010

Hum never saw any of the nurses who came in to check on me wearing a thyroid shield either... just the 2mr/hour line and some of them were not worried about crossing it.

A little of my background I am retiring from the navy after 20 years working with nuclear power.

Hum labs.. Pulls out my copy of my labs

Looks like your fT4 is right in range
Your TSH is normal
But as you probably realize now these two do not mean everything is fine.

Thyroid Peroxidase (TPO) <6 ((0-34) ok had to look it up it shows up on my tests as thyroglobulin
Antithyroidglobulin Ab <20 (0-40) (this shows up as thyroglobulin Ab <20 means that the thyroglobulin number is not affected

ANA Direct Negative (you do not have lupus)

The reason the normally like to do it in 2 surgeries unless they defiantly find visible cancer is that it is a lot easier on your body especially vocal cords and parathyroid’s

I have no medical background to help me I have learned everything I know in the past1 year 7 months.

Also if I had thought of it once I got released from RAI treatment I would have wore a lead or at least steel shield around my neck and shoulders to minimize the exposure to others.

Please ask as many questions and give us any good questions/answers your doctor's give you cause that one way we all learn more about this.

and resist the urge to strangle people for saying "at least it’s a good cancer" sorry I’m on a rant about that a nurse told me that yesterday when setting up for some of my appointments, I responded with well if it’s a good cancer I know where they have my frozen tissue sample if you want a transplant.

For some reason doctors and nurses seem to think saying things like that are comforting. I would prefer
Ok here is what you got
Here is the plan
Ok you have had your TT and RAI you are a survivor
Clean scan

1 year, 4 months, 11 days since TT
1 year, 2 months, 15 days since RAI
2 months, 7 days since I was told I had a clean scan.

CLRRN's picture
Posts: 127
Joined: Jun 2010

Hey Craig,

Thanks for all the helpful information. I'm still struggling with the idea of two surgeries despite know the rationale. I do know they plan to use some kind of monitoring during surgery to help identify nerves during surgery.

I've stopped sharing with people because of that response "but it's a good cancer" Hmmmm yeah, well you can have it if you want. So surgery is scheduled for the 16th of Aug. At least I can move forward from there and for that I'm grateful.

I will definitely keep in touch!!

Posts: 507
Joined: Apr 2010

find a cancer support group.

they will defiantly tell you NO type of cancer is a good one.

remember you are in charge of your health. If you think 1 surgery is in YOUR best interest insist they do it in 1 surgery. They will come up with a lot of rational reasons not to do it in 1 or agree to do it. From that discussion you will either decide to do it in 2 surgeries or decide you want a different doctor.

The problem is people have come to the conclusion that if it isn't the worst thing then it's good.
48,020 are expected to be diagnosed with thyroid cancer in 2011
1,740 are expected to die BECAUSE of thyroid cancer in 2011

the biggest problem we have with support is the fact we are a "SMALL" cancer group compared to others.

Breast cancer is got the most publicity behind it and honestly in my opinion because of that everyone is assuming the others are not as bad.
232,620 expected new cases breast cancer 2011
39,970 expected to die from breast cancer 2011

the other BIG cancer one is any of the lung type and again people believe that "well that's cause of smokers"

as for all cancers
1,596,670 expected new cases of cancer of all types in 2011
571,950 expected deaths from all types of cancer in 2011

breast cancer is 5 times more common than thyroid cancer and only 1 out of 33 people with new cancer will be told its thyroid cancer.

with thyroid cancer there is a 97% 5 year survival rate. That is the figure the doctors use for determining its a GOOD cancer is a 97% survivability after 5 years.

Most normal people out there are not educated on thyroid cancer. Most doctors believe thyroid cancer is easy. about 80% of thyroid cancer patients do not have re-occurrences of thyroid cancer.

The people I blame are the news media. you get days worth of news for a plane crash, you hear about breast cancer month you have the Susan Colman pushing breast cancer.

I am not trying to minimize any other cancer there is NO good cancer out there.

the only reason I get angry about breast cancer is because of the cancer walks and exclusionary of other cancers. There have been 3 that I know of local cancer walks since I recovered enough from thyroid cancer local to me but each one I called said I would not be able to participate in the "survivor lap" Because they were not focused on thyroid cancer or they did not want to pull the attention off of breast cancer. I have honestly stopped looking for cancer walks in the community because of this.

remember 3% of thyroid cancer patients DIE from thyroid cancer or related issues withing 5 years.

That dose not account for ANY other form of death except related to the thyroid cancer.

CLRRN's picture
Posts: 127
Joined: Jun 2010

Thought I would give an update....I had a partial thyroidectomy on 8/16 because of a nodule on the left lobe. As you can see from above, the FNA had one concerning statement regarding a neoplasm. After getting two opinions, I agreed to the PT (standard of care). Well guess what??? They results were a little shocking to all (except for me-had a gut feeling).

Diagnosis: minimally invasive follicular carcinoma with oxyphilic (hurthle cell) metaplasia
Margins: clean/uninvolved
Tumor Capsule: present
Tumor capsule invasion: minimally
Lymph-vascular invasion: not present
Extrthyroidal extension: not present.

Because of the above results,I'm going back for surgery # 2 on 8/23 for the removal of the rest of my thyroid. I feel good post op, minimal pain that is controlled w/tylenol and other than a little sore, it all went well. I can only hope part 2 will be like this. I had a great anesthesiologist who kept me from getting sick.

I'm interested in hearing feedback, comments and welcome you to share your experiences. I sort of have a idea of what lies ahead but would like to hear from you.



Posts: 25
Joined: Dec 2010

I know this gut feeling....if you like, read my CSN page for my case details. (short version):I had a 4.5 cm Hurthle Cell Carcinoma removed in Dec 2010, and then my second surgery for TT completion found 1.1 cm Papillary Carcinoma Tall Cell Variant in Jan 2011. Both had already spread either through vascular invasion or lymph nodes and soft tissues. Still undergoing treatment, been a LONG road so far. If I can answer any questions feel free to message me. Best of luck in your journey!

Posts: 507
Joined: Apr 2010

Sorry to hear that it was cancer. From the report though it looks like they think they caught it in time though.

Be sure to watch the reports to see if they took out any of your parathyroid’s... you have 4 you supposedly only need 1. Each of my Thyroidectomy surgeries they took 1 so I’m down to 2 of 4 and this has caused some low calcium and other low mineral issues.

Good luck with surgery #2.

Chat with your doc about BRAF mutation it’s something they will have to do with labs of the thyroid tissue.

Also I know you won’t know till the pathology comes back on the rest of your thyroid but you need to start thinking now if you are planning on Radioactive Iodine Therapy (RAI) or not.

If the docs say your jumping the gun on stuff … tell them no your trying to catch up and plan the rest of your life and want to get all the details sorted out so you can get this all behind you.

You also should start looking into the Low Iodine Diet (LID) when they do your whole body scan in a few months you will need to go on this for 2 weeks or so but it helps to plan ahead prior to going super hypo as they get you ready for the scan. (you probably have 6-8 weeks). If they offer Thyrogen shots TELL THEM YES YOU WANT TO GO THAT WAY. They are in short supply but are defiantly the way to go through the whole body scan.

Be sure to tell your friends
Oh and if you get someone saying “good cancer” my current response is
“how can something that has a 3% mortality rate in 5 years and requires you to do a daily thyroid hormone replacement for the rest of your life and lots of blood tests plus scans for reoccurrence be that good”
Can’t wait to hear from you post op


CLRRN's picture
Posts: 127
Joined: Jun 2010

Hey Craig,
Thanks for all the information and reminders. I totally forgot to ask about the BRAF mutation but will do so tomorrow. The doctor said they were able to isolate the parathyroid glads but there is mention of "no histologic abnormality" on the final diagnosis of the path report but removal of the parathyroid is not mentioned in the specimen description. Oh well...if they took one, I have 3 left. Yeah??? LOL

I spoke to the ENDO today and she is starting me on Cytomel after surgery. There is still a shortage of Thyrogen. I confirmed this by finding a press release from Genzyme mid-July. The shortage is going to continue through the end of the year and into 2012. There are 3 lots being released but I'm not getting it. LOL The ENDO says she has people from April waiting for the medication. So it looks like I will be on Cyotmel until RAI-yes,I've opted to go with RAI. The tumor size was 2.4 cm and i'm grabbing all available "life lines".

I've already hear the "good cancer" comments and I just take with a grain of salt (non-iodized of course-haha). People are uncomfortable w/the "C" word. Although I had a partial, I feel like i'm in a "fog" or "haze" and can only contribute it to being somewhat hypo as I felt great post op.

Surgery is at 4pm tomorrow and I will be home sometime on Wed. I will be sure to provide an update. Good times....


Posts: 507
Joined: Apr 2010

glad things are going well
yes you are probably in a fog or haze... and it will get worse after they take the cytomel away

a trick with takeing cytomel they will probably give it to you in a 25mcg round pill and tell you to take it once a day. take a pill cutter (about $5) and cut the pill in half and then cut one of the halfs again in half.

in the morning you wake up take the 50% piece you made... around lunch time take a 25% piece... once you get off work take the last 25% piece. May sound like a pain but it will get you up and going in the moring, give you that afternoon burst of enegry you need and then give you something to have an evening with faimly and friends and still be able to get a good night sleep.

once they put you on cytomel you will also still be a bit hypo cause they are trying to get your body to drain all the thyroid hormones it has stored up before RAI.

again since you are planing on RAI start reading up on LID and planing your meals for when they take the cytomel away from you. I found cook and freeze in simple microwave containers worked the best i could pull one out give it its microwave Radiation exposure to the food like substance (low iodine) and then eat it. sorry i guess im in one of those strange moods again.

yea I know about the shortage they originaly planed to do my 1 year out scan in febuary and the doc ordered up/put me on the list in november.... we had to delay my scan to may so i could do it with thyrogen.

hate medical terms ok here we go --- for the "no histologic abnormality"
histolic - The microscopic structure of tissue.
so useing a microscope they found nothing abnormal

your looking for something like found evidence of parathyritical tissue or such... that will tell you if they got a parathyroid. the reason they got my parathyroids (2 of them total) was they were physicaly inside the thyroid itself (it happens all the time and is considered normal)

CLRRN's picture
Posts: 127
Joined: Jun 2010

Hey there....surgery went well. More discomfort this go round but my ice neck collar makes it much better.

The haze/foggy feeling is back and I HATE IT. Trying to get daughter ready to go back to college. LOL I don't have time for this.

The ENDO put me on Cytomel 25mcg 3 times/day. I started taking it today.

Thanks for hints on LID diet/meals. My partner Mike loves to cook. He's already been on the thyca.org website.

I'm going back to the couch..i'm so sad and this is not me and I need to get control.


Posts: 507
Joined: Apr 2010

25mcg of cytomel is about 100-125 mcg equivalent of synthroid
So 75mcg worth of cytomel in a day is about like 300-375mcg of synthroid.
Myself at 315lbs is on 200mcg synthroid and 25mcg cytomel.
After my surgery they put me on 25mcg cytomel once a day cause they wanted to make my hypo so my body would burn through all the stored T4.

so unless you weigh about my weight or more that is probably way too much cytomel.

well if your partner loves to cook maybe he should start trying those meals and improving on them... if he makes something better and is willing to share i know most of us will be going through LID again sometime so anything there helps.

Good news though it should pick ya right up in a day or so.. but be sure to watch for hyperthyroidic conditions. You will also probably find out that you get hungry on that much thyroid replacement so watch what you eat.

Glad you made it through that stage of your treatment


CLRRN's picture
Posts: 127
Joined: Jun 2010

Hey Craig,

Interesting road to recovery. I did manage to get a nice size hematoma at my incision site but it's slowing reabsorbing. I did not have a drain with either surgery, probably should have had one w/surgery #2.

The foggy feeling is gone but I don't feel myself. I think I'm tolerating the cytomel. I do feel a little jittery at times however I do have an increased appetite. I see the ENDO on 9/13 so hopefully I will learn her rationale for starting me on 25mcg 3xday. I'm looking forward to feeling "normal" again or is this my new normal? I've been off work since the first surgery and hope to return after Labor Day.

Whats with the change in my vision? Another bonus of thyroidectomy?? I think my calcium has finally leveled off-another weird sensation. Keeps getting better and better right? Oh and I so enjoy the constipation associated w/calcium supplements.

Any restrictions with the RAI? Can I use my computer? Cell phone/text? Fortunately we have an in-law apt in our house so I will be moving in temporarily. My dogs will miss me :( Do I need to take off from work? I'm going to try and get the dose on a Friday. Thoughts/suggestions welcome.

Guess that's all. Thank you for all your informative posts. I will keep in touch.


Posts: 118
Joined: Oct 2009

Hi Chris~ My husband passed away from head and neck cancer in 2009. We were married close to 25 years and have 3 children (they were 13, 21 and 23 at the time of his passing). One year later, I was dx with papillary cancer (I also found out I have the Braf gene). I had a hoarse voice and just assumed it was due to stress (I had to short sell our family home after my husband passed and my kids were also having issues). They ran tests and ended up doing a biopsy. It was negative, but the ENT felt is was incorrect due to the calcification of the tumor. I elected to have a partial thyroidectomy, with the understanding that the tumor would be biopsied while I was under. I ended up with a TT. Cancer was present on both sides. I underwent radiation and am in the process of going hypothyroid (due to the shortage of thyrogen) for my follow up scan. It took me awhile - 2 or 3 months - to feel "normal" after the radiation. I think your body needs time to adjust to the synthroid meds. It took my parathyroids a long time to "come out of shock" and start functioning. (one was cut during my TT and the surgeon "diced" it and sewed it into my muscle). I now only take one calcium pill a day instead of nine. There are restrictions after you have RAI. You are fortunate to be able to go to the "in-law" suite :) I slept on a blow up mattress in my bathroom. I was getting night sweats and did not want to contaminate my mattress. I stayed away from everyone for a week but slept in my bed after the 4th night. I stayed away from my puppy and my son's girlfriends 18 month old for 2 weeks. I also: flushed 3 times after using the restroom, showered 2x daily, sucked on lemons every hour the first 24 hours-so the radiation would not lie in the salivary glands and scar them causing dry mouth (also drank alot of water), bought disposable gloves anytime I handled things like a phone, bought disposable plates and silverware for eating, made up low iodine meals ahead and had low iodine snacks on hand. I also bought some magazines and a paperback book which I read and then tossed. Hope this helps. Take care~cheryl

CLRRN's picture
Posts: 127
Joined: Jun 2010

Hi Cheryl,
Thanks for sharing your story. I'm sorry that you lost your husband. Not an easy journey :(

Not sure if you read my bio but my life partner was diagnosed w/Stage 4 Head/Neck cancer (tonsil was primary w/2 of 42 lymph nodes positive. I've been the "rock" for everyone and now i'm struggling just to get off the couch let alone run around supporting and doing "everything". My daughter is a junior in college and I don't feel well enough to endure a 6 hour (round trip) car ride, let alone the shopping that she would want to do. I guess I need to learn to be patient as I get back to normal.

I'm glad your doc was persistent and equally glad to know you only had one surgery. I had this "feeling" that mine was going to be positive but the ENDO and ENT quoted statistics and how most follicular adenomas were benign...hmmm not in my case. LOL

Thanks for all the suggestions. I used to work on an oncology unit and took care of patients that received I-131. Back then patients like us were hospitalized. We use to wear a device that measured the radiation when we entered/left the patients room. Although it was only once or twice during an 8 hour shift, it was still exposure. I recall emptying out urine measurement containers...wow. Ironically enough, my best friend also worked on the unit and she was diagnosed w/Papillary last year. Coincidence??? Her name is Cheryl and my partner is Mike....weird huh?????

Thanks again for the info.....keep in touch and let us know how things go with you/your upcoming scan.

Posts: 507
Joined: Apr 2010


Not all people with thyroid disease have problems with their eyes. It is a common enough problem, however, that many people have expressed a desire to have more information about how their thyroid condition is related to their eye problems and what can be done about it.

The eye changes associated with thyroid disease are referred to as Thyroid Related Orbitopathy (TRO). Although TRO is seen in all types of thyroid disorders, it is most common in patients that are or were hyperthyroid. TRO occurs in about 1 out of 20 people that are hyperthyroid. It can also rarely occur in those who are hypothyroid and even when there is an absence of thyroid abnormalities in the body.

Thyroid disease can cause many different eye problems. These include redness and swelling, double vision, decreased vision, eyelid retraction and a protrusion of the eye itself. It is important to realize that if one of these occurs, that it does not mean others will occur.

Eye problems will usually occur and frequently change in type or severity for between 6 months and 2 years. Once stabilized, it is unusual for the eyes to start changing again. In some patients the eyes return to normal. Others are left with some type of permanent changes. A great deal can be done to improve these problems, but this may require surgery.

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